Shaken Baby Syndrome Support Network Official BLOG

Introducing Lisa Gilbert

2011-11-04T23:46:00.000-07:00

Hello. I am Lisa Gilbert, mother to Riley Gilbert, SBS Survivor. Riley was violently shaken on March 27, 2007 at the age of 2 by her day care provider and former family friend. Riley was not expected to survive, and spent many months in the hospital, but she is a true miracle! Riley has been left with multiple disabilities as the result of her attack, but fights daily to improve, with her family by her side. Over the past four years, I have learned how to become a strong advocate for my daughter, while managing Riley’s needs and navigating the legal, medical, therapeutic, insurance, and special education worlds. Aside from my most important roles as a wife to my husband of 12 years, Brad, and mother to Riley and her brother Zachary, I have also worked for the past 11 years as a school counselor for high school students. I hold an Associate’s Degree in Social Work, a Bachelor’s Degree in Sociology with a minor in Social Work, and I am a Certified Counselor with a Master’s of Education in School Counseling from The College of Saint Rose in New York. I began forming relationships through networking on Facebook with other SBS parents, and was contacted by Rachel to blog and serve on the SBS Support Network board in 2009. Since being thrust unexpectedly into life as an SBS mom, my desire and mission is to support others affected by Shaken Baby Syndrome, since many often feel so alone in their journey, and I am thrilled to have the opportunity to do so through the Support Network!

Introducing Kelly Link

2011-11-01T18:00:00.000-07:00

Hello all, I’m Kelly! I was born and raised right here in Southwest FL. My husband Mark and I have been married for 2 years and together we brought 3 boys into our marriage. We have Cody (9), Jacob (6), and Ryan (8) who is my SBS Survivor.

Ryan was shaken by his biological father in June 2003 when he was 9 weeks old. While Ryan is a high functioning survivor, he still has many medical problems that we have to deal with on a daily basis. They include a Traumatic Brain Injury, ADHD, Allergies, Acid Reflux, Growth Deficiency, Poor Appetite, Multiple sleep disorders, Sensory Integration Disorder, Petit Mal seizures, Anxiety, and Hypotonia. As much as I would like to think that some of these difficulties will go away, I am realistic to know that more than likely they will not, and others may develop down the road. Ryan’s strength and determination are what help get me through my days. He has gone through so many obstacles in his short 8 years of life, and he still continues to do so. However, he always comes out on top, and I have complete admiration for him because of that!

My desire to help others, and to be helped by others who are going through the same difficulties as me is what led me to Rachel with the Shaken Baby Support Network. Having someone who completely understands what you are going through is more beneficial than I could ever describe. The friends that I have made through this journey are more like family, than like friends. They are my shoulder lean on when times get tough and I am the listening ear whenever they may need it. SBS has become my life and I am willing to devote all of my time and attention to awareness and education so no one has to go through what we do!

Introducing Angela Cook

2011-10-31T18:00:00.000-07:00

Hey there! My name is Angela, cousin to the most fabulous little cousin, Michael. I have 3 amazing children with the love of my life, Jason. Together we have attended numerous candlelight vigils. I am also a full time student with the ambition to work in the health care field, the exact profession is not fully determined yet. I am happily awaiting to see what our future holds in the coming years. :)

I was never blessed to have met my cousin Michael in person, he was gone before my uncle (Jerry) married his mother (Tammi). Tammi and Jerry had one of the most beautiful weddings I had gone to. The floral arrangement was spectacular, there was a bouquet of roses and in the center was a sunflower. The roses signified all the loved ones we had lost, he sunflower was the symbolic gesture of remembering that we were missing someone very dear, Michael.

From that time on I would learn about Michael through his older sister, Nicole. Nicole and I would stay up late at the grandparents, and somehow us two would start talking about Michael, I knew she missed him each and every day that passed. The day must have played over and over in her head. Michael and Nicole's sister, Elizabeth was hospitalized with pneumonia, so Tammi had planned on a friend, whom also was a nurse, to watch over her other children while she stayed bedside with Elizabeth. The day Elizabeth was set to be discharged from the hospital is the day everyone's life changed. A nurse had found my Aunt Tammi, and said she was needed downstairs in the ER, puzzled as to why she went downstairs to hear and see the horror of what happened to her 6 month old baby. She would later learn that Michael suffered from Shaken Baby Syndrome and was also thought he was slammed up against a wall or floor, his chances of survival was only 1%.

Baby Michael defied all odds and survived. He was left with severe handicaps, however he thrived on the love that surrounded him. At the tender age of 5, Michael's body left this earth. As a family we are positive that he remains around us, we all feel his love on a daily basis.

It is because of Michael that I hopped onto Myspace to raise awareness for all children of child abuse. It was then that I ran into the most horrific thing ever. There were many, many cases of Shaken Baby Syndrome. It was around 2007 that I had the pleasure to talk to Rachel, the mother of angel Madilyne Wentz. Rachel wanted to do something for all the victims of Shaken Baby Syndrome. Our first small step in raising awareness together was doing a small video montage of the many victims and survivors of SBS. From there the rest is history as our main goal is to provide comfort to the families, by us, the family. Sometimes it's best to be able to talk with someone who has walked in similar shoes.

Introducing MamaSue

2011-10-30T14:27:00.000-07:00

My name is Sue Sumner, mother to Dustin and Rachel Sumner, grandmother to Madilyne, Brody and Blake.

I was born in Emporia, KS and lived there most of my life. I come from a good sized extended family, but I was the only child growing up. I had a wonderful Mother and Father, who have since passed away.

After High School, I went to Cosmetology School. Throughout the years I have worn many hats, though. I have worked with interior decorators, managed fast food and family style restaurants, been a receptionist both to a moving company and a copier company. I have poured, made and sold ceramics, was a hairdresser and nail artist, owned a motel and a restaurant for about 10 years, and was a dispatcher for communications company. I worked for a non-profit organization as a customer service rep and I now work, again, as a dispatcher for a company which sells and services printer/copiers. In my spare time I paint pictures and walk the bridges here in Little Rock. I have lived in Kansas, Missouri, Florida and most recently, Arkansas.

I was married at 19 and we were together for 34 years. That is when my granddaughter was murdered, due to Shaken Baby Syndrome, and family life was never the same. I lost my beautiful granddaughter to someone’s negligence and rage. Something 100% preventable.

Having gone through all the “stuff” related to Shaken Baby Syndrome has taught me to appreciated my family and be thankful for what God brings into my life, for one never knows what will happen in the next moment. Thanksgiving holds a whole new meaning each year as I recall all that I have and am thankful for.

Introducing MamaKim

2011-10-25T19:18:00.000-07:00

Hello! Mama Kim here. I have been married to Denny for almost 26 yrs. We have 3 grown children Steffany, (twins) Denny Jr., and Dani. We have 1 grandson Dominic, and a new grandchild due in mid March!!
I was a cook for 20 yrs and now I am Assistant Office Manager of the Bureau of Motor Vehicles in Bowling Green, Ohio.
We became more familiar with SBS in March 2007 when our then 3 month old grandson Dominic was violently shaken by his biological father. He had a subdural hematoma, both retinas were hemorrhaged and he had 5 broken ribs in his back. In 2008 I was doing research on SBS because I wanted to understand more, when on MySpace I came across Rachel, her story and the story of little Kaleb. From there the rest is history.

Coming soon...!

2011-10-25T12:44:00.000-07:00

Hello to all of our SBS friends and families!!

As many of you know the Network is currently changing a few things around, and revamping some others. One of the things that we thought was important during this process was giving you all the opportunity to know exactly who we are, and how we came to the network. Coming soon you will see a posting containing a biography and a picture of each of our board members. We hope you enjoy this!

Here we are...

2011-10-04T00:41:00.000-07:00

I can truly not believe it has been the 7 shortest months of my life since I've truly last posted anything on this blog. I've been away for a number of reasons, with the main one being my mental health.

It has been a long long time since I've opened up to all of you about "the real me" and my struggles. My struggles however, have been what has brought me to you and you to me. Each one of you. Through posting, when we go back clear to MySpace where this "group" truly formed, I began just blogging on a daily basis, about what was happening, what was going on, and the struggles. One by one I came into contact with you, and for that I am forever grateful. With that said, I have some extremely personal things to talk to you about. I have been known to say too much, and at times not enough, so I wanted to take a moment, and open up again, like I haven't in over 4 years. The best part about falling, is the getting up.

I would first share with you that I have moved. Not to another state, or even another town, but to what I can officially call home. My fiancé (by the way I am engaged!) and I moved into our first official home together in June 2011. I can tell you when I walk in from work, errands, or even letting the dogs out (yes we have 2) that I've walked into what I can finally call home. That in itself has been extremely emotional because I have not had that feeling since Madilyne. I've felt an overwhelming sense of displacement ever since.

I moved to Arkansas in July 2009, to be hired on by an amazing company, and within my time spent working I would find the man I prayed so long and hard for. In February 2011, he proposed and I indeed obliged. He is everything I prayed for and more. We all have hopes and dreams when it comes to life, and through the darkness that has filled my life in the past 6 years, it was extremely hard for me personally to hold onto hope, for fear it being false. I turned to prayer, because whether answered or not, the unanswered turned out to be the bigger blessings in my life.

The proposal was perfect, just as any girl could ever hope it to be. It was beyond any feeling, emotion, or imagination. It didn't include extravagant flowers, thousands of people, or millions of dollars. It included so much more. His promise to me, his love for me, and his life he wanted to spend the rest of with me. That was beyond any of the previous listed. I was excited. He asked I not announce it (and for those who know me know I CAN'T keep a secret!!!) until we had my mom and his parents over for dinner, and we were both able to talk to our families. It was out of that I knew, this is how it is SUPPOSED to be. Intimate, private, and all about the love we share.

Then all of the sudden it came to me. I am going to be planning a wedding. My wedding. Our wedding. I immediately began garage sailing like an insane woman, getting all the tools and supplies I needed, and began clipping articles, getting the image set just right on paper and in my mind, to make it as close to perfect as possible. It wasn't even 2 years ago I was a girl, prepared to devote my life to the Network, and begin stock piling cat food. I never in my wildest dreams thought I could ever unleash my heart ever again, but deep down I always held true to my prayers, all in due time, he would come. He did.

It was a good way into the planning process that I began going through these moments, and those moments turned into days, and days of course turned into weeks, when I began to stay in bed. I didn't want to talk to anyone, I did not want to go anywhere, I just wanted to lay in bed and pretend that nothing was going on outside of our house in the world. Was I depressed? But if I am depressed, why am I depressed? I started seeing my Therapist at least twice a week to begin, a Psychiatrist once a week, and my primary Dr. once a week. They would try medicines, try other medicines, some making my physically ill, others making me emotionless, and then there were the ones that making me sick beyond holding my head up. That continued for at least 2 months.

Finally, I was at my therapists office talking to him one day, and the wagon I have been in hit a brick wall head on and the tears began to fall down my face. It was then I realized, all of the heartache I felt from my divorce over 8 years ago, had been suppressed this entire time. From the moment my divorce was finalized to the date Madilyne was killed was almost exactly 4 months to the day. The following I watched my parents marriage of 35 years dissolve itself, and I moved too many toes and fingers to count the times, that as I spent so much time working through what happened with Madilyne, and deciphering between all the guilt I carried in my heart for the day when my heart told me to pick her up while working, and not even 30 minutes later I got "the call". I never knew how much my heart was tarnished from all of this combined together.

This is supposed to be the happiest time in my life. This is supposed to be the time when the parties are non stop, I'm working out to look my best, planning like crazy, and spending time with all my lady friends to figure out the details. I have done not one. I have spent the past 4 months holding him close, very close, because I love him.

This blind sided me. I have failed some, but most of all I have grown even more emotionally because of this. I am happy, once I said all of this out loud, I was able to finally acknowledge what was hurting my heart, I was able to deal with the dreams of flashbacks I was having and to decipher whether it was real or fiction, and my dreams have again became dreams and not dreaded nightmares.

These past 4 months have been a growing period for me, I can not begin to put into words without sounding like I am rambling. Which brings me to this blog. This blog began in 2009, but this journey with so many of you began clear back in 2006 on MySpace. I began to open my wounds, write blogs, explain how I dealt with a situation, what enraged me, and what made me content. It was that way that I have been able to connect with all of you, and I am sorry if there has been a block between that. I have said so many times that I wish when some people get to a certain point in their lives, they could just remember what it felt like at the point I was in, or they could just remember what it is like to have a day when you feel the entire world is against you, and that is why I am here. I am here because this my friends, whether you have just found this blog or been on this journey with me since the days of MySpace, this is where we found our common ground and our feelings.

I will never attempt to relate to a mother of a Survivor, and at times it is hard to relate to a mother of a victim. I can guarantee one thing, Madilyne's Legacy that brought so many of us together will always continue, and this Network will be in place, just maybe not as it has been.

There has been great confusion within my heart on how to talk to you all of you about this, because I know how much it means to ALL OF YOU, but also to ME. With the help of all of you, I was able to lead the way for this Support Network, to form a group, for all families to join together regardless of their circumstances to obtain the support they need. The Support Network has done just that. We have grown beyond any number to ever flash in my mind, there is demand after demand for families across the Globe for opportunities that are quickly becoming endless, and it is absolutely amazing how beautiful all of this has become. However, it is time for regrouping, so the Network and the support, and abilities for us continue to grow as much as it can and be healthy.

In order for this to happen I am going to have to tell you something that is so bittersweet for me. Madilyne brought you all to me. If it wasn't for her I would not know not even one of you. In 6 years, she has brought over 25,000+ people into my life, for comfort and for support, and because of that, there is something I need to do for her, and most importantly I need to do for me and my soon to be husband. Our wedding is March 10, 2012, and with that said, I must announce that the vigil this coming year (April 2012) will be broadcast live via UStream. It is such an important event for the healing families have obtained from this event. It is not your 5 star event, with flashy hotels, suits and ties, or your Sunday Best. It is a family reunion. One weekend each year when we gather together as the growing family we are, to spend an awesome time together. This year, we are going to light the sky with our candles, and all of our speakers will be present, and we will have a lot of announcements this year as well. This year, every single one of you will be able to attend the vigil, even if there will not be a gathering, we will all be together, Live.

This has been the headrest decision for me to make. All of the Board Members with the Support Network have worked their butts off and it will continue. We do not stop, ever. We just have to be flexible, due to the responsibilities entailed within planning such a special event. Truly, we have all been affected by SBS and are here together, and each have our times, when we need time to heal. This is mine. It is very important for me to take this time, with my soon to be husband, so I can continue on my journey in life, as a healthy, happy woman, mother, daughter, sister, aunt, and now wife. This is not temporary, this is for the rest of my life. I do not ever want any of you to feel let down. We are going to empower, and do what has never been done before. The world's largest Social Media Candlelight Vigil for Shaken Baby Syndrome. I hope you will be there, and I hope you tune in. I will have information the latter part of November for you, with time and links and such because this will help lead us to the biggest Vigil yet, the SBS Vigil of 2013!

From the bottom of my heart, I love you. All of you. One would think it should or shouldn't be a "big deal", to me it is. Because without all of you my family, and my fiancé, I can not continue.

All my love,
Rachel
rachel@sbssupportnetwork.com

Last update! Winner To be announced at 12:15am CST

2011-07-17T21:54:00.001-07:00

SBS Race Track BILLBOARD SIGN CONTEST UPDATE
Billboard Sign Contest Update!!!
As you know the BILLBOARD SIGN Contest began June 15, 2011 and is set to end JULY 17th 2011 at 11:59PM CST! Anyone can vote and ANY child can be entered into the contest! All it takes is 1 vote! Pending the fund raised of $300, the WINNER will be on the billboard sign that is 4FT by 8FT at the Toledo Ohio Speedway in Toledo Ohio on Shaken Baby Syndrome RACE NIGHT August 5th!!!! The winner of this contest will be on a billboard sign in the BEST viewable location on the track and will be recognized with the 1st, 2nd, and 3rd place winners (SBS Heros) that won the RACE CAR contest in October 2010!! (Xavier, Maddie, and Jules) :)

Each $1.00 equals 1 vote!! You can get your vote in today by going to: http://www.shakenbabysupport.com and clicking on the "MERCHANDISE" tab on the website, and purchasing your tickets there! Each vote counts!!

Please remember to pass along this information to all your friends and family!!! The ONLY requirement for this contest is the guardians permission!

GOOD LUCK!! Keep the votes coming!!!! :)

As of July 17th, 2011 11:53pm CST

Evalee Johnsen - 33 VOTES
Kaleb Schwade - 39 VOTES
Evelynn Biondo - 17 VOTES
Dominic DeWitt - 199 VOTES
Riley Gilbert - 277 VOTES
Lily Yeager - 107 VOTES
Trevor Paour - 17 VOTES
Madilyne Wentz - 95 VOTES
Colby Thompson - 12 VOTES
Sarah Jane Donohue - 52 VOTES
Xavier Delgado - 50 VOTES
Juliana "Jules" Thaxton - 67 VOTES

FIRST PLACE - Riley Gilbert
SECOND PLACE - Dominic DeWitt
THIRD PLACE - Lily Yeager

KEEP VOTING! Contest ends TONIGHT!!!
As always if any concerns arise, please contact Rachel ASAP at rachel@sbssupportnetwork.com

11PM Update - Only 1 more update before winners are announced!

2011-07-17T21:10:00.000-07:00

SBS Race Track BILLBOARD SIGN CONTEST UPDATE
Billboard Sign Contest Update!!!
As you know the BILLBOARD SIGN Contest began June 15, 2011 and is set to end JULY 17th 2011 at 11:59PM CST! Anyone can vote and ANY child can be entered into the contest! All it takes is 1 vote! Pending the fund raised of $300, the WINNER will be on the billboard sign that is 4FT by 8FT at the Toledo Ohio Speedway in Toledo Ohio on Shaken Baby Syndrome RACE NIGHT August 5th!!!! The winner of this contest will be on a billboard sign in the BEST viewable location on the track and will be recognized with the 1st, 2nd, and 3rd place winners (SBS Heros) that won the RACE CAR contest in October 2010!! (Xavier, Maddie, and Jules) :)

Each $1.00 equals 1 vote!! You can get your vote in today by going to: http://www.shakenbabysupport.com and clicking on the "MERCHANDISE" tab on the website, and purchasing your tickets there! Each vote counts!!

Please remember to pass along this information to all your friends and family!!! The ONLY requirement for this contest is the guardians permission!

GOOD LUCK!! Keep the votes coming!!!! :)

As of July 17th, 2011 11:03pm CST

Evalee Johnsen - 33 VOTES
Kaleb Schwade - 39 VOTES
Evelynn Biondo - 17 VOTES
Dominic DeWitt - 199 VOTES
Riley Gilbert - 247 VOTES
Lily Yeager - 107 VOTES
Trevor Paour - 17 VOTES
Madilyne Wentz - 93 VOTES
Colby Thompson - 12 VOTES
Sarah Jane Donohue - 52 VOTES
Xavier Delgado - 50 VOTES
Juliana "Jules" Thaxton - 67 VOTES

FIRST PLACE - Riley Gilbert
SECOND PLACE - Dominic DeWitt
THIRD PLACE - Lily Yeager

KEEP VOTING! Contest ends TONIGHT!!!
As always if any concerns arise, please contact Rachel ASAP at rachel@sbssupportnetwork.com

10pm Contest Update - Next Update to come at 11:15pm! CST

2011-07-17T19:55:00.000-07:00

SBS Race Track BILLBOARD SIGN CONTEST UPDATE
Billboard Sign Contest Update!!!
As you know the BILLBOARD SIGN Contest began June 15, 2011 and is set to end JULY 17th 2011 at 11:59PM CST! Anyone can vote and ANY child can be entered into the contest! All it takes is 1 vote! Pending the fund raised of $300, the WINNER will be on the billboard sign that is 4FT by 8FT at the Toledo Ohio Speedway in Toledo Ohio on Shaken Baby Syndrome RACE NIGHT August 5th!!!! The winner of this contest will be on a billboard sign in the BEST viewable location on the track and will be recognized with the 1st, 2nd, and 3rd place winners (SBS Heros) that won the RACE CAR contest in October 2010!! (Xavier, Maddie, and Jules) :)

Each $1.00 equals 1 vote!! You can get your vote in today by going to: http://www.shakenbabysupport.com and clicking on the "MERCHANDISE" tab on the website, and purchasing your tickets there! Each vote counts!!

Please remember to pass along this information to all your friends and family!!! The ONLY requirement for this contest is the guardians permission!

GOOD LUCK!! Keep the votes coming!!!! :)

As of July 17th, 2011 10:03pm CST

Evalee Johnsen - 33 VOTES
Kaleb Schwade - 39 VOTES
Evelynn Biondo - 17 VOTES
Dominic DeWitt - 199 VOTES
Riley Gilbert - 211 VOTES
Lily Yeager - 97 VOTES
Trevor Paour - 17 VOTES
Madilyne Wentz - 93 VOTES
Colby Thompson - 12 VOTES
Sarah Jane Donohue - 52 VOTES
Xavier Delgado - 50 VOTES
Juliana "Jules" Thaxton - 67 VOTES

FIRST PLACE - Riley Gilbert
SECOND PLACE - Dominic DeWitt
THIRD PLACE - Lily Yeager

KEEP VOTING! Contest ends TONIGHT!!!
As always if any concerns arise, please contact Rachel ASAP at rachel@sbssupportnetwork.com

8PM CST Contest UPDATE! The RACE is ON! New top runner!!

2011-07-17T18:22:00.000-07:00

SBS Race Track BILLBOARD SIGN CONTEST UPDATE
Billboard Sign Contest Update!!!
As you know the BILLBOARD SIGN Contest began June 15, 2011 and is set to end JULY 17th 2011 at 11:59PM CST! Anyone can vote and ANY child can be entered into the contest! All it takes is 1 vote! Pending the fund raised of $300, the WINNER will be on the billboard sign that is 4FT by 8FT at the Toledo Ohio Speedway in Toledo Ohio on Shaken Baby Syndrome RACE NIGHT August 5th!!!! The winner of this contest will be on a billboard sign in the BEST viewable location on the track and will be recognized with the 1st, 2nd, and 3rd place winners (SBS Heros) that won the RACE CAR contest in October 2010!! (Xavier, Maddie, and Jules) :)

Each $1.00 equals 1 vote!! You can get your vote in today by going to: http://www.shakenbabysupport.com and clicking on the "MERCHANDISE" tab on the website, and purchasing your tickets there! Each vote counts!!

Please remember to pass along this information to all your friends and family!!! The ONLY requirement for this contest is the guardians permission!

GOOD LUCK!! Keep the votes coming!!!! :)

As of July 17th, 2011 8:20pm CST

Evalee Johnsen - 33 VOTES
Kaleb Schwade - 39 VOTES
Evelynn Biondo - 17 VOTES
Dominic DeWitt - 199 VOTES
Riley Gilbert - 163 VOTES
Lily Yeager - 97 VOTES
Trevor Paour - 17 VOTES
Madilyne Wentz - 73 VOTES
Colby Thompson - 12 VOTES
Sarah Jane Donohue - 52 VOTES
Xavier Delgado - 50 VOTES
Juliana "Jules" Thaxton - 67 VOTES

FIRST PLACE - Dominic DeWitt
SECOND PLACE - Riley Gilbert
THIRD PLACE - Lily Yeager

KEEP VOTING! Contest ends TONIGHT!!!
As always if any concerns arise, please contact Rachel ASAP at rachel@sbssupportnetwork.com

6pm CST Update! Only 5 hours & 59 mins more to vote!!!

2011-07-17T15:44:00.000-07:00

SBS Race Track BILLBOARD SIGN CONTEST UPDATE
Billboard Sign Contest Update!!!
As you know the BILLBOARD SIGN Contest began June 15, 2011 and is set to end JULY 17th 2011 at 11:59PM CST! Anyone can vote and ANY child can be entered into the contest! All it takes is 1 vote! Pending the fund raised of $300, the WINNER will be on the billboard sign that is 4FT by 8FT at the Toledo Ohio Speedway in Toledo Ohio on Shaken Baby Syndrome RACE NIGHT August 5th!!!! The winner of this contest will be on a billboard sign in the BEST viewable location on the track and will be recognized with the 1st, 2nd, and 3rd place winners (SBS Heros) that won the RACE CAR contest in October 2010!! (Xavier, Maddie, and Jules) :)

Each $1.00 equals 1 vote!! You can get your vote in today by going to: http://www.shakenbabysupport.com and clicking on the "MERCHANDISE" tab on the website, and purchasing your tickets there! Each vote counts!!

Please remember to pass along this information to all your friends and family!!! The ONLY requirement for this contest is the guardians permission!

GOOD LUCK!! Keep the votes coming!!!! :)

As of July 17th, 2011 2:20pm CST

Evalee Johnsen - 33 VOTES
Kaleb Schwade - 39 VOTES
Evelynn Biondo - 17 VOTES
Dominic DeWitt - 115 VOTES
Riley Gilbert - 127 VOTES
Lily Yeager - 97 VOTES
Trevor Paour - 17 VOTES
Madilyne Wentz - 52 VOTES
Colby Thompson - 12 VOTES
Sarah Jane Donohue - 52 VOTES
Xavier Delgado - 50 VOTES
Juliana "Jules" Thaxton - 67 VOTES

FIRST PLACE - Riley Gilbert
SECOND PLACE - Dominic DeWitt
THIRD PLACE - Lily Yeager

KEEP VOTING! Contest ends TONIGHT!!!
As always if any concerns arise, please contact Rachel ASAP at rachel@sbssupportnetwork.com

2:00PM CST Contest Update! BIG CHANGES!

2011-07-17T11:39:00.000-07:00

SBS Race Track BILLBOARD SIGN CONTEST UPDATE
Billboard Sign Contest Update!!!
As you know the BILLBOARD SIGN Contest began June 15, 2011 and is set to end JULY 17th 2011 at 11:59PM CST! Anyone can vote and ANY child can be entered into the contest! All it takes is 1 vote! Pending the fund raised of $300, the WINNER will be on the billboard sign that is 4FT by 8FT at the Toledo Ohio Speedway in Toledo Ohio on Shaken Baby Syndrome RACE NIGHT August 5th!!!! The winner of this contest will be on a billboard sign in the BEST viewable location on the track and will be recognized with the 1st, 2nd, and 3rd place winners (SBS Heros) that won the RACE CAR contest in October 2010!! (Xavier, Maddie, and Jules) :)

Each $1.00 equals 1 vote!! You can get your vote in today by going to: http://www.shakenbabysupport.com and clicking on the "MERCHANDISE" tab on the website, and purchasing your tickets there! Each vote counts!!

Please remember to pass along this information to all your friends and family!!! The ONLY requirement for this contest is the guardians permission!

GOOD LUCK!! Keep the votes coming!!!! :)

As of July 17th, 2011 2:20pm CST

Evalee Johnsen - 33 VOTES
Kaleb Schwade - 39 VOTES
Evelynn Biondo - 17 VOTES
Dominic DeWitt - 115 VOTES
Riley Gilbert - 102 VOTES
Lily Yeager - 97 VOTES
Trevor Paour - 17 VOTES
Madilyne Wentz - 32 VOTES
Colby Thompson - 12 VOTES
Sarah Jane Donohue - 52 VOTES
Xavier Delgado - 50 VOTES
Juliana "Jules" Thaxton - 67 VOTES

FIRST PLACE - Dominic DeWitt
SECOND PLACE - Riley Gilbert
THIRD PLACE - Lily Yeagar

KEEP VOTING! Contest ends TONIGHT!!!
As always if any concerns arise, please contact Rachel ASAP at rachel@sbssupportnetwork.com

SBS Race Track BILLBOARD SIGN CONTEST UPDATE

2011-07-16T17:29:00.000-07:00

Billboard Sign Contest Update!!!
As you know the BILLBOARD SIGN Contest began June 15, 2011 and is set to end JULY 17th 2011 at 11:59PM CST! Anyone can vote and ANY child can be entered into the contest! All it takes is 1 vote! Pending the fund raised of $300, the WINNER will be on the billboard sign that is 4FT by 8FT at the Toledo Ohio Speedway in Toledo Ohio on Shaken Baby Syndrome RACE NIGHT August 5th!!!! The winner of this contest will be on a billboard sign in the BEST viewable location on the track and will be recognized with the 1st, 2nd, and 3rd place winners (SBS Heros) that won the RACE CAR contest in October 2010!! (Xavier, Maddie, and Jules) :)

Each $1.00 equals 1 vote!! You can get your vote in today by going to: http://www.shakenbabysupport.com and clicking on the "MERCHANDISE" tab on the website, and purchasing your tickets there! Each vote counts!!

Please remember to pass along this information to all your friends and family!!! The ONLY requirement for this contest is the guardians permission!

GOOD LUCK!! Keep the votes coming!!!! :)

As of July 16th, 2011 8:20pm CST

Evalee Johnsen - 33 VOTES
Kaleb Schwade - 39 VOTES
Evelynn Biondo - 17 VOTES
Dominic DeWitt - 95 VOTES
Riley Gilbert - 82 VOTES
Lilly Yeager - 92 VOTES
Trevor Paour - 17 VOTES
Madilyne Wentz - 32 VOTES
Colby Thompson - 12 VOTES

FIRST PLACE - Dominic DeWitt
SECOND PLACE - Lilly Yeager
THIRD PLACE - Riley Gilbert

KEEP VOTING!
As always if any concerns arise, please contact Rachel ASAP at rachel@sbssupportnetwork.com

Urgent! We need 2 minutes of your time! From Patrick Donohue

2011-07-14T20:21:00.001-07:00

As you know, we have been working for several years to create and now implement the National Pediatric Acquired Brain Injury Plan (PABI Plan) which develops a seamless, standardized, evidence-based system of care for the millions of American families who have a child/young adult suffering from the #1 leading cause of death and disability for our youth: brain injury!

We are on the cusp of making history and we need just a little bit of help from you and your friends; please take just TWO minutes (120 seconds) to help change the world for millions of our families who have a child/young adult with a brain injury.

Later this week Congressman Leonard Lance will be introducing the National Pediatric Acquired Brain Injury Plan Act (PABI Plan Act) which will create a $2.9 Billion, seven-year initiative to implement the PABI Plan (this legislation will NOT create any new federal agency, will NOT add any new federal jobs and will NOT add a penny to the federal budget). Simply put, the PABI Plan will make sure the millions of our American families will no longer need to reinvent the wheel to care for their child with a brain injury!

Please follow these three easy steps which will take no longer that 120 seconds:
1. Find out who your Member of Congress is: by going to this website and entering in your Zip Code you can easily find out who represents you in Congress
click here: http://www.house.gov/htbin/findrep?ZIP
2. Send us an email to Ted@TheBrainProject.org with the name of your Member of Congress
3. We will email you the name and phone number of the appropriate staff person to call and leave a 30-second message encouraging your Member of Congress to be a co-sponsor of the PABI Plan Act

It is that SIMPLE and that EASY!! Members of Congress like to hear from their constituents and your message will mean a lot! We are trying to get 100 co-sponsors by Friday (50 Republicans and 50 Democrats)!

And finally, if you can ask any family or friends to take TWO minutes from their day to do the same thing by simply forwarding this message to them!

If you would like to learn more about the PABI Plan and our efforts, please read my letter to Sarah Jane when she turn five: www.TheBrainProject.org/lettertosarahjane.php and if you would like to read the three-page PABI Plan Act please visit www.TheBrainProject.org/PABIPlanAct.php

I cannot thank you enough in advance for taking TWO minutes out of your day for Sarah Jane and the millions of American children/young adults just like her across the country!

All the best,
Patrick

Patrick B. Donohue, Esq.
Founder, The Sarah Jane Brain Foundation
339 Fifth Avenue - Suite 405
New York, NY 10016
(212) 576-1180
www.TheBrainProject.org

Billboard Sign Contest Update!!!

2011-07-08T18:13:00.000-07:00

As you know the BILLBOARD SIGN Contest began June 15, 2011 and is set to end JULY 15th 2011 at 11:59PM CST! Anyone can vote and ANY child can be entered into the contest! All it takes is 1 vote! Pending the fund raised of $300, the WINNER will be on the billboard sign that is 4FT by 8FT at the Toledo Ohio Speedway in Toledo Ohio on Shaken Baby Syndrome RACE NIGHT August 5th!!!! The winner of this contest will be on a billboard sign in the BEST viewable location on the track and will be recognized with the 1st, 2nd, and 3rd place winners (SBS Heros) that won the RACE CAR contest in October 2010!! (Xavier, Maddie, and Jules) :)

Each $1.00 equals 1 vote!! You can get your vote in today by going to: http://www.shakenbabysupport.com and clicking on the "MERCHANDISE" tab on the website, and purchasing your tickets there! Each vote counts!!

Please remember to pass along this information to all your friends and family!!! The ONLY requirement for this contest is the guardians permission!

GOOD LUCK!! Keep the votes coming!!!! :)

As of July 8th, 2011 8:20pm CST

Evalee Johnsen - 23 VOTES
Kaleb Schwade - 19 VOTES
Evelynn Biondo - 17 VOTES
Dominic DeWitt - 35 VOTES
Riley Gilbert - 72 VOTES
Lilly Yeager - 27 VOTES
Trevor Paour - 17 VOTES
Madilyne Wentz - 20 VOTES
Colby Thompson - 12 VOTES

FIRST PLACE - RILEY GILBERT
SECOND PLACE - DOMINIC DEWITT
THIRD PLACE - LILLY YEAGER

KEEP VOTING!
As always if any concerns arise, please contact Rachel ASAP at rachel@sbssupportnetwork.com

2011 SBS Vigil LIVESTREAM Videos! Watch HERE!!!

2011-04-22T12:12:00.000-07:00

What an awesome year for the families and the Network! A more indepth update and pictures are coming, but I know many of you stated you were not able to find/view the live stream or videos following the event so I wanted to take a moment and post them here for your viewing! Enjoy, and please let me know if there are any issues!

All my best,
Rachel
rachel@sbssupportnetwork.com
http://www.shakenbabysupport.com
FACEBOOK
TWITTER

On our way to pick up the families at the Tampa Airport!

A portion of the families have arrived and are EXCITED!

The VIGIL Begins!

The Morelocks celebrated their vow renewal with a surprise ceremony from their son DJ and his good friend Hunter <3

A few families stayed, to take Dominic, a SBS Survivor, to Disney World's Magic Kingdom, and Rachel, released a balloon that went straight to Heaven for Madilyne <3

Jackson's Story

2011-04-08T10:45:00.000-07:00

Another little who is a survivor of Shaken Baby Syndrome, a hero in so many ways.

Jackson Alexander Greer was born September 21st, 2009. He was a beautiful, healthy 6lbs. 15oz. boy. Jackson was always a great baby, a mama's boy from day 1. We did have troubles finding a formula that would work with his digestive system. Jackson only cried during diaper change, wanting to be held, or if he had a stomach ache. All those can be easily taken care of, patience is the key to having children. I went back to work when Jackson was 6 weeks old. One of my friends was opening her own daycare and wanted to watch my boys to get started. She had 2 kids of her own. She never once told me she couldn't handle Jackson. She always said he was a good baby along with his brother James. On December 8, 2009 Brandi had sent me a few text messages at work saying Jackson had fallen off the bed. She said she was changing him, reached over to grab a wipe, James pulled on the blanket, and Jackson rolled off the bed. The thing I didn't understand was why didn't she see that happening? Jackson supposedly landed on his stomach and cried for about 30 minutes then he was fine. I'm one of those paranoid moms so I left work and rushed Jackson to the pediatrician. Dr. Porter of Idaho Falls Pediatrics was the one checking Jackson over. To tell you the truth he made me feel like an idiot for bringing him in there. I told him the story and he looked at me with this dumb founded face, and asked why I brought him in? HE'S 3 MONTHS OLD AND FELL OFF A BED! I asked him to please check him out, so he felt his neck and his ribs and said he was fine. He then sent us on our way. Not once did it cross my mind that someone I trusted would shake my defenseless baby. That's something you only hear on the news. After that incident Jackson started to get more and fussier. He also wasn't gaining weight. On December 16th Jackson started throwing up his whole bottle; none of it would stay down. So the next day I took him right in and once again Dr. Porter looked at him. His original doctor was Smith who was always busy. He told me he had acid reflex, which that was wrong I later found out. He actually had a concussion. He prescribed some medicine for Jackson and told me to give the medicine a couple of days. The medicine kind of seemed like it was working, but he was still fussy, throwing up somewhat, and he had diarrhea. When I called to ask about it the nurse told me that was normal. The last day Brandi watched him was December 23rd. I was getting off at 8 pm and would be leaving for California. We went to go see Jason's family, the father of my kids. When i got to her house she already had Jackson in his car seat asleep. I left to go meet Jason at his house so we could start driving. Before we got to Twin Falls I asked Jason to please pull over I needed to check on Jackson he wasn't fussing at all. I pulled him out of his car seat and he had spit up with what looked like his brown medicine on him. So i changed him and talked to him, but he was acting strange. So we got back in the car and started driving again. I called my mother telling her about it, but she said maybe he was car sick? Before we got to Elko Nevada I had pulled Jackson out of his car seat and just held him. He wasn't eating or fussing. We got a hotel room, called Brandi to see if she noticed anything different, and also called the on call nurse. The on call nurse told me to try giving him 2 ounces of water, and Brandi didn't answer. I slept off and on through the night with Jackson laying right next to me and right on my chest. About 4 am Christmas Eve he started twitching on his right side. I was really freaked out so called the on call nurse once again, and she told me she would have to look at him to know what the twitching was. Brandi finally called me in the morning, but she said she noticed nothing and started to cry about her marital problems. I told her I would talk to her later, and kept calling the pediatrician. I never could get a hold of anyone, so I took a quick shower, and that's when they called. So I called them back but I got no one once again. I told Jason I just wanted to get him to a good hospital. So we started on our way again. From Elko to the top of Donner Pass I held Jackson the whole time. I was so worried I didn't want to put him down. He wasn't eating, babbling, and his right side would twitch. During the time I kept in touch with my mother, Jason's mother, my sister, and my best friend. I did get Jackson to drink 3 ounces of pedialyte and sprite mixed together. We had reached Elk Grove, California, where Jason's grandmother lived. We dropped off James and Jason's older sister. We then went to the emergency room. Jackson was so white and frail it was the worst I have seen my baby. When I got him in the E.R. they took his weight and I explained everything. He weighed 8 lbs, defiantly not normal for a 3 1/2 month old. We went into another room, explained everything 2 more times, and that's when Jackson had another twitching moment. The twitching was a seizure. He had another seizure and died right there in front of me. Everything happened so fast after that, so many doctors and nurses were running around. We went to another room where they started to work on Jackson. I couldn't stay since they were putting in a ventilator, so they put Jason and I in a little tiny room away from my baby. Wrong thing to do for a mama who loves her children. I started calling my little brother begging him to go wake up our parents to tell them Jackson stopped breathing. I couldn't handle it anymore so I went by Jackson's room. A nurse stood there with me and talked to try to calm me down. I finally got to go see my baby, but I had to leave so they could go to a cat scan. They then transferred him to U.C. Davis Hospital in Sacramento.

I never left his side. He had 4 doctors when we got to ICU, but not one thought he was going to make it. We got there at midnight Christmas day. I cried and cried and just held my little man's hand. I slept on a bed next to him. Later that day I left to go shower and see James. I ate dinner but wanted to leave the whole time. I watched James open some Christmas presents, and after that I left to go back. I took Jackson his stocking and glow worm I had gotten him for Christmas. I never wanted to leave him. I was a complete mess I couldn't finish my sentences and just cried.

On the 25th I did ask the doctor if it was shaken baby syndrome. He explained to me that his little brain was so bruised and so much blood was in his little head that his soft spot was no longer soft. it was hard as a rock and bulging out. I called my family right away to let them know. My sister flew out to put my head back on straight and to be there with me. Thank God I had her at that time; I would have never got everything straight. Words cannot express how thankful I am to her. On the 26th I had to make a decision to either put a tube in Jackson's head to drain the blood or not. Of course I chose the tube. So much blood came out of his little head. I couldn't hold him for a whole week because of the ventilator. He was sedated during that time, but I still told him all the time he was so strong and could make it through this. I would sing to him, tell him stories, talk about the future, and tell him how much I loved him. So many tests were done on him during that time, but we had to do it. January 2nd was the first day I got to hold him again; they had taken out the ventilator. That was the most wonderful feeling in the world I didn't want to put him down, but of course had to. We finally got to come home January 15th which was relief. A week after that I got Jackson to hold his own head up and he started moving his right side. A mother’s love does a lot of healing on its own. Our stay in the hospital Jackson got a great formula that helped him, Similac Alimentum, and he had to relearn how to eat. He couldn't move his right side and no longer could hold his head up. A respiratory and occupational therapist would come to see Jackson everyday. The occupational was to work on his eating with a bottle, no longer a feeding tube. We had many meetings with doctors to check on Jackson's progress and to make sure we understood everything. We learned that Jackson was shook the first time on the 8th of December that's when he got a fractured shoulder. The throwing up was a concussion, not acid reflex, and the last time he was shook was the last day she watched him, the 23rd. His little body couldn't take it anymore so he slowly started to die on me. She shook him so hard his brain was bruised from hitting his skull and his brain stem had been damaged. He does have permanent brain and stem damage to this day, but you would really never know. The doctors weren't sure if he would ever crawl, walk, or be able to talk, but he has proved he is a miracle. He is so strong and I'm so proud of him. He is the sweetest little man and has a gorgeous smile. Jackson goes to therapy twice a week for 2 hours each day. He has occupational and speech therapy, which has helped tremendously. He did have a balance issue, but that was due to the brain stem damage. His right eye now goes lazy so he wears a patch one hour a day along with trying to get him to wear glasses. I've seen such an improvement on him, that I thank God every day to letting me keep my miracle baby. He is currently 7 months behind on speech, but he will catch right up. He is so smart. For me it has been a challenge in life, but I stay strong for my kids. I do have nightmares of Brandi coming to my house and shaking Jackson again. I get paranoid a lot and only trust few to watch him or any of my kids. I do cry to this day, but its only because just the thought that I almost lost my baby just kills me. I just try not to dwell on the past, look towards a nice healthy future with my children, and give my babies hugs and kisses every day. I've also talked to other mothers of children who have either been survivors or victims of shaken baby syndrome. Everyone needs to know more and more about SBS than what they do. People just need to realize babies cry because that's their way of talking, and to just walk away if you can’t handle the crying anymore. Children are the most important to our future. So please pass the knowledge around to not shake a baby. It is murder and should have more punishment than what it does.

Watch LIVE April 14 - April 16 2011

2011-04-06T16:46:00.000-07:00

As many of you know we have been frantically preparing for the 5th Annual Shaken Baby Syndrome Candlelight Vigil! I will be posting many pictures on twitter and facebook(for the support network) and on my personal facebook, but I wanted to post here the live stream where you can view! You can also catch up on anything you may have missed by clicking HERE. Will be in Florida for 13 days, leaving on Monday and will be posting on and off through the entire journey to the vigil. THEN on Friday April 15th at 7:00p.m. EST you can come here, our website, or by clicking the link below to watch LIVE from the SBS Vigil!

Please check out http://www.ustream.tv/channel/shaken-baby-syndrome-candlelight-vigil-2011 to view all the videos, directly below the live stream on that page to see videos and clips of all the happenings from April 14-April16! We will be picking up 13 families at the airport all day Thursday and will begin broadcasting on and off from 12pm-3pm EST!

Thank you for ALL of your support! Look forward to sharing with you many memories ahead!

Love,

Rachel

Live Videos by Ustream

Riley, 4 years after being shaken

2011-03-26T20:15:00.000-07:00

Little Miss Riley, a beautiful strong little girl with a smile that will light an entire room. She continues daily to battle the effects of Shaken Baby Syndrome. Our thoughts and prayers for continued strength in these trying times go to not only Riley, but her parents as well. Now on to her beautiful, amazing story of hope, faith and love.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

My daughter was a healthy, happy, energetic, beautiful, social, and bright child. She was just over 2- years- old, and was hitting all of her milestones early. There were so many things Riley enjoyed doing- dancing, swimming, coloring, playing with her stickers and play doh (i.e. her “colors”) with daddy. Riley loved her “guys” (little figurines she carried everywhere with her) and her Disney shows and movies. Riley loved to look at books, and could tell me what every picture was. She loved playing with other kids. She had even learned counting in Spanish and some sign language. She loved being outdoors, going for walks, and going to the park to play on the swings and slides. Riley was honestly the model child, I couldn’t have asked for a more perfect little girl.

On March 27, 2007 our lives were changed forever at the hands of our day care provider, and family friend. The day started out as any other- we awoke in the morning, got ourselves ready, said our goodbyes, exchanged our kisses and “I love you’s” with Riley’s dad, and left on our way to the babysitter’s home. Before I left that day, I said goodbye and I love you to my little angel and gave her a kiss, as I always did. She was all smiles, in her new purple Gap velour sweatsuit holding on to her yellow sippee cup filled with milk, playing with one of her friends- I’ll never forget that vision, because I will never see my little girl in the same way again.

At about 12:20 PM, I received a phone call from our babysitter stating that something was wrong with my daughter, that she had been put down for a nap, and she wouldn’t wake up. My stomach dropped. I asked if she had called 9-1-1- she had not. I instructed her to do so and I immediately gathered my things and ran out of the building.

Riley was air lifted to Albany Medical Center that afternoon. It was in the ER that we learned Riley had suffered a traumatic brain injury- we were in shock. She was fine when we dropped her off. They informed us that she needed to be rushed into surgery to save her life, and we immediately gave permission to do so without another thought, anything to save our little girl.

The first of many miracles to come over the next year, Riley had made it through surgery- but she was not expected to survive much longer- her chances were slim. If she did survive, there was no way of knowing how she would be, but most likely, she would never be the same child again. The neurosurgeon explained the severity of her head injury and prepared us for the worst- we hoped for the best. We just wanted her to survive. Riley would be fighting for her life over the next few days.

We were living every parent’s worst nightmare. Riley was hooked up to a respirator, her little chest jerking up and down in an unnatural way. She had tubes coming out of her nose, mouth, chest and arms. She had bandages around her head where there were endless staples from her surgery- they had removed her left bone plate to allow her brain to swell, and they had shaved half of her hair off. There were monitors next to her bed that showed her heart rate, blood pressure, respiratory rates, and the amount of pressure in her head- the numbers appeared to be constantly changing. There were two poles behind her bed filled with medication delivery devices, at least 5 on each. She had two nurses assigned just to her, sitting right outside her door at all times, monitoring her care. Her little face was so swollen, her eyes were bruised and swelled shut and there was dried blood on her face. I couldn’t do anything other than stand there helplessly, hold her hand, pray and cry. We didn’t speak because the doctors said that she would try to hear us and it would strain her too much to try and focus on anything- they wanted her to rest. The room was dark and quiet except for the beeping of all those machines and the noise of the respirator.

During the next 3 months in the PICU, Riley defied the odds and was so strong, she endured more then any child should have to. Her heart stopped beating and she coded twice while I stood by and watched helplessly as doctors worked to revive my daughter- pumping her chest, injecting her with drugs, shocking her little heart. The second time in May of 2007, they had to put her back on the ventilator to help her breathe – at that time they also found a blood clot and spent over a week trying different drugs to regulate her heart rate and blood pressure. She faced surgeries to clean an infection from her brain, to replace her skull plate, to clean up her incision from the initial operation, to have a ventricle drain put in, to have a permanent shunt placed, to insert a feeding tube in her stomach (she had this surgery twice and went to the ER three times to have it corrected), she faced multiple infections in her blood and in her cranial fluid and spent over a month on antibiotics, she spiked high fevers, suffered morphine withdrawal (twice), had tremors so severe they prevented her from sleeping, she was also placed on methadone to help with drug withdrawal. I’ve lost count of the number of CT Scans, EEG’s, MRI’s and other medical procedures and tests Riley has had to suffer through. I stayed at the hospital with Riley the entire time, I couldn’t bring myself to leave her side, I was terrified that I was going to lose my daughter.

After leaving the PICU in June of 2007, Riley was finally transferred to a rehabilitation hospital. The first two weeks Riley didn’t do much other than cry both in and out of therapy. There was nothing we could do to soothe her. She was able to get some physical, occupational, speech and recreational therapy but it was very stressful and exhausting for everyone. She couldn’t eat any solid foods, and wouldn’t open her mouth for months. Riley was unable to hold her head up after so many months lying in bed and had no control of her neck or torso. She would drool all the time because she couldn’t swallow properly. She had a condition known as “drop foot” from lying down. Her hands also needed braces and were often stuck in a fist-like position. She would often “tone” which is when she would hold her whole body rigid and then cry. It was difficult to break her of this, and she still does it occasionally, even on medication to control it.

On top of all of Riley’s medical issues, my husband and I were considered suspects of this brutal crime, and were pulled from Riley’s bedside on countless occasions to be questioned and to make statements to police officers, social workers, attorneys, and Child Protective Service workers. We were forced to leave our daughter and endure reliving the most horrible experience of our lives over and over again, even on the stand at Grand Jury, Family Court, and finally, over a year later, at the Criminal Trial. Everything in our lives was put under a microscope- our parenting skills and style, our decisions, our family and friends, our pets, our love and care for our daughter. My husband and I eventually had to come to terms with the realization that our friend had in fact hurt our daughter. We’ve had to live with the guilt of leaving our daughter with someone we thought we trusted unconditionally, someone we loved, and someone we considered a friend. We went to trial in April 2008. Riley’s attacker was found guilty and sentenced to 18 years in state prison for the assault.

In over two years Riley hasn’t walked, fed herself, or sat up without assistance. She is finally able to say “hi” and “on”. She is legally blind and will face that challenge for the rest of her life. She must take seizure medication and muscle relaxers on a daily basis. She still cannot fully hold her head up for long periods of time, and she still needs to be held or be in a special chair or standing frame that holds her up. Riley is steadily making progress with her eating, and luckily the feeding tube is gone. We have purchased countless sets of braces for Riley’s legs, two special chairs for her to sit in, a special car seat, hand splints, endless medications, glasses and vision therapy. Riley has recently started potty training. She attends an integrated preschool program where she gets physical, occupational, speech, assistive technology and vision therapy. She has a one-on-one aide to assist her in every activity at pre-school. She still attends therapy at the hospital once per week to work on her walking, and is also enrolled in hippotherapy (horseback riding) and swim class. She has faced numerous dental appointments to correct oral issues sustained from months of breathing tubes and her tonic bite, by not allowing us to properly care for her teeth. Riley will have Botox treatments next month to help loosen some of her muscles.

Riley’s future is so uncertain, as is the nature of a traumatic brain injury. Every case is different. The brain controls everything, and the healing process is very slow. She faces years and years of continued therapy. My husband and I remain optimistic, because we love our daughter and refuse to believe that this is the way she will be forever. We want our daughter back. We will continue to provide Riley with everything she needs to work toward recovery, no matter what that entails. Every small accomplishment is huge for us. Her smile and laugh gets closer to the one we remember, a simple function that took Riley almost 8 months to gain back. We continue to hope. Riley has proven to be stronger then any other person I know, even at the age of 6. She is my inspiration. The doctors have prepared us for the worst case scenario- that Riley will stop improving, and that she will require assistance with everything for the remainder of her life. My husband and I realize that this may be Riley’s reality, but we choose to take each day as it comes, to be grateful that our daughter is still alive and with us, and to provide her with all of the love and support she deserves on this journey. We will deal with each issue as it comes and are still trying to pick up the pieces, focus on the future, and move on.

Jeremiah's Story

2011-03-25T11:15:00.000-07:00

Jeremiah was born on December 21st, 1997. He was an amazing baby. Every parents dream. He was never sick, never spit up and never cried. He was always laughing and smiling. Things changed for us on June 7th 1999. We had a family friend from Arizona come stay with us for the summer. My husband and I lived in Phoenix when I got pregnant with Jeremiah and decided we needed to be close to family back in Oregon. This was going to be my mom and dads first grandchild and they wanted us back here too. On June 6th 1999, Jeremiah was diagnosed with croup. So I decided to not send him to the regular babysitter. The family friend said he would watch him for a few hours till Jeremiahs dad came home. I left the house at about 3:00 so I could clock in at 3:30 pm. Well, I started work and it was like any other day. Untill the phone at my register rang. The woman on the other end told me to pick up the other line, that I had a call. It was his regualr baby sitter, telling me that she was calling an ambulance because Jeremiah wasnt breathing right. I said ok. She asked him which hospital did I want him taken to. I said to St John's Hospital in Longview, WA since they were the ones that diagnosed him with croup the day before. I grabbed my till and went down to the counting room. Everyone down there told me not to worry about it and to just go. I walked out of the counting room and they handed me the phone again. It was the babysitter again. (not the family friend) She told me that they had just left with him and were taking him to Emanual Trauma Unit. Then I knew it was more serious. But I did not expect what I heard when i got there. When I arrived, I waslked past 2 Portland police officers. But this was a main hospital in Portland and the police were always there. I walked in and saw the family friend there trying to spell our last name. He was acting like he was there for a sliver or something. But when the police and a case worker came up and asked me if I was Jeremiahs mother, I knew something was very very wrong.
I started yelling that I wanted to see my son and they said I couldn't. That he was being prepped for brain surgery to save his life. I should have said something to the family friend then, because thats when he curled up in a ball and started crying. But I didnt care. I just wanted to know what was going on. I called my husband and he came as soon as he could. He arrived right after my mother did. We sat in this room for 5 hours hearing occasional updates on his surgery. During this time, the detectives from the St Helens police department were pulling Jason out (family friend) they pulled me out, and Jeremiahs father. After the surgery, they told us that he was in his ICU room and that we could see him. We walked into his room and I couldnt believe what I saw. I didnt recognize my own son. I stood frozen. There were tubes comming out fo his head, IVs in his arm, a breathing tube in his mouth, and bruises. So many bruises. On his cheeks, his ears, his throat, and both eyes were black and blue. They started going over the worst case senario. He suffered a stroke to his left side, so he may never walk again. He had blood in front and behind both retnias, so he could be blind. He could have CP and seizures for the rest of his life. That was if he ever woke up from the self induced coma they put him in, so his brain can rest and heal. BUT..they never said the words "Shaken Baby Syndrome" Not yet anyway. Jason sat at our house for 4 days, eating our food, watching our TV, using our phone, while we sat at our sons bedside, praying every second of every day that he would pull through this. 3 days later, after going to get something to eat, I went back up to Jeremiahs room and the head nurse told me there was a phone call from some one named Tina. This was Jason's aunt. I called her back and she told me that Jason's mom had had a heart attack and that they had a plane ticket waiiting for him at the airport to fly him home. I called the St Helens police dept and told them what was told to me. They said dont do anything . We will take care of this . 4 hours later , 2 of Jeremiahs ICU doctors, 2 nurses and a case walker, walked into his room. They closed the sliding glass door to his room and closed the curtain. While they are walking in, the phone is ringing, I answered it. It was the detectives. They told me that they had just arrested Jason. It was like some one took a 2x4 to the back of my legs and to my chest. I hit the floor, sobbing. Jeremiah's dad hugged me screaming what was wrong and I told him Jason did this. Mike started heading for the door, when the doctors stopped him and said "You need to be here for your son right now, but we want you to know, this is what we call Shaken Baby Syndrome." They kept it from us for 4 days, while Jason sat at our house. I was mad because the whole time they were protecting Jason from my husband. Now I can see why they did, but at the time I was furious they didnt tell us.
We were at the hospital for 6 1/2 weeks. In this time, Jeremiah got his vision back, and was able to talk again. There still was no movement on his left side though, but that never slowed him down. We were home for about a month before Jeremiah started dragging himself to the couch to teach himself to walk again. And he did. He didn't give up. Jeremiah is 13 now and as tall as I am. When he was 5 he even played soccer. He doesn't have siezures. They did put a feeding tube in, but removed it 8 weeks later. By talking to him, you would never know anything ever happened to him. But you can see the trauma of it all. 4 scars on his head. His left arm is bent and his wrist hangs limp. He walks with a limp on his left side, but the wonderful doctors at Shriners are working on all that. They have already done one surgery to his arm and 2 to his leg. Funny, but when he finds out he has to have surgery again, he is ready for the video games to be brought to his bed. Since he's not upset by all of it, I can't be either. He keeps us all strong :) Jason was charged with 2nd degree assult and recieved 5 years 10 months. We didnt find out till court that Jeremiah was strangled right along with being shaken. He was also hit in the face and thrown to the floor. I am not sure who was looking out for my son, or who his guardian angel is, but I can't thank them enough. Sometimes life throws you in directions you cant control. Throws you in directions you hate. When I look into my sons eyes, I see his strength, his love, his compassion. And from that he teaches me. He is my super-hero.
Thank you for listening to his story . He thought that he was alone. That he was the only one that this had happened to. Untill we came across this website. Now he knows. God Bless each and every one of you and your families.
Mike , Dena , Jeremiah , Tyler

Gavin's Story

2011-03-23T13:11:00.000-07:00

Gavin was born on October 14th, 2009 at 6:14 pm. He weighed 6 lbs 10 oz and was 19 inches long. He was perfect. He was a healthy beautiful baby boy. Gavin was a happy baby. He always ate well, sometimes more than you would think an infant that small could eat. He took naps throughout the day like any other baby and only woke up at night to eat and then fell back asleep fairly quickly afterwards. He hardly ever cried and when he did he sounded more like the Aflac duck, than a baby crying. He was almost always quickly comforted with a new bottle or his favorite orange binkie he had had from the day he was born. He was what most people would consider an easy baby. His smile could easily light up the entire room and having him fall asleep on your chest was the best part of any day.

On December 21, nine and a half weeks after Gavin was born, we all got a phone call that you never want to get. Gavin was being rushed to the hospital in an ambulance because he wasn’t breathing. Members of the Appomattox Rescue Squad responded to the 911 call and we were later told it was one of their quickest response times ever. They performed CPR at the scene and kept Gavin stable in their transport to Lynchburg General. After arriving at the hospital, we all sat in a small waiting room where seconds felt like hours. We were then told Gavin would need to be transferred to Roanoke Memorial. I never knew Roanoke was so far away. That drive took several days at least. After arriving at the hospital, we were taken into another waiting room and sat down with a leading doctor in the NICU. There are many events from this story that will forever be etched in my memory but those few moments listening to that doctor tell us what had happened to Gavin that day will always be in the forefront of my mind. She told us Gavin had bleeding on his brain that was caused by a traumatic brain injury. She also told us the retinas of his eyes were detached and there was blood pooled behind them as well. She went on to tell us that this brain injury had in no way been caused by any type of accident. It was only later that the term “Shaken Baby Syndrome” was used to describe what had been done to Gavin.

The next six weeks that Gavin spent in the NICU at Roanoke Memorial are somewhat of a blur.

The first several days were the most critical. Gavin had several bouts of seizures and for the most part, was completely unresponsive. He was on a ventilator that was doing most of his breathing for him and he was being fed through a tube in his nose. Walking into his room for the first time was extremely difficult; seeing him lying in that big bed, so tiny, hooked up to several different machines with tubes and wires coming from all parts of his body. It’s an image that I will never forget. However, with each passing day, we were given more and more hope. On the 23rd, Gavin opened his eyes and moved his arms and legs a little bit. By Christmas Eve, he was breathing more on his own. Gavin spent his very first Christmas where no child should, lying in a hospital bed fighting for his life.

On December 26th, another tragedy struck the family hard. Gavin’s uncle Cody was killed in a car accident. While it all seemed practically unbearable, I believe God needed an angel to watch over Gavin and he chose Cody to do just that. Just a couple days later when Gavin was being talked to about Cody, he smiled for the very first time since being in the hospital. I truly believe Cody talks to Gavin and will always watch over him. By the first of January, Gavin was moving his arms and legs a lot. We were told it was the nerve damage causing his movements but we were just so happy to see him active. However, it was around this time that the leading neurological doctor in the NICU told us what she believed the outcome for Gavin would be. She said it was very likely that because of his brain damage, Gavin would never be a normal child. He would not meet developmental milestones. He would probably never walk or talk. It was very possible he would be blind and deaf forever. And there was a chance he could be in a vegetative state for the rest of his life. This was the most devastating news you could ever be told about someone you love. What else could we really do but put our faith in God and pray that this would not become a reality.
On January 6th, Gavin had surgery to have a trache put in for him to be able to breathe on his own and a feeding tube put in his stomach for him to able to eat. At this point, Gavin had no gag reflex nor could he swallow properly so the trach was necessary so we could suction his airway for him to breathe. After this surgery, Gavin’s face was tube free and it was a beautiful sight to see. On January 14th, Gavin was moved out of the NICU and to Kluge Children’s Rehabilitation Center in Charlottesville. This was very exciting as it showed Gavin had improved enough to begin therapy. Within the month he spent at Kluge, Gavin showed improvements working with his speech, physical, and occupational therapists every day and we learned to celebrate the small successes. Around this time, the doctors at UVA re-examined Gavin’s MRI scans which showed that he had older brain injuries that occurred before December 21st. They told us that Gavin had been shaken on a total of three to five different occasions. Because of this information, the investigation of Gavin’s injuries is still on-going. On February 12th, Gavin was released from Kluge and came home to his foster parents, his great-aunt and uncle. Patricia and Floyd Wood are who I consider to be two of Gavin’s angels as they are now his adoptive parents and quite possibly the best thing to ever happen to Gavin.

As of today, Gavin is a lively and extremely happy 16 month old. He can see perfectly fine. He hears everything that goes on around him. He smiles constantly. He even laughs when something is funny and I mean belly laughs to the point where he can hardly catch his breath. Gavin still has his trach and feeding tube; however, there is talk of possibly removing his trach sometime this year. He also has a button to place over his trach so he is now able to make noises, which are pretty much some of the sweetest sounds I’ve ever heard. Gavin is able to roll over and has enough head control to be able to sit in a specialized chair by himself. He is being fitted for leg braces and a chair for him to be able to stand up and hopefully walk one day. He is doing everything in his power to prove that doctor in Roanoke completely wrong. Gavin is nothing short of a miracle. He is one of God’s miracles.

Gavin has been a blessing in my life. I know he was placed in my life for many different reasons but I strongly believe that the main reason was to show me how amazing and powerful God truly is. Gavin, a nine week old baby, brought me closer to God. He made me believe. He showed me the true meaning of faith. Even in the worst of situations, especially in the worst of situations, God is always there with you. He has a plan for your life. And He will never leave you. Throughout all of this, I have come to rely on the Bible verse of Jeremiah 29:11 “For I know the plans I have for you, plans to prosper you and not to harm you, plans to give you hope and a future.” Because of this verse, I know God has a beautiful future planned for Gavin and for each one of us.
While I came here today to give this testimony to God, I also wanted to use this opportunity to educate you about Shaken Baby Syndrome. In America every year an estimated 1,200 - 1,400 children are shaken for whom treatment is sought. Of these tiny victims, 25 -30% die as a result of their injuries. The rest will have lifelong complications. Long-term consequences can include learning disabilities, physical disabilities, visual disabilities or blindness, hearing impairment, speech disabilities, Cerebral Palsy, seizures, behavior disorders, cognitive impairment, and even death. Often, perpetrators shake an infant or child out of frustration or anger. This most often occurs when the baby won't stop crying. I ask you today, please, if you ever get frustrated while holding a child, place them in a safe place and walk away. Take a few moments. Take some deep breaths. Do whatever you need to do to calm down before picking the child back up. It only takes a few seconds to permanently injure a child and change their life forever. It also only takes a few seconds to share this information with someone you know. Thank you for listening.

~Jenny

Coming Home - By Steffany DeWitt

2011-03-12T19:32:00.000-08:00

Families, Friends, and Supporters

I wanted to take this time to let you all know what is going on with me. As I am very happy and believe strongly in this network, I am taking the time to step back from the network for a while due to things that are coming up in my life right now. As some of you may not know, my husband Michael is currently deployed to Afghanistan and has been gone since March of 2010. I have not seen him but all of two weeks in the past year. Although, the network is very important to me, I have decided to step back and take the time in welcoming home my husband and get our life back together as it was before. Michael and I were married in November of 2009, and were only able to spend 5 months together before he deployed. Before we were married, due to him being in the Army we were only physically together a week. Right now I believe I need to take the time and focus on my family. As the network is very important to me, my husband and son are the most important things in my life right now. I am very excited to finally get to welcome home my husband. I am not leaving the network permanently; I am just stepping away for some time.

Although a lot of work has been done and I have been grateful enough to help, I unfortunately will be unable to attend the candlelight vigil this year. I will miss meeting you all, but I will be there in spirit. I am so happy that I have been able to help out with funding this year to the vigil and hope to return soon so we can get working on next year’s vigil as well.

I want to thank all of you for opening your arms and hearts for letting me be apart of a wonderful family. We all have been there for each other through thick and thin and my return will be better than ever. Again, know I am not leaving forever, just stepping away to take time for my husband, our son and myself. I am very excited to see what our future brings and hope to return to the network better than ever.

Thank you everyone!!

Steffany DeWitt
Mother to Dominic DeWitt-SBS Survivor

Dreams of a Princess - Chance of a Lifetime!

2011-03-11T21:05:00.000-08:00

Family and Friends,

As you all know, on February 19, 2011 my best friend and love of my life proposed to me. Through heartache, grief, loss, and the tragic death of my daughter Madilyne, I never knew my heart could love as it does today.

I moved to Little Rock from Florida in July 2009, after the great travel from FL to NYC to Arkansas, to journey on my life path to make a life from the dreams within my heart. After dedicating all of my heart, my time, and my effort into the Legacy presented by the beautiful life of Madilyne, I am thrilled to share this news with all of you concerning our engagement. An opportunity of a lifetime has presented itself to us, and wanted to ask for your help.

Jamie and I have entered this contest for a chance to win $100,000 for the wedding of our dreams with a celebrity wedding designer from Crate and Barrel! This is so exciting, but short notice, and will only take you 2 seconds to vote. Simply click the link below which will take you to our page on their website and click vote. One vote per person, and please pass along to all you know! We need at least 3000 votes in the next 20 days to be in the top 100 that will go to a judging panel and winner will be announced in June 2011!

This is very exciting as an opportunity to not just have the wedding of our dreams, but also have ALL of our friends and family in attendance as this will help with travel accommodations for those near and far!

Thank you for your vote and keep passing along, we don't usually ask for something as such but this would truly be such a blessing for not only us, but for the memories we hope to share with everyone in March 2012!

Here is the link - http://www.ultimateweddingcontest.com/entry/153006

Love you all!
Jamie and Rachel
Mother to Madilyne <3 SBS Victim Age 10 months

SBS T-shirts and Merchandise Now on Sale!

2011-01-21T22:55:00.000-08:00

Hello!

Just wanted to post a quick blog note to all of our readers to let you know that the 5th Annual Shaken Baby Syndrome Candlelight Vigil t-shirts and merchandise is now on sale on our website! This year we added long sleeve shirt options, as well as a few new items as well! Be sure to stop by our merchandise page at www.shakenbabysupport.com and help fund family's travel expenses to attend this years vigil in Sarasota Florida April 15, 2011 at 7pm. No contribution is too small be it donation or by purchasing merchandise. We need YOU to make this our biggest and best vigil yet! More information is available on our website as well concerning this event!

Sponsorships are available as well by contacting Rachel, at rachel@sbssupportnetwork.com. There are MANY levels as well as services needed. Please take a moment to read the letter below concerning this years event!

________________________________________________________________________________

Light the Sky

5th Annual
Shaken Baby Syndrome Candlelight Vigil
Sarasota, Florida

You are cordially invited to the 5th Annual Shaken Baby Syndrome Candlelight Vigil in Sarasota Florida, April 15, 2011 7:00p.m. Suncoast Family Life Center, 8000 Hawkins Rd, Sarasota Florida 34241. This year we are gathering the top advocates in Child Abuse and Shaken Baby Syndrome Prevention to speak to the families affected and the general public to bring attention to the severity and increasing cases of Shaken Baby Syndrome in our nation today.

On April 15, 2011, SBS Survivors and Victims families will fly in from across the globe to attend this event.

The mission of the Annual Candlelight Vigil is to bring together families with shared circumstances and raise awareness about Shaken Baby Syndrome. Information regarding medical treatment and therapy assistance, as well as information on how to handle grief will be available to all who attend. This event also works to establish a support system for families of SBS victims and survivors. By linking families together who have shared this traumatic experience, we can help each other to learn, to grow, and to prevent this from happening to other innocent children.

The Shaken Baby Syndrome Support Network Inc. are asking you to empower victim and survivor families and sponsor a family waiting to attend or donate items needed to ensure this vigil is a great success. Together we can help families dealing with extreme life changing events to comfort their hearts so they can maintain a life unforeseeable after the tragedy of Shaken Baby Syndrome has come forth in their lives.

For the families ongoing healing and support process, Child Abuse and Shaken Baby Syndrome Advocates from across the United States will be present for this event to speak to the families and provide insight into the steps for a healthy transition as these families walk through the grief, and anger associated with this tragedy.

We invite each and every one of you to meet these families April 15, 2011 in Sarasota Florida at the 5th Annual SBS Candlelight Vigil. The Network welcomes speakers to include, Major Connie Shingledecker - FBI National Academy 185th Investigative Bureau Chief Manatee County Sheriff's Office, Christina K. Farnsworth – Victim Advocate Coordinator Sarasota County Sheriff’s Office, Darryl Gibbs – educator, lecturer, and legislative advocate Founder Cynthia Gibbs Foundation and Victim’s Advocate- Homicide Specialist for the Westchester County District Attorney’s Office in New York State, Scott Juceam – Father to Hannah Rose Juceam, and Founder of the Hannah Rose Juceam Foundation, Janet Goree – Grandmother to Kimberlin West and early childhood educator/SBS Advocate, Patrick Donohue - Father to Sarah Jane Donohue and Founder of the Sarah Jane Brain Foundation, and many more to be announced in the coming months! We hope to see you there!

Registration and Sponsorship forms are attached for your use and please visit our website for additional information. http://www.shakenbabysupport.com

We thank you for your support, and please call with any questions or additional information at 877.571.4675 or email rachel@sbssupportnetwork.com

Sincerely,

Rachel A. Sumner
Shaken Baby Syndrome Support Network Inc.
Founder/CEO

Now Taking Child Names for Vigil T-shirts! (AWESOME OPPORTUNITY!)

2011-01-11T18:13:00.000-08:00

(consent form enclosed at the bottom. Please read ALL information prior to submitting request)

We are currently taking names for our 2011 5th Annual Shaken Baby Syndrome Candlelight Vigil. These t-shirts display the names of victims and survivors. This consent form must be submitted by emailing angela@sbssupportnetwork.com. Due to privacy reasons, this has to be submitted by the parent, grandparent, or guardian of our hero. We will continue to take names until January 30th, 2011 but only have a limited about of spots on the t-shirt. You will not receive a confirmation email unfortunately, however you can check the t-shirts as always on our website, blog, FB group page, or through our member page on our website.

Each year we gather names for our t-shirts and this is a first come first serve basis. The names are placed on the t-shirt in *no* particular order, as we usually in the final proof, list in the order of alternating gender of the child. At some point we may be unable to do so, but know these t-shirts are just as important to you, and we will verify with you by sending the final graphic in a email for you to ensure your child's name in spelled correctly.

These t-shirts are sold to fund the Annual Candlelight Vigil, and to provide scholarships to families on our waiting list to attend. Our wait list currently has 57 families, and you can sign up by submitting an email to permission@sbssupportnetwork.com with your name, address, telephone number, relationship to child, child's name, your phone number, and closest international/national airport.

The t-shirts go on sale February 15th, and are made to order. When you place your order you are guaranteed your shirt by the date of the vigil. The last day to order is March 30th. The price of the t-shirts will be the same as previous years, and we will have children's sizes available after our first order of adult t-shirts.

Adult Small-XL $20.00

Adult XXL- $22.00

Adult XXXL - $24.00

These prices *include* shipping.

Please pass along this information to all hands, and we hope we can Light the Sky in April 2011 for all the victims and survivors of Shaken Baby Syndrome, and Child Abuse!

Thank you,

Rachel

rachel@sbssupportnetwork.com

______________________________________________________________

Consent Form

I, (Your Name) give permission to the Shaken Baby Syndrome Support Network to use (Childs Name) name on the t-shirts in support of the 5th Annual Shaken Baby Syndrome Candlelight Vigil to be held in Sarasota Florida Friday April 15th, 2011 at 7pm.

Thank you,

(Your Name)

(Your Address)

(Your Email)

(Your Phone Number)

(Relationship to Child)

-Light the Sky- 5th Annual Shaken Baby Syndrome Candlelight Vigil

2010-12-08T20:41:00.000-08:00

Happy Holidays from all of us at the Shaken Baby Syndrome Support Network. As a way to bring in the Holidays, and the joy of this time of year, we are announcing all of the information surrounding the 5th Annual Shaken Baby Syndrome Candlelight Vigil. If you would like to give the best gift this Holiday Season, that can continue for many years to come, sponsor a family to attend this event to form the steps for the forever grieving hearts the families bear 365 days a year..

Contact Rachel at rachel@sbssupportnetwork.com to make this happen. We currently have families preparing to sign up for this year. Give the gift that continues to give this Holiday Season for many years to come!

5th Annual
Shaken Baby Syndrome Candlelight Vigil
Sarasota, Florida

You are cordially invited to the 5th Annual Shaken Baby Syndrome Candlelight Vigil in Sarasota Florida, April 15, 2011 7:00p.m. Suncoast Family Life Center, 8000 Hawkins Rd, Sarasota Florida 34241. This year we are gathering the top advocates in Child Abuse and Shaken Baby Syndrome Prevention to speak to the families affected and the general public to bring attention to the severity and increasing cases of Shaken Baby Syndrome in our nation today.

On April 15, 2011, SBS Survivors and Victims families will fly in from across the globe to attend this event.

The mission of the Annual Candlelight Vigil is to bring together families with shared circumstances and raise awareness about Shaken Baby Syndrome. During the vigil, the Candlelight volunteers hope to provide a broad range of information and assistance to families of those affected by Shaken Baby Syndrome. The vigil provides a unique opportunity for families of SBS victims and survivors to come together and share their experience and their knowledge. Information regarding medical treatment and therapy assistance, as well as information on how to handle grief will be available to all who attend. The Candlelight Vigil also works to establish a support system for families of SBS victims and survivors. By linking families together who have shared this traumatic experience, we can help each other to learn, to grow, and to prevent this from happening to other innocent children.

We, the Shaken Baby Syndrome Support Network Inc. are asking you to empower victim and survivor families and sponsor a family waiting to attend or donate items needed to ensure this vigil is a great success. Together we can help families dealing with extreme life changing events to comfort their hearts so they can maintain a life unforeseeable after the tragedy of Shaken Baby Syndrome has come forth in their lives.

Registration and Sponsorship forms are available for you by emailing permission@sbssupportnetwork.com and please visit our website for additional information. http://www.shakenbabysupport.com

We thank you for your support, and please call with any questions or additional information at 877.571.4675 or email rachel@sbssupportnetwork.com
____________________________________________________________________________________

Applying for Scholarship:

The Scholarship for travel sponsorship is for families affected by Shaken Baby Syndrome. You are provided with 1 plane ticket per family. If you were sponsored to attend the vigil the immediate previous year, you would not be eligible for funding for a minimum of 2 years to allow families who continue to wait on our revolving list.
The way the process is expedited is a first come first serve process. We carry over names each year, but you will be advised when you inquire as to what number on the most current list your standing is. You can inquire at any time via the contact us page at http://www.shakenbabysupport.com

Once your in position on the list for a scholarship, you will be contacted directly by Rachel to make arrangements and give you information.

This event is solely funded by the sales of t-shirts to go on sale starting February 1, 2011. You can help us make this event a success and secure your position by the sale of t-shirts to raise awareness all across the Globe.

To sign up for a scholarship to attend the 2011 Vigil in Sarasota Florida, you will need to submit the following information to: permission@sbssupportnetwork.com

Your Full Name:
Mailing Address:
Phone Number:
Email Address:
Child Affected by SBS Full Name:
Victim or Survivor:
Relationship to Child:
Best Time to Contact You:

What is provided? 1 airline ticket is provided per SBS family. You can decide between you who you choose to attend. Once the decision is made, you will need to get in contact with Rachel directly at Rachel@sbssupportnetwork.com for other arrangements.

Events include:
Potluck dinner – 7pm Thursday April 14th, 2011 (6137 Approach Rd, Sarasota FL 34238)
Vigil – 7pm Friday April 15th, 2011
Saturday – Beach BBQ! All Family, Friends, and Supporters Invited!

Local Hotels:
*Please note, no prior arrangements are being made to “block” rooms for this event as the suggested attendance is unknown*
Country Inn and Suites
5730 Gantt Road
Sarasota, FL 34233
(941) 925-0631

Comfort Inn
5778 Clark Road
Sarasota, FL 34238
(941) 921-7750

Hilton Garden Inn
8270 N. Tamiami Trail
Sarasota, FL 34243
(941) 552-1100

Local Airports:
Tampa International Airport
Sarasota International Airport
*Please note, transportation is provided for this event, and to and from the airport, but please contact Rachel prior.

____________________________________________________________________________________

5th Annual Shaken Baby Syndrome Candlelight Vigil
April 15, 2011 7:00p.m.

Location: Suncoast Family Life Center 8000 Hawkins Rd. Sarasota Florida 34241

SPONSORSHIP OPPORTUNITIES

Platinum Sponsor $2,000 5 Surviving Families to attend sponsored by you.Recognition of Platinum SponsorFull page in Event ProgramFront Stage Banner Placement at EventLogo on all t-shirts sold internationally.Logo in all advertisement tv/news/newspaper
Gold Sponsor $1,500 10 rooms for family hospitality sponsored by you.Advertisement on our website and all social sites.Logo on Event Banner at Event.Logo on all t-shirts sold internationally.Logo in all advertisement tv/news/newspaper
Silver Sponsor $1,000 Sponsored by you, transportation to and from airport and event for the families.Logo on Event Banner at Event.Logo on all t-shirts sold internationally.
Bronze Sponsor $500 Round trip flight for an SBS Family Member to attend.Transportation, meals, and t-shirt included.Logo on Event Banner at EventLogo on all t-shirts sold internationally.

Additional Sponsorship Opportunities Available: Entertainment/Beverage Service/Catering/Desserts/Banners/Flyers/Printing Services/T-Shirts/Event Favors
Unable to attend, but I do want to help” Enclosed is a contribution of $_______________

Level of Sponsorship: ________________________________________________________
Name__________________________________ Title_______________________________
Company__________________________________________________________________
Address____________________________________________________________________
Phone Number____________________________________________
Fax Number ______________________________________________
Email Address__________________________________________________

Please indicate how you would like your company to be recognized, and email your logo to rachel@sbssupportnetwork.com

Please make checks payable to:
Shaken Baby Syndrome Support Network
PO Box 21693
Little Rock, Arkansas 72221
Phone: (877) 571 4675 / email: rachel@sbssupportnetwork.com
http://www.shakenbabysupport.com

The Shaken Baby Syndrome Support Network is incorporated in the State of Arkansas and is not currently a 501 c 3 organization. The Network is striving to obtain our non-profit status.

"I Get to Witness Miracles Everyday"

2010-11-05T11:35:00.000-07:00

***The information in this story may be graphic and hard to handle, please use caution when reading. Names have been changed to protect the identity of the people involved. However, if you need to contact this family, please leave a comment OR send an email requesting contact to sbsvigil@aol.com ***

My (really long) Story
My beautiful daughter “Angel” was born January 1995. I had never been happier in my life. I loved my new baby and I loved her father with all my heart. One day in March 1995, as I drove to work I thought to myself, ‘I can’t think of one thing that would make me happier than I am right now’.
My daughter had been having bouts of colic so I went home for lunch every day. This day was unlike any other day. She was crying but that was to be expected; she’d been crying for a couple weeks. I’d been in contact with her pediatrician who wouldn’t see her saying I was just a nervous new mother and told me to change her formula, change her feeding position etc. I fed her, gave her a hug and a kiss and asked her father if he was ok or needed me to stay home to give him a break…he said he was fine. He was going to take her for a walk.
When I returned from work that evening her father was busy in the kitchen getting ready to put dinner on the grill. He stopped his work for a couple minutes and followed me into the bedroom to check on the baby. The lights were low, she appeared to be sleeping and it was quiet. It didn’t take me long to realize her father’s behavior was erratic and very unlike himself. He kept telling me to keep an eye on her, that she’d been breathing strangely and followed that up with a revelation I didn’t expect. He told me he had a brother who died who had been breathing like her. I had never heard of any brother but he had me so concerned I didn’t take the time to ask questions. He left the room and I moved closer to see what he was talking about. As I stood over her I realized her eyes weren’t closed and then I saw something brown coming from her mouth. I picked her up and she didn’t respond, she didn’t wake up, she didn’t do anything. I panicked started moving her around to get her to wake up and she started convulsing and screaming this blood curdling high pitch scream and her body bent so far back it seemed an inhuman ability, and then she went limp and silent. I didn’t think, I just reacted. I put her in her car seat, grabbed my keys, ran outside to the bbq and told her father we were going to the hospital NOW! He started freaking out. He threw furniture and seemed like he was out of his mind. I really wasn’t focusing on him I was so scarred for my daughter.
We arrived at the hospital around 7pm and they took her in immediately but I couldn’t give them the information they needed to help her because I didn’t know what was wrong. Her father’s behavior escalated. He grew more and more agitated and more and more dangerous. He started threatening doctors and staff whenever “Angel” would cry while they were poking and prodding looking for an answer. As the night wore on I got to a place where I didn’t recognize him at all. He wasn’t the gentle loving man I loved. He was angry and aggressive and I was afraid. The hospital staff was so concerned they posted a security guard outside of our room. They came in around midnight and said they were going to do a cat scan because they ran out of tests they could do. I went it to the room and watched as they were doing the test and while I’m not familiar with what I was looking at I knew what I was looking at was bad…really bad.
Then the tech turned to me and asked…”what happened to this baby?!” Lights came on, bells went off…my entire night flashed before my eyes and I knew what was wrong with my baby and I knew what was wrong with her father. I went on autopilot. I couldn’t lose it, I couldn’t break down, I couldn’t think straight. The doctors came in and while they were telling me the only way this injury could have happened was by violent shaking I could barely hear them. I felt myself falling and falling and it felt like it would never end. I carried my daughter back to our room where her father was waiting and pacing. He asked me what they said while pacing like a caged animal.
I was afraid. I sat in the chair with “Angel” in my lap and told him they said she’d been violently shaken. He said, “You think I did this!”, picked up the hospital bed and threw it on me. I ducked to shield my baby and it landed across my back. The security guard immediately removed him from the building. I was fine and “Angel” was unhurt in his attack. Someone came in and told me he’d been removed and wouldn’t be allowed back inside and they had called the police. I was somewhat relieved but at the same time everything was a blur. I didn’t know what was happening or what was going to happen. A parade of doctors and nurses came into room.
They proceeded to tell me they didn’t have the facilities needed to care for my daughter and she was going to be transferred to another hospital and that I could go with her and they quickly started preparing us for the ambulance ride. As they were strapping me onto the gurney and placing my daughter into my lap the police arrived and proceeded to question me. They questioned me as if they believed I was the person who did this and kept telling me I needed to tell them the truth, that I did it. I kept telling them I wasn’t home and I didn’t know what happened until the doctors did the cat scan. They said they were going outside to question her father and I needed to rethink my statement and they would be back. They were gone I don’t know how long but when they came back they took my daughter from my arms, removed me from the gurney and told me she was no longer mine and if I ever wanted to see her again I would do exactly what they said…go home with her father and wait for children’s services to contact us. I begged, I pled, a cried, and begged again. I told them I couldn’t go with him, that he’d already attacked me and I was afraid. I followed them and kept begging but they said I wasn’t their concern and then they left.
I ran to my car. I tried to get out of there without her father seeing me but he saw me and he got into the car before I could lock the doors. I didn’t know what to do so I drove and I avoided his questions. A couple blocks from home he flipped out saying I believed he did this and that I was going to abandon him and then got out of the car. I went home to our apartment building, ran upstairs and grabbed clothes and tried to get out before he got there but I didn’t make it. He saw me going down the back stairs and chased me. At first I was worried about waking the neighbors and making a scene. When I realized he wasn’t going to allow me to leave and that he had every intention of hurting me to prevent me from leaving I agreed to go back upstairs thinking I could get to the phone. I ran for the phone and dialed 911 but he took it from me before it even rang and broke it into a thousand pieces by beating it against his chest. He then grabbed me by the throat, lifted me off the couch and hung me against the wall. I tried to fight but I couldn’t reach anything so I grabbed him where it hurts and twisted as hard as I could. He didn’t flinch…not even a little. He just got angrier. He let me go but then started punch holes in the wall around my head. I flipped. I didn’t care about waking the neighbors. I screamed and pounded on the walls and yelled for help. It was 1am and I figured help would come. It didn’t. He couldn’t have me making so much noise. He threw me down on the floor, grabbed my throat and wouldn’t let go. I believed I was dead. I don’t know how much time passed but I woke up and started screaming again. He grabbed me and drug me into the bedroom and pushed me into the closet. I screamed and pounded as loud as I could for as long as I could until I had no voice left and no energy. He kept coming in and punching holes in the walls by my head telling me to be quiet and trying to get me to tell him I didn’t believe he could do this. The rest of the night is a blur. I don’t remember much except when it got quiet and he stopped coming. I snuck out of the closet and found he was sleeping on the couch. I grabbed my keys, opened to door as quietly as I could and ran. I was a mess and I didn’t know what to do so I went back to the hospital.
They saw me walk in and saw their faces looking at me and heard them saying, “oh my god”. They checked me out and outside of all the cuts and bruises I was ok. They said they had to call the police which they did. Imagine my surprise when the same 2 officers who took my daughter from my arms and told me she was no longer my child showed up. They laughed and joked about how I got what I had coming to me all the while photographing my injuries. They told me I got what I deserved and left. They went to my apartment and arrested my daughter father but I didn’t feel safe so I couldn’t go back there.
I couldn’t go see my daughter. I couldn’t call and find out how she was. All I could do was wait. I waited for 2 days with no information. After children’s services came to interview me I was told I would only be allowed supervised visitation with my daughter. I didn’t understand but I didn’t care. I just needed to see her. I went to the hospital and they put me in a room with several doctors and a social worker who proceeded to tell me they needed to explain what I was about to see. The doctors explained the extent of her injuries and that she was in a coma and they didn’t know if she would survive or what her quality of life would be if she survived. At the end of the interview the social worker turned to me and said…”so you’ve done this before?” I was dumbfounded and confused by her question and very angry that she would even ask such a thing. She proceeded to tell me that the officers who accompanied her when she was transferred told them I had done this and I had done this to my other child. I’m not really sure what I said or how I reacted. I was so angry and appalled I just talked and she listened. She said she believed me but she had to go by the court order and only allow me to see my daughter while being supervised. I didn’t care I just needed to see her.
I walked into picu and there was my baby so tiny and helpless with so many tubes and wires; so many that there was hardly a place to be able to touch her. I couldn’t pick her up or hold her. I could only stand by her bed and look at her and stroke her little arm and talk to her. I would talk to her for hours. After a couple weeks I was able to hold her but with all the tubes and wires it wasn’t easy. After another week they decided to allow her to wake from her induced coma. They didn’t know what would happen, if she would be able to breathe on her own and if she could if she would be able to eat. They prepared me for the worst. She woke up, she breathed on her own, she opened her eyes, she cried. They brought me a bottle and she ate. I was so relieved. They gave her medication for her pain and she went to sleep. I left the hospital to go home and shower and upon my return she was back on all the machines and back in a coma. They said her vitals were crashing and they had to do what they had to do. A few days later they removed the machines and woke her again. Again she did wonderfully and this time she didn’t crash. She stayed in the hospital another week. Upon her release they gave me her prognosis. She would never walk or talk; she was blind and would be in a chronic vegetative state for the rest of her life. And then, they sent me on my way. With the help of the social worker at the hospital my daughter was released into my care although she was still not mine according to the courts. I spent the next year in court to clear my name and get full custody back. That’s another long story but ultimately I have full custody back and her father got 10 years total for what he did to her and me. He was released after 8 ½ years. During his incarceration he continued to violate court orders not to contact me sending letters expressing how he believed we would be a family again. I reported it but they said there was no imminent danger and refused to do anything about it. When I heard he was going to be released I moved out of state and changed my name. So many people said I was being melodramatic and he wasn’t going to come looking for us after so much time. The day he was released my phone started ringing. Friends started calling telling me he’d been to their homes looking for me. I called his parole officer but I am unsure what happened from there. I didn’t want him to find out where I was. “Angel” is now 15 and I am using an alias for my daughter still because we live in fear he will one day find us. Just writing this I know can be dangerous but after living in fear for so long, a few months ago I decided he wasn’t going to take my whole life. I believe our story could help someone and it needed to be told.
As I said, “Angel” is now 15. She is not blind, she can say, “good girl”, “I go school”, “I got you” and “I love you” . She learned to crawl when she was 7 and now walks on her knees. Although she’s essentially nonverbal she’s a very social girl and as far as I’m concerned she’s multilingual. She understands English and Spanish and is quite adept at teaching anyone who spends time with her her own language. She’s very smart and she’s still learning and progressing. I think she gets a kick out of proving the medical community wrong. All in all she is no vegetable. She loves music, it’s her life. She also loves swimming and walking in her walker and riding in the car. We don’t really focus on what she can’t do because it’s so much more satisfying to focus on what she can do. I admit for years I didn’t understand how something like this could happen. It was difficult having my entire life ripped out from under me in the blink of an eye. At first I was numb and overwhelmed. Then came the self pity and guilt over feeling self pity. Then came the anger. All the while I had this beautiful brilliant girl doing everything in her power to tell me she’s an angel incarnate. She has a gift that not many people have. She has the ability to get everyone she meets to fall in love with her. Being unable to carry a conversation I have to say she amazes me how easy she makes it look. So now that the numbness, anger and self pity have passed I know I’m the luckiest mom. I get to witness miracles every single day and I’m so happy and proud to be the mom of an SBS survivor.

Shaun Dean's Story

2010-10-11T14:38:00.000-07:00

Nine years ago my son was a victim of SBS. I was a very young mother and very scared. It's been one hard road and continues to be one. Shaun to this date has CP in the right side of his body, seizures, and AFO, and ADHD with a long list of additional medical problems. However, we never see that, he's beautiful, personable and he's everyone's best friend! We are very grateful. Sometimes tears and sometimes pain. This has changed his life, as well as mine. We are very appreciative of the small things that people don't notice. People stare, they talk, but we don't care! Today I major in Social Work and do my best to support others, not just the vitims of child abuse, but of all abuse. We never got an answer of why, but one day he will have to explain it to Shaun.

Why did you hurt him
As precious as he is
What did your eyes see
That mine never noticed
His days are now ruined
Following your empty mistake
He is but a weary child
A baby of God
Why did you do this
As you happily proceed
Do you not regret you actions
Shall he always be in pain

(I wrote this about 7 years ago. Please dont take it literally, some lines are just a feeling I had at the time.)

Kristina Timmons

The Last Day to Order your shirt

2010-10-10T12:20:00.000-07:00

This shirt has the names of both survivors and victims of Shaken Baby Syndrome that is in the shape of a blue ribbon on the back of the t-shirt. It is for these families that we raise the awareness, we honor each victim, each survivor. If you have yet to order, please know that today is the very LAST chance you can order it.

Price Break : There will be a price break for t-shirts purchased in quantities of 25or more. contact Rachel as well for price break information.

The children names displayed on the t-shirts for the fall season are as follows.

These names were submitted with your permission to be added, and are not chosen, as names are taken until the space is filled.

Olvia Kangas

Jacob Whittemore

Gavin Scott Bailess

MeKenna Sharee Brown

Cynthia Gibbs

Tyler Wade Gruhler

Zachariah Goodwin

Emily Rose

Michael Blair

Scott Craig III

Juliana Thaxton

Evalee Jonsen

Duncan Nathaniel Youngblood

Loyce Darlene-Marie Decker

Bryan Parker

Kyle Mitchell

Aaron Cherry

D'Mitri Young

Alexis Vazquez

Joshual Andrew "Tre" Arnold

Alex "Braveheart" Batista

Thomas Chase Sullivan

Camryn Jakeb Wilson

Riley Grace Gilbert

Bradyn Springton

Kassica Ashley Harp

Trevor Anderson-Drews

Nicholos Richard Simpson

Jasmine Christine Coombs

James Michael Nolan Hutchinson

Zephyrus Atiyyah Llud McCartney

Anthony Ceiling

Nicolette Jo Klinker

Preston Garret

Dylan Taylor Haynes

Seraphina Bernardi

Lorelei Leigh Castello

Lily Grace Spataro

Miranda Joy Raymond

Meagen Hope Arnold

Joesp "Billy" Williams

Joshua C. Stewart-True

Hunter Burry

Sophia Salamone

Dustin Crockett

Colby Thompson

Bryce McCormick

Kaleb Schwade

Brynden Tyler Gibson

Dominic Jason DeWitt

Daniella Westlin

Austin Thelen

Austin Childress

Cheyanne Addison Huffines

Madilyne Christine Wentz

Isabella Tatianna Servin

Tyler Edward Arnold

Alan Brady Hines

Blake Murphy

Eli Hegwood

As always, you can also send in your order by Money Order only to:

Shaken Baby Syndrome Support Network
P.O. Box 21693
Little Rock, AR 72221

All sales from the t-shirts will go towards our $15,000 goal for to fund 100 families at the 2011 5th Annual Shaken Baby Syndrome Candlelight Vigil in Florida April 2011. Please be sure to donate today and help us meet our goal to help those lost in destruction due to Shaken Baby Syndrome.

If you have any questions or concerns you can always email us at contactus@sbssupportnetwork.com or call us today for support or concerns at 501.246.2917

To order your shirt, please head on over to www.sbssupportnetwork.com click on the merchandise tab, and order away! :)

Thank you, and have an amazing day, and upcoming week <3

And the Winner IS.....

2010-09-30T22:06:00.000-07:00

Dominic DeWitt - 272 votes
Madilyne Wentz - 251 votes
Duncan Youngblood - 15 votes
Juliana Thaxton - 1775 votes
Lilyana Stevens - 2 votes
Kyle Mitchell - 87 votes
Cameron Cole Critchlow - 11 votes
Madalynn Lowry - 2020 votes
Riley Gilbert - 550 votes
Xavier Delgado - 2396 votes
Zariah Warlick - 10 votes
Jasmine Lynn Steen - 1 vote
Daniella Westlin - 25 votes

To ALL the Families affected by Shaken Baby Syndrome, To all Participants in the Contest, and to all of our families, friends, and supporters;

I am so incredibly sorry that this update came delayed, this has been very overwhelming for me. Your response to this contest has been amazing, and I want to thank you ALL. Each one of you are helping over 4,000 families, and sadly the number is growing each and everyday, but we are there when destruction occurs.

The emotional last weeks of this contest, and especially the extremely emotional last 15 minutes was simply amazing. Because of this contest, we have enough funding for our families, and enough funds to re-consider the opportunity to give all the families extra support launching our official network system to link families together with others in comparable situations. Most importantly we have raised the funds to bring so many families together for the 2011 5th Annual Shaken Baby Syndrome Candlelight Vigil in Sarasota Florida April 15, 2011.

God Bless you all for everything and Congratulations to the Family of Xavier Delgado <3

We guarantee this will no longer be a silencer of our childrens voices.

Love,

Rachel

rachel@sbssupportnetwork.com

~The Fire Thrown and Stones Cast~

2010-09-13T14:04:00.000-07:00

Lately there has been so much going on, I wanted to take a moment, open my heart, and give some words to all of you, that will hopefully help you in your time of need.

There are so many times in just everyday life where we are threatened, hurt, kicked when we feel at our lowest, and only a few hands that help life us up, get back on our feet. This blog is going to tell you about that for me, and how I live with Shaken Baby Syndrome, and murder everyday.

Every single day I am in a constant battle with the demons inside my heart that are doing extreme exercises due to the anger that constantly sweeps my life because of the death of my daughter Madilyne. Every single day I get up, and I am faced with the fire thrown below my feet that I am forced to walk on because of personal and public attacks on me as a person. I never understood that even trying to do good in your life, there are attacks that come with that. I, as well as anyone else wanting to make a huge change, must learn how to block the stones, and walk through the fire.

When the letters of attack present themselves, the phone calls of hatred, and the constant way I should change what I should do in my personal life, as well as in my dreams, and the constant force of so many around me who do not believe in me I have learned that when I feel this time is coming close to me, to shut the door as a courteous behind those that don't believe in me, the ones that want to cause me and my family harm, and not read more than the first line of a letter of hate.

TV is no longer a pleasure for me. This is by choice, I know the numbers are growing everyday, I can not stop it, but I can stand firm in my shoes, and speak as loud as I possibly can, even when my voice breaks. You will hear me.. and all of the families, I can promise you that, so you might as well start listening now.

There are times as a grieving parent that you are attacked, you are taken for granted, the stones and fire are thrown at you, and I will say this to you. If you allow the negativity to prevail in your life, there will not be a brighter future for you. Do not continue to focus on the negative, that is not what your child wants. When someone tells you they know exactly how you feel, stop them, correct them, and move on. The stones, the fire, are all poison to you and your life, and you can choose to accept them. The choice in yours, once you give them back to those casting them upon you, your entire life can change.

There will never be an understanding in my heart, especially when families want to know how I deal, how I do what I do, and how I continue so positive. There is no understanding there is no answer other than determination and becoming numb to the fact that I have accepted that each day is another band aid ripped off my skin, and though the pain hurts, I become used to the fact that this is what my life is. So many look at the pictures of my life, and assume everything is whole, everything is in tact, and everything is perfect. To step into the shoes I have now, it took attempted suicides, severe drug use, alcohol abuse, domestic violence, and the self inflicted pain I subjected myself to dragging my nails up and down my face to remove the mask that hid the pain I was going through. All of that started in May 2006, and ended in August 2008. Ive never been the same person since, because the pain hurts but instead of putting on the mask, and hiding the pain I wanted to wear it on my sleeve, share my heartbreak, and save someone else the pain that is self inflicted because enough of the stones and fire came from someone else.

I've took a stand, through all the destruction my life has witnessed, all the friends lost, and the family that has distanced simply because they did not know what to say, or wanted to "move on". I stood with very few during that time because I knew you do not move on or move past when murder sweeps your life, you learn how to live with the scars, you learn how to live with the constant band aid removal, and the unraveling of the bandages that you kept on as protection.

I can guarantee to all of you that someone will come into your life at some point, reopen your heart, help you feel again, allow you to show your tears, and comfort your fears. Just hold true to the faith that there is sunshine behind those storm clouds, and you too will pull through this. Allow time to heal your heart, it is all you have at this moment...

This Network was something I needed to save my life in my time when I had a suitcase in one hand and car keys, and my cellphone in the other. I made one phone call, that saved my life. You know who you are, and I owe you my life. So allow us to comfort you in your time of need. We are real people with real fear, real anger, and have lived through real destruction. This isn't a show you paid for or a professional, we did not have stable shoes then and want to help your shoes hold up somewhat better than ours did when we had to walk the path.

I will leave you with this. Hold on to your dreams, hold on to your heart it is the best leader of all. Detract the judgement and hurtful things projected towards you, move through the fire in your fire suit, walk with your chin up, shoulders back, and grab a shield to block the stones because it is bound to happen, but when you need my hand, reach for it, because I will always be here for you... all of you.. don't be afraid.. I'm here..

Love you very much

Rachel

Mother to Madilyne Wentz - Shaken to death age 10 months.

"How is this helping Kassie...?" A story of sorrow, strength and hope.

2010-09-09T05:05:00.000-07:00

I have to say through out the weeks and months that followed our Kassie’s Girl injury and death my mom was the one who kept me together.

All my life I had always been the caregiver. So when we got the call that Kassie was being rushed via ambulance to the hospital, by her mother. I went into crisis mode. My first thought was find my husband and get him to his daughter. Once we got there my next thought was get these little kids out of here. There were policemen and detectives and SRS workers everywhere. Family was crying and at this point all I knew was she was hurt we were going to be here a while and something was very wrong. So as the step-mom I took the roll of taking care of everyone else.

I don’t think the first 3 days I cried. I was so consumed with shielding myself from the reality of it. I knew I would lose control and not be able to keep being strong for my husband, Kassie’s mom, Kassie and my other children. It finally all hit me late Wednesday night. After the days events I knew it was bad really bad. But still I did not let myself go.

Wednesday started out bad and just got worse. It started with her daddy and I coming in and finding her that morning, after we arrived from caring for the other kids having non stop seizures. I knew it was bad. Then the EEG was just wrong. I had seen them before from family member’s health issues. I knew what it should look like it was not even close. The doctors told us that Wednesday night Thursday, tomorrow morning they would do the life skills test. They explained it but I don’t think we really understood it all at that time how could we. I mean 3 days ago we saw her she was bouncing, happy, smiling, loving us and here we were praying she would simply live.

What the hell was going on?? While I was busy caring for who I could; keeping myself busy my mom was watching me waiting for me to crash. And crash I did hard. Thursday morning after the life skills test, after I watched Kassie, not breathe, not blink, not move. After I watched her O2 levels drop and them put her back on life support and say sorry. We will give her one more chance but it does not look good she is brain dead. I finally could no longer hold it in.

After the life skills test I found my husband who just simply could not be in the room to watch, and comforted him. Once he was in an ok place I excused myself from the group and hurried to the church in the hospital. I cried like I have never cried in my life. I was in this huge church screaming on the floor, I had no dignity in that moment. The priest came out to check on me because the pain in those cries was beyond measure.

Thank God no one else was there to see me like that. By God’s grace my mother, who had quietly been there all week. She was helping me to focus on what was happening at the hospital because she was ensuring my other children were safe. She walked in picked me up off the floor and held me till I stopped screaming and sobbing.

You see my mother knew the pain of losing a child. Her first born, her only boy never left the hospital in his short life. My older brother died just a few short months into life because of health issues. She knew where I was and knew what to do to get me back to sanity.

After I was composed a bit, she whispered in my ear “How is this helping Kassie and the other kids? I know your heart broken but someone has to keep it together for everyone else. Who is going to make it ok for them? You cannot fall apart, everyone is looking at you to make it ok.”

Her words never rang more true. She was right, what about the other children and my husband. I was being selfish, letting myself fall apart, that was always my job to be the caretaker. My innate need to care for others; that would be what would get me through this too. Somehow she just knew exactly what I needed to hear in that moment.

I dusted myself off, dried my eyes and we returned to the family. I was ready to resume my duties as caretaker again. That evening we brought her siblings to say good bye and again my mother’s strength and words helped me to make it through without losing it. Kassie deserved me to give my best right now. The kids deserved me to be strong. I was not going to let them down. I kept repeating her words over and over again in my head to get through watching her siblings with her for the last time. They were telling her good bye that to this day was the hardest thing I have ever had to do.

The next morning the doctors prepared to remove Kassie from life-support. My mother was by my side. I knew how hard this must be for her. Watching me go through this, watching a baby in ICU with the tubes again pass away. It had to be killing her, but she stood tall, held my hand whispering in my ear during the last rights, knowing in a few moments it would just be Kassie’s Daddy, Kassie’s Mom, and me(Kassie’s Ahma) in the room as the doctors removed her from life support.

She kissed my cheek and left with the others. We remained in fear, pain and agony. My husband could not watch her die; he kissed her and ran out in pain. I could not leave until I knew she was no longer with us. After she left us, I knew I had to find her daddy. I could do nothing more for our Kassie girl but she would want me to take care of him. I comforted him still unable to let myself go completely because he needed me to stay strong.

My mother found me and took me away from everyone else because she knew I would not let myself fall apart again. I simply could not. I feared if I let myself go in front of everyone I might never be able to get myself back. She knew what I needed yet again.

Once safely with her I fell apart completely, I wanted to die, to scream. To beat the hell out of the person who did this. How in the world could we go on with out our Kassie girl, our youngest family member, this was not fair. I was so angry!!!

The pain and loss was overwhelming I could barely breathe. But somehow her arms felt safe and I knew in that moment she and I shared a pain she prayed I would never feel. She was heartbroken for me and she was so strong through it all. She prepared me for the next step we had to go home and tell her siblings she was in heaven. It took my breath away, I wanted to crawl in a hole but my mother looked on with that smile and said, “She is with Willie and Grandma now they will take care of her”. She was so calm; it was that calm I feed off of. It was her strength I borrowed when I did not have my own. Her strength helped me to do what needed to be done.

Through the next few months I spent most of my time focusing on the children, my husband and their needs but there was always my mom behind me focusing on me. Her strength is the only thing that got me back on track. Knowing she survived such a huge loss and was here to understand, talk to and hold me when I needed it.

Thanks to my mom we all have made it to a stronger place. We miss our Kassie girl daily and always will. My children have grown, their lives have progressed. That we are not stuck is because my mom stepped in when I needed it the most to shake me out of my pain over and over again. As the years have gone by the strength she gave me in the beginning is something I draw on often. I often find myself repeating what she told me on a bad day.

She is my hero for the gift she given me. Only now truly know how much it had to cost her to give me that peace and direction. Losing a child never leaves you. You simply learn how to live with the pain it leaves behind. That learning to live was the greatest gift she could have ever given me. It allowed me to provide my family with the hope, strength and direction we all so desperately needed after such a huge trauma in ours lives.

I thank God everyday she had the strength to be there with us through that. I don’t know if we would be where we are today without her guidance and support.

All I can say is thank you mom. I love you.

Tonya (Kassie's stepmother, her "Ahma")

Important Announcement ~ Please take action today!

2010-09-07T14:14:00.000-07:00

Dear Families and Supporters;

We are coming to you today with hope for what the future holds for us all.

Our goal for this up coming 2011 vigil was set at $15000. Through all of us working together and working extremely hard, we are only 1/4 of the way to our goal.. I spoke with Disney event planning today, and while they are welcoming us with open arms, the amount we have to have to even think about having the vigil at Disney, providing rooms, meals, plane tickets and park tickets will start at $5000. To even reserve just the meeting place and 10 hotel rooms we have to have $3200.

After much heartbreak as to what we had hoped for for our 5th year, we have to turn down the opportunity as truly we want the funds to fund the families and provide sponsorships for the families. The vigil will be in Florida but not sure where as of yet, however if you can help us meet our goal, please contact us today. It is because of you, the families, and all of our supporters that make this annual vigil even possible. IT is together each year that the funds are raised by purchasing merchandise and our now twice yearly t-shirts that provide the funds for this event.

Just say a little prayer and know we are not giving up, we just don't have enough resources to do so yet to host in the happiest place in the world, but we are not giving up the idea just yet. Keep pushing for this, as those whom have attended all know how life changing and how much emotional support is derived from this event.

Please know the Vigil will be in Florida this year, but the venue is still to be announced. We will announce the location before the New Year as promised.

Thank you for your time and understanding,

Love u all-
Rachel
Thank You,
Rachel

Brand NEW Shaken Baby Syndrome Awareness T-Shirts!

2010-08-31T23:27:00.000-07:00

These t-shirts come in Adult Sizes. The pictures are of the front and back proofs we have submitted for printing. When ordering t-shirts please note, these are ordered in quantities of 25-50. Please allow atleast 14 business days from the time you order for printing, and an additional 5 business days for shipment. These are shipped First Class by USPS, and if ordering from overseas, please contact Rachel: rachel@sbssupportnetwork.com for information on pricing for shipment overseas.

Don't have a paypal account?
Thats OK! You can continue through your purchase and purchase using a credit/debit card just click pay with paypal then click continue on the next screen on the left side to pay without a paypal account

Price Break : There will be a price break for t-shirts purchased in quantities of 25 or more. contact Rachel as well for price break information.

The children names displayed on the t-shirts for the fall season are as follows.
These names were submitted with your permission to be added, and are not chosen, as names are taken until the space is filled.

Olvia Kangas

Jacob Whittemore

Gavin Scott Bailess

MeKenna Sharee Brown

Cynthia Gibbs

Tyler Wade Gruhler

Zachariah Goodwin

Emily Rose

Michael Blair

Scott Craig III

Juliana Thaxton

Evalee Jonsen

Duncan Nathaniel Youngblood

Loyce Darlene-Marie Decker

Bryan Parker

Kyle Mitchell

Aaron Cherry

D'Mitri Young

Alexis Vazquez

Joshual Andrew "Tre" Arnold

Alex "Braveheart" Batista

Thomas Chase Sullivan

Camryn Jakeb Wilson

Riley Grace Gilbert

Bradyn Springton

Kassica Ashley Harp

Trevor Anderson-Drews

Nicholos Richard Simpson

Jasmine Christine Coombs

James Michael Nolan Hutchinson

Zephyrus Atiyyah Llud McCartney

Anthony Ceiling

Nicolette Jo Klinker

Preston Garret

Dylan Taylor Haynes

Seraphina Bernardi

Lorelei Leigh Castello

Lily Grace Spataro

Miranda Joy Raymond

Meagen Hope Arnold

Joesp "Billy" Williams

Joshua C. Stewart-True

Hunter Burry

Sophia Salamone

Dustin Crockett

Colby Thompson

Bryce McCormick

Kaleb Schwade

Brynden Tyler Gibson

Dominic Jason DeWitt

Daniella Westlin

Austin Thelen

Austin Childress

Cheyanne Addison Huffines

Madilyne Christine Wentz

Isabella Tatianna Servin

Tyler Edward Arnold

Alan Brady Hines

Blake Murphy

Eli Hegwood

As always, you can also send in your order by Money Order only to:

Shaken Baby Syndrome Support Network

P.O. Box 21693

Little Rock, AR 72221

All sales from the t-shirts will go towards our $15,000 goal for to fund 100 families at the 2011 5th Annual Shaken Baby Syndrome Candlelight Vigil in Florida April 2011. Please be sure to donate today and help us meet our goal to help those lost in destruction due to Shaken Baby Syndrome.

If you have any questions or concerns you can always email us at contactus@sbssupportnetwork.com or call us today for support or concerns at 501.246.2917

Thank you to all the families whom gave permission, and to all of our supporters for their continued support of our efforts!

CLICK HERE TO PURCHASE

~Miss Lillyanna Renee~

2010-08-17T14:18:00.000-07:00

Lillyanna Renee Stevens was born on April 21st 2006! She was a healthy baby with no complications! She lit up my world for the 7 short weeks that I had her before the abuse took place. I being the sole provider for our family had to go back to work 5 weeks after my little angel was born and I left her in the care of her father while I went to work! Never would I have ever suspected he would hurt our little baby girl.When Lillyanna was 7 weeks old we learned that her father had been abusing her. I took her in for an exam because of a large bruise on the left side of her face. My daughter was hospitalized for a few days and we learned that she had two skull fractures and a neck fracture and had suffered from hematomas on the left front of her brain and also on the back by the base of her neck! My daughter was then placed into state foster care and had to remain there for 3 years. Her father got sent to prison but only for 3 years and now Lillyanna has gotten to come home to me. She has seizures and severe anxiety due to abuse and sleep apnia due to abuse the doctors say! We are constantly going back and forth to Portland for testing and doctors apointments. And have been to the hospital a few times but she is such a trooper. She is a beautiful little girl that inspires me everyday because I can look at her and know that whatever problem I am having hers are always worse and she tackles them with a smile. You are a trooper baby girl and my miracle baby!!! I love you with all my heart!

-Written by her mother Katrina

5th Annual Shaken Baby Syndrome Candlelight Vigil

2010-08-12T22:18:00.001-07:00

As you can see above we have received the MUCH awaited information regarding the partnering with Disney World for the 5th Annual Shaken Baby Syndrome Candlelight Vigil. Very exciting news for us, as originally thought it would be at Universal Studios but are truly working towards an experience for our victim families and our families with survivors of Shaken Baby Syndrome.

Why the vigil?
The mission of the Annual Candlelight Vigil is to bring together families with shared circumstances and raise awareness about Shaken Baby Syndrome. During the vigil, the Candlelight volunteers hope to provide a broad range of information and assistance to families of those affected by Shaken Baby Syndrome. The vigil provides a unique opportunity for families of SBS victims and survivors to come together and share their experience and their knowledge. Information regarding medical treatment and therapy assistance, as well as information on how to handle grief will be available to all who attend. The Candlelight Vigil also works to establish a support system for families of SBS victims and survivors. By linking families together who have shared this traumatic experience, we can help each other to learn, to grow, and to prevent this from happening to other innocent children.

How can you help?

We are reaching out to all of our families to help us make the 5th year the best year! Some of our guest speakers include: Darryl Gibbs (father to Cynthia Gibbs), Scott Juceam (father to Hannah Rose Juceam) and many MANY more! To celebrate the 5th year, we have chosen such an amazing location to bring the families together to celebrate the the lives of our survivors, and to honor our victims.

On our website (Click Here) you will find an array of ways to contribute. You can purchase merchandise, some of which can be personalized with your child's name on it, contribute using the chip in widget on our donate page, or get in contact with our Event Coordinator "Mama Kim" at kim@sbssupportnetwork.com to see how you can host a fundraiser to assist. This is definitley something we can not make happen alone. Our goal is to provide funding for 100 families to attend this year.

What happens if our funds raised do not meet the cost to host it at Disney?

There will be another venue chosen. Truly we hope you will work with us to meet our goals and make dreams come true.

As always I would like to thank all of our families and supporters for coming to us for support in the most delicate time of their lives, and for the supporters who stand by us and help us raise awareness that this 100% preventable tragedy does not discriminate, and YOU have the POWER to change the current statistics.

Please find it in your heart to donate. No donation is too small. You can even donate just $1 and vote for a child to be on our race car and have a race sponsored in their name.

All donations are accepted via paypal, using the donation widget below. Don't have a paypal account, but have a credit or debit card? Use the Chip In Widget on our donate page, and once you click "Chip In" on the left side click continue using with a credit or debit card instead of signing into paypal. Even better news! Don't like to put your information in online? Send in your donation today made out to: Shaken Baby Syndrome Support Network to PO BOX 21693 Little Rock AR 72221.

Below you will find our sponsorship packages. Sponsorship packages (**Excluding the Bronze Package) include your business or childs name on ALL marketing materials, including but not limited to banners, tshirts, brochures, website, and all of our educational materials.

Thank you again for your outpouring support and love for the organization and the families associated. Together we are ALL making a BIG difference.

Thank you,
Rachel
rachel@sbssupportnetwork.com

Find us on:
FACEBOOK
TWITTER
OUR WEBSITE

Little Miss Evalee Diane

2010-08-11T10:04:00.000-07:00

My husband deployed with the Air Force to Afghanistan October 1st of 2009. I was a full time Occupational Therapy student and due with our 3rd child in November. I gave birth to Evalee Diane on November 16, 2009. The base my husband was at was not adequate enough for internet so he stood by me during the birth on my cell phone and saw pictures of her for the first time a month later when the mail finally got to his base. We had her on the wait list to get into the military daycare and a week before I had to be back to school they let me know that they no longer had a spot for her. I had to find a different daycare for her temporarily until we could get her in on base where our 2 year old and 4 year old went to school. I found another military wife who lived 2 minutes from our house and had a daycare in her home. She seemed great, and had worked in the daycare business for a while. She even had a baby herself. Evalee was 2 months old when she started there. There were no indications or warning signs that this was not a good place for my child. Then exactly one month to the day after she started daycare in this woman's home I received a number of phone calls. Phone calls from her, her neighbor, and the police that I needed to get to the Emergency Room as soon as possible. That my baby, 3 months old, had been dropped down the stairs and stopped breathing. My world fell apart. I rushed to the hospital and I was not allowed to see my baby for what seemed like eternity. It was an hour or so. She had been taken for CAT scans and had to be intubated. The first time I saw her she was in a medically induced coma, on a ventilator, and had tubes everywhere. Also as soon as I arrived at the hospital I was greeted by a detective. I couldn't call my husband to tell him the horrible news because he was out fighting for our freedom. I was devastated. My worst fear had come true. How do you tell your husband that his daughter he hasn't even met yet is in a coma? It wasn't until the next day when the opthamologist came in and told us that it was shaken baby syndrome and that her brain injury was an intentional act that I just fell apart. I was also informed that Evalee had stopped breathing for a significant amount of time and the babysitter did not perform CPR. How could I have put my child in someone's care that would hurt her?! At this point the red cross was working diligently to expedite my husband back from war to see his daughter for the first time. During this time she had to be transported to Children's Hospital because she would not wake up from the coma. She started having seizures and had to be heavily medicated to stop them. The babysitter was finally arrested for felony child abuse and first degree assault 2 days later. She still denies shaking her and is sticking to her story of falling down the stairs while holding her. My husband finally arrived 4 days after she was shaken. He had no idea what had happened and I had to pick him up from the airport and break the news to him that she had been shaken and was in the PICU with a traumatic brain injury. That was horrible. So my husband went from living in the desert in a tent to living in a hospital for the next 6 weeks. After a couple weeks she was transferred to a Rehabilitation hospital for therapy and she finally started eating on her own and making progress toward recovery. It has now been 4 months since she was shaken and she is doing great. She still goes to therapy twice a week and we are so grateful to have her alive! We still have a long road ahead of us and not knowing the extent of her injuries. We also have a long legal battle ahead of us as well. Please keep this story in mind and NEVER EVER SHAKE A BABY!

One Survivors Request Sent to Dr. Phil~ Blog from his Mother

2010-08-03T15:22:00.000-07:00

Hi Rachel:

I'm so thrilled that 10 years after my baby was shaken, to once again find
the strength and courage to continue my outreach and fight for justice, and
happy to have found your site!

I have written to Dr. Phil - and I HOPE and PRAY I get the chance to be on
his show and go public to millions. I'd like to share with you my letter,
and perhaps I share my story on your site. It's a long letter, but....as
we all know, it's a LONG journey.

I have copied this email to my personal email address, if you don't mind
replying to all, so I can be sure to get your response both at work on at
home.

(See attached file: Dear Dr Phil v9.doc)

(See attached file: Brain Surgery.jpg) (See attached file: Agent Headshot
Sheet.pdf)

God Bless YOU and the awesome work you do!!!!
~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~
CATHERINE PAOUR

Dear Dr. Phil,

My son and I need your help. I’ve thought about writing you so many times. I have never missed a show since day one, and I have learned so much about dealing with my life through your teachings. I’ve watched shows and thought, “God, I should be on that show” such as wrongfully accused, how the system failed, DCFS, PTSD, trust issues, schools systems, the child advocate -- the list goes on and on. I might add that I just adore Robin. I read her book Inside My Heart and it just strengthened my 10-year desire to share my story and further define my purpose as Trevor’s mother and his best advocate.

My son Trevor is turning 11 years old the end of the month. He is a very charismatic, vivacious, fun-loving, spirited “tween”. He’s quite social, he considers himself “half and half popular” at school, good looking and athletic. He leads a life full of abundance: family, friends, prayer, vacations, home life, “things”, pets, church, outings, talent -- you name it. He excels in so many things. He has a real gift for drawing and a passion for acting (hoping to be on TV and has a talent manager and agent). He’s been in cub scouts, YMCA, is learning Taekwondo, loves pop music from young stars and I afford him many opportunities. Trevor is a funny, happy-go-lucky joy in the lives of many that he has touched. He’s compassionate and a real sweetheart. Here’s the problem:

Trevor was a victim of SHAKEN BABY SYNDROME at the age of 4 months. The past few years, as he continues to develop and mature, issues continue to emerge. At this age, he is now able articulate how he feels as well as how he feels others treat him. He has suffered from severe chronic cluster migraines, abdominal cluster migraines (I had never heard of those), and jaw, mouth and neck pain. He’s had muscle spasms, tingling and numbness. He suffers from depression, anxiety, stress, fear, anger, rage, mood swings and obesity. He has had insomnia and racing thoughts. He is hyper-sensitive to people or things that annoy him and can become very emotional. One little thing can cause him to immediately sink real low. His feelings get hurt very easily. He sometimes has low self-esteem, other times has a great opinion of himself. He gets very depressed when he’s physically or emotionally hurting, yet sometimes can tough it out in good spirits. He has in the past, talked to a doctor about hurting himself. He’s complained of “out of body” experiences since 2nd grade. He’s expressed feeling like someone else sometimes controls his mind. He complained for several years about a feeling of a blackout – when he momentarily doesn’t know what happened. He would overheat and feel weak, or be freezing and trembling. He has vision issues from the retinal hemorrhaging. He has huge trust issues with people in authority (I don’t blame him). He’s figured out that someone almost killed him, and he doesn’t trust anyone but me (which is hard on me). It hurts to sometimes see him be disrespectful and defiant to those he should be respecting. He’s questioned his self worth. He’s not violent, and is always remorseful when his behavior crosses a line. He cries and says he doesn’t want to be that way, but says he can’t help it and doesn’t know why. Each step along his journey, he learns more about his injuries and what happened, and the more it pisses him off and he wants to hurt the person who hurt him. Or anyone else who pisses him off. To add more to his “slate of who he is”, he’s had to deal with numerous life changes, but I’ve done a fabulous job with him, and I’m dang proud of it. I know him better than the back of my hand. He is high maintenance, but the one thing that holds him together and keeps him going is my love for him and my perseverance to never ever give up on him. And I will protect and defend him till the day I die. And he knows that. The good news is, he’s maturing, and doing a lot better emotionally this past year, thank God.

I have been very proactive and persistent in seeking answers, help and relief for Trevor especially over the last few years as he’s been in elementary school. I have consulted with an army of doctors, who in my opinion only scratch the surface without looking outside the box, medicate him and send him on his way. He missed 30 days of school last year with debilitating symptoms, and the school put us all through hell. I’m strong for him, yet exhausted and desperate for some relief. Sometimes, all I want is to justify his being alive and hope people will be more compassionate to his sensitivities. My perception is that people seem to not believe that he is in pain, whether emotionally or physically, and he and I have been accused of lying. That’s eating away at both of us.

My main reason for writing is for my son. I’m desperate to get him the attention he needs to really connect the dots and get some answers before he enters his teen years. My hope is that Dr. Phil can make me feel assured that I’m doing the right thing in the best interest of my son, or tell me if I’m not. I pray every day for some revelation or new resources to help Trevor. I need to understand more about his brain, and he’s ready to learn more too. Are his injuries at 4 months affecting his life now, or is everything Trevor experiences a fabricated story or psychosomatic (as some people think)? I would love to meet Dr. Lawless and the Neuroplasticity Center. And if I ever make it to Texas, to pay a visit to the Shaken Baby Alliance, who was there for me during those first few weeks of him being shaken when our lives took a traumatic and dramatic turn for the worse.

My second reason in asking for your help is for me. I suffer everyday with PTSD. I was falsely accused for inflicting this abuse on Trevor, and the system FAILED me. Details on that is further down in this letter. It’s hard for me to deal with school harassment and bureaucracy, and even still living in my same house just blocks from the daycare provider’s home. I’m triggered just seeing an ambulance during rush hour traffic, or a 4-month-old baby. Although I am usually an open book, I’ve been stuffing my feelings for 10 years now, and I can’t do it anymore. People commend me for being strong, happy and a great mom to Trevor. But someone touches a sensitive subject and I’m defensive, and weakened to tears. I’m sick of always feeling like I have to justify Trevor’s or my actions. I had to overcome the ultimate unthinkable blow to my motherhood, and I’m not going to let policy, bureaucracy or insensitive people take me down again. I’m always seeking ways to continue to lead a full and productive life, and be the best influence on my son as I can possibly be. I continually face walls of adversity, both his and mine, and perceived judgment from others on how I handle things with Trevor. But the bottom line is this: I don’t know what really happened to Trevor on December 2, 1999 when he was abused, since the daycare and her family didn’t have to say a word in court. I don’t know what ever happened to the daycare provider, if anything, and I honestly don’t even know that she’s the one who did it -- it could have been her husband or anyone else in that home. All I do know, is it happened while in her care; and Community Care Licensing did nothing. I know that the State put me through pure hell, and what’s going on with Trevor today is REAL. I’m seriously troubled with the thought that the daycare provider who did this to Trevor is still out there, free and clear. They were able to walk away and move on with their lives with no questions asked. We recently found the daycare provider on Facebook with a Masters in Education, and her husband a Sacramento Police Officer. Undoubtedly, both are still working with children. WHAT is wrong with our system??????

Hopefully, continuing to share my story we can uncover some answers to this mystery and save the life of an innocent child in doing so.

I know this is a long letter. I can’t help it. You can stop here, but I hope you’ll have time to read on to see how this story began.
=============================================================

Go back 10 years. I returned to work after staying home with Trevor for 3 months. I worked for 19 years in Public Relations/Foundation for a local medical center. I dropped Trevor off at the licensed daycare provider’s home at 7:30 am, and spent the day working a holiday hospital fundraiser, which included escorting children through a festival of trees and visit with Santa Claus (who happened to be the daycare provider’s grandfather). When I got off work, I went to go pick Trevor up around 4:45 pm. As I approached the daycare provider’s home, I noticed an ambulance out front, which only caused some concern, since the daycare provider’s husband was an ambulance driver. As I quickly approached the porch, I heard, “There she is now.” I arrived to find my son unconscious. The paramedics put him on my lap, onto the gurney and flew out the door back to the hospital where I work after signing a release in case Trevor were to pass before arriving at the hospital. It was the worst ride of my life, and I had no idea at that time it would be a life sentence from that day forward. With a life-threatening situation on the ER’s hands, and thanks to a quick CT scan identifying the hemorrhaging, they quickly transported him to a children’s hospital, better equipped to handle pediatric trauma. My hospital co-workers comforted me while I couldn’t help but fear the worst.

About 4 hours later, it was determined that Trevor suffered severe brain hemorrhaging and retinal hemorrhaging. He had seizures and gaze paralysis. His outlook seemed grim. Doctors were aloof. His father and I had no clue what was wrong with Trevor or what was going on. He was in PICU for 10 days, while eventually we learned that his diagnosis was Shaken Baby Syndrome, or “non accidental trauma”. Or in terms that most people understand: CHILD ABUSE.

It makes sense that it happened while in her care. I dropped Trevor off around 7:30 am, and picked him up at 4:45. BUT, 4 days later, Children Services quickly detained him, and charged me and my husband with child abuse. We could no longer see him in the hospital, didn’t know if he would survive, and couldn’t even be with him when our pastor came to pray for him. While we wanted to do everything we could to get to the truth and find out what happened, we were advised to have no contact with the daycare provider, and our focus had to be on defending ourselves at this point, and I’m talking immediately. After 10 days, he was released from the hospital, and I worked my tail off to get my parents guardianship over my baby, rather than going to a foster home. We went 4 months without my child in my home, with only supervised visitations. Meanwhile, the State of California slammed us with count after count, up to and including permanent removal of parental rights – twice! As court proceedings continued on for 4 months, we also had to try to keep our jobs and highly visible positions in the community, without being a PR risk. We had tons of support, but some people did have strange reactions, which I guess is normal for someone accused of such a hideous crime. We struggled to keep our marriage together while Trevor lived with my parents, come up with finances for extensive legal and medical bills, and endure Trevor 1st Christmas – with out him. As the New Year 2000 came, he still wasn’t home, and they put him on MediCal, and wouldn’t even let me be with him for his brain surgery.

The agony continued as DCS demanded we take parenting classes, an anger management program, and presented us with some despicable “offer”, or in our case, what seemed like blackmail. They even conducted an adoption assessment on him - ready to throw him right into the system. This was right on the heels of President Clinton signing a bill to fund quicker adoptions. Their attempt to rip my baby right out of our loving arms was beyond anyone’s wildest imagination. No one could understand. Not even the Doctors, nursing staff, hospital social worker, therapists, and in some cases, DCFS own case workers. The whole situation spiraled so far out of control and all we were ever told by DCFS was “were just following protocol”. We went through countless case workers, and not one single one believed we had anything to do with injuring Trevor. This all came out in the trial as well.

Everyone would ask: “What happened to HER” – the daycare provider? Well, she took the 5th amendment in the trial against us. And then she and her family were long gone. Up and moved. They rented their house in our neighborhood – and now they were gone.

We somehow managed, through the grace of God and a ton of legal fees and medical bills, to prevail, and we got our baby back. The judge in our trial heard not one shred of evidence that would lead anyone to believe we were responsible for his injuries. We never even had to present our side, we only went on the stand for the prosecution. After the state presented their side, the case was dismissed. The judge declared the trial over after 4 months of hearing about the daycare provider’s deception, and after the medical testimony of the treating Neurologist, and my pediatrician who testified that the “mother walks on water”. Anyone in their right mind would look at and say “we have to go after that woman; we have to know what happened to this baby. And we have to make sure she is never around anyone else’s children again.” Nope. Not one darn thing was done to her that I know of anyway. But our focus had to be on our family, and reestablishing a bond with Trevor, who missed out on critical attachment to his mother for those first 4 months.

Thankfully, Trevor wasn’t blind, as we were told he might be, but later learned he was considered legally blind his right eye. He had no broken bones, and no one really paid much attention to his neck. His seizures were managed, and the shunt in his brain help resolved the internal bleeding. He had no visible evidence of his injuries except a shaved head from his brain surgery and residual effects of his brain damage. He was living with my parents, and progressing well. Unlike my marriage!

A year or so later, we tried to file a civil suit against her. Couldn’t do it. We reached out to several legislators, and finally authored a law, Senate Bill 819, (2001). This law was not in place for us, so we were basically SOL in taking any action against her.
My husband and I were invited to speak at the International Child Abuse Conference – not about our baby, or shaken baby, but on the topic of “WHAT WENT WRONG”.
(I have it on video tape.) My attorney then became advocates for finding out what happens to us now that all charges have been completely dropped, but we still appear on the National Child Abuse Index. As far as I know, I’m still on it today. I began sharing my story with local Kiwanis, Rotary, Jaycees, and everyone that would listen. This was a real-life story that took place in our neighborhood, not something you only see in a Lifetime TV Movie (although I’d like to write one!). My husband was a little more private so I tried to move on with our lives. And my child was my number one priority.

Another year later, Trevor’s father, with no notice or warning, left the marriage and our home. I have been raising Trevor alone ever since. I made certain our divorce was amicable, (even though I didn’t want to, the way he left) and Trevor continued to see his father. Don’t get me wrong, his father had NOTHING to do with this. The evidence presented in our trial so clearly points to the daycare provider.

So here we are today. Trevor suffers a little more and more as he continues to develop and his body grows. I sense that the countless number of medical professionals that Trevor has seen in recent years just can’t see beyond their specialty, or make sense of what’s really going on with Trevor. We go from one to the next with no coordinated effort at all, except my endless quest for someone to look at the whole person.

Call it mother’s instinct. I know my son so well. There is something going on with him, outside of sometimes lacking coping skills, being raised in a single-parent home, having severe headaches, or being labeled with a “mood disorder”. There have also been accusations, especially in the past few years, of him making up his illnesses to manipulate me, me babying him, and him getting away not going to school. I have worked hard and I think have bridged all those gaps, and continue to have an army of support. I have a 504 plan in place for school, I have an attorney and personal advisor to help me deal with the school and their insane systems and approach to dealing with Trevor’s ails and medical absences. I’ve been in therapy to help me deal with the PTSD. I have family support, however some don’t live it like me and my parents do. I had to eventually leave the hospital after 19 years, which ended in the oddest of circumstances, but I currently have an awesome job, with tremendous support, and I am working to pursue my goal of sooner rather than later moving out of my neighborhood and starting to make new refreshing memories for me and my son, closer to my parents, his school and friends. While I feel ever so blessed to own my home, it’s a house with some pretty awful memories, some “defining moments” and it’s too close to “her” house. Both Trevor and I feel the need to move on.

I was pretty organized during all these years – and am the document queen. I have every letter, report, film, transcript, record of conversations, above and beyond, which proved in my case to serve me well. Your producers would love this one. I hope that someday, I can get the chance to tell my story to all the moms out there: what’s possible in your own backyard, how the system failed me and my child. And once again stand up for the rights of a child, who now is old enough to have a voice. I sure wish he did back then. And maybe we can save another child from the perpetrator. And who knows, maybe Trevor’s dream to be on TV will come true after all!

Regards, and from deep “inside my heart”,

Catherine

Remembering Ricky Poore Jr.

2010-07-30T14:10:00.000-07:00

Thomas "Chase" Sullivan SBS Survivor

2010-07-28T13:07:00.000-07:00

Two months after my beautiful twin boys were born...one of my sons was shaken by a family member. I was told he would be a vegetable for life, he would never talk or walk & he would stay in the curled up fetal position for life. I was completely devastated the day I was told this. I was in shock...showing no emotion and the doctors continue to ask me if I heard what they said! I then said, "Yes, I understand." As I walked out of the hospital, I took my 6mn old twin boys & placed them in their car seats. As I closed the car door it hit me like a load of bricks! The sky laterally turned black...it began to rain with a vengeance...and I looked up to Heaven screaming and crying, "Why God, why"! Almost 11 years later I still deal with the pain and anger daily. The court system failed us and the perpetrator never served a day in jail.

My son Chase has brought us so much joy and taught us what true unconditional love is. Chase has over come obstacles his doctors said he would never do. He is not on a feeding tube, he is barley drooling now, he is walking with AFO leg braces and he does have a range of communication skills. We have come so far in our journey and we still have more to accomplish. I take each day by day with the courage I get from both my children.
There are two ways to live your life...One as though nothing is a miracle...The other as though everything is a miracle. At first glance my son now seems to not have any impairments but, soon you do come to realize his special needs. Chase is 300% better than the doctors said he would ever be. This is by the grace of God & years of therapy. We still have a long way to go, but each day just proves to me what I should really be thankful for! I was very blessed with having twins. My other son (big brother by 1 minuet) takes his role very seriously. He is a loving caregiver even at his young age. I know God gave me Twin Angels so they can take care of each other when I’m gone. Even though we may not understand the paths we must take in life God does. He knows what we need to go through & he knows who to put there to help us get over the obstacles. Be sure to stop and think about what you and your family really needs to live a productive and happy life. Never complain about being busing taking your kids to events because you never know when it all could be taken from you. Live for every moment and love every second God gives you with your children. Protect, Nurture, Love & Teach all children with their abilities & disabilities.

Thank you,
Christine Kunclrs

~Seraphina's Story~

2010-07-15T16:40:00.000-07:00

I am 21 yrs old and a mother of 2. My oldest will be 2 August 24. My youngest will be 1 August 11. My oldest name is Seraphina. She is blind and disabled due to child abuse. My little angel was 6 months old when she was beaten for the last time. She was living with her father and his girlfriend while we were undergoing a custody battle. I knew there was abuse going on in the home and I contacted the police and Department of Child services and they did nothing. I was even prepared to kidnap her but they never let her out of the home where I could get to her. After she was taken the from them the last time we heard about the abuse she endured. She wasn't allowed to eat when she was hungry if she didnt eat fast. She wasn't allowed to sleep unless on their schedule. She was spanked, slapped and, put in time out beginning at 1 month old. She even had her hands safety pinned behind her back so she wouldn't get out of a swaddle at night. Once there was a police report made when they took her to the ER because she was pooping blood. The Drs noticed that Sera had handprint bruises on her stomach. She was squeezed so hard that it cause bruises. Even after that and another incident of a black eye she was not taken from the home. The last time she was abused was on February 18, 2009. Her father's girlfriend, Alicia, was home alone with Sera and her own daughter who was a newborn. She had gotten angry with Sera becuase she was whiney and took her into her room and holding her around her waist, swung her back and forth beating her head against her own crib. She did this several times and than threw her into her crib so hard she hit her head yet again off the other side. Sera went into shock and started choking yet Alicia just turned up the music in the room and left shutting the door behind her. She told police later that she thought she killed her. By the time her father got home Alicia had went in to the room and picked up Sera and was holding her as she siezed and choked in her arms. Alicia claimed she couldn't find the phone, but her father was able to find the phone right away. He called 911 and an abulance came and picked her up. The parametic on the ambluance did a quick assesment on her and said that on a scale from 3-15 Sera was an 8. She was not responding to anything but more pain and even then all she could do was wimper. Once they got her on the way to the hospital they needed to get her on some pain medication. Because Sera was so stiff they had to take a corkscrew like tool and put an IV into her bone marrow. Finally they were able to get her on morphine and she started to relax.
Meanwhile, I was pregnant with my second child. I was not feeling well. Not having a clue what was happening to my baby, I went to the ER to make sure everything was OK with the way I was feeling. When I got there and was getting ready to be checked in, my daughter had arrived. The Dr came to me and asked me if I brought a baby with me. I told him no and realized they were talking about my daughter. They escorted me and my fiance to a family waiting room and told us that my daughter had been dropped when being put into her crib (that was Alicia's story at the time). After a few tests the Drs knew that the damage done to my daughter was not an accident. That is when the interogations started. They told me I was not allowed to see my daughter. They also gave me the worst news a mother could hear. They told me that the damage done to my baby was to severe and that she would't make it through the night. She was still seizing, had a skull fracture, a bleed in her brain, detacted retinas, a clot in her brain, along with bruises all over her. I could do nothing but sob as my heart broke. The only thing that kept me going was the child that was growing inside me. They sent me home after what seemed like an eternity of trying to calm me down. That night was so tramatizing I dont remember much of it. The next day I called the hospital and my baby was still alive. I was finally oked to see her and stay with her that afternoon. The first time I saw her my heart broke all over again. She was laying in the white barred crib that looked like a miniture prison cell. She had wires connected every where on her little body. Gauze covered her head to keep the electrodes on her head and a splint on her arm to keep her from knocking out IV's. She laid there lifelss. If it wasn't for the machines saying she was alive I wouldn't have believed them. She looked like she was terrified to move.
The next few days she was back and forth from the ped's unit to the Intensive care unit. Her siezures would come and go. She was put on several meds to keep her from seizing. They had to keep her tired so she wouldn't get worked up. After the 10th day. I decided to go home that night to get some rest so I wouldn't hurt the child I was carrying. The next day I came up to the hospital to see Sera and we were informed that she was placed in a foster home. I was devestated. We went to the DFS office to try and fight to get her back, but all they could tell me is that they "suggested I sign my rights over because I couldn't handle all the challages of raising a child as special as Sera". She was never going to walk or stand or see. They told me that she was going to be in diapers for the rest of her life and would never speak. Even hearing all that I knew I had to get my daughter back. After 5 months of jumping through hoop after hoop and going to visits and classes. I finally "earned" the right to have my daughter back.
Ever since, we have been working with her constently to make sure that she lives to the best of her abilities. She is in Physical Therapy, Oral/Speech Therapy, Disabilty Services, and School for the Deaf and Blind. With all the services she is in, she has learned to stand on her own. She is starting to walk. Is learning sign language, and says a few words. She is on seizure medication. And is learning how to use her other senses to make up for the loss of her vision. We have come a long way. But as we are going on we have more trials that keep coming up. We have just recently found out that there still is a chance of brain deteoriation and that her life span has all ready been shortened. We are now in the process of finding a Dr who is willing to help us find the aswers we need to help her.
Also because of the stress I endured during the tramatic event my daughter underwent, my youngest little girl, Emilie, is also having problems. She was born 5 weeks early and we have had many tests done on her. She has calcium deposits in her brain, she favors one side more that the other, (although not as much anymore), she had tortiulis in her neck which cause a misshappen head, and she was very slow to reach her milestones. We are also having those things looked into by a Dr in Seattle.
We just ended our trial against Alcia Hocter for all the pain she has caused our family. She was found guilty of Aggravated Asault and Criminal Endangermant. Finally after 1 yr and 4 mo she will be sentenced on July 14, 2010. In that period of time she has been out of jail she has had another child and gotten engaged to a registered sex offender. She is looking at a sentence of 30 yrs at the most. In order to ensure she gets the full sentence I need to collect letters stating to the judge that this shouldn't be tolerated and asking that he shows her no mercy as she has shown none so sweet Seraphina. If you are interested in writing one please let me know.
Even with all of this we still manage to find happiness in every little thing my girls accomplish. Sera's father has signed over his rights to her and Will, my fiance, will adopt her right after we are married on July 24, 2010. At that point we will finally be a family. We will be faced with struggles every day and new trials will always arise, but someone was watching over my little girl that day as well as my youngest the day she was born. They are meant to be here and will achieve what they are meant to. God(or whomever is up there) has only taken from my babies what they don't need to fufill there reason they are on this earth. I have confidence that they are being closly watched and protected in there life here.
If you are intersted in keeping up with my daughter's story you can join our page and fight against child abuse. Seraphina's page is on facebook~

*Update* To read about the justice served please CLICK HERE*

Written by Kendra, Seraphina's Mother

Joseph "Billy" Williams

2010-06-20T20:58:00.000-07:00

Joseph "Billy" Williams, was born August 5, 2001 into what seemed to be a loving family with a Mom, Dad and my big sister Annie, All seemed proud to have me in their life. My big sister couldn't wait for Mommy to come home with me and when we came home, My dad couldn't take me out of the car seat fast enough for her to hold me. My life changed just a few short weeks later... Both my Mommy and my Granny suspected something was wrong but I never bruised, I never lost conciseness. There was no tell signs that I was abused, then on Nov. 3rd 2001 my mommy was able to take me in to get looked at only to her surprise they found that I had 4 broken ribs that were almost healed and some brain trauma. This broke my mommy's and my Granny's heart. I still don't understand how my own Dad could have done this to me, he was supposed to protect me not hurt me. My mommy and Granny spent the next several years trying to help me through my physical challenges. I'm now nearly 8 and I'm doing things that the doctors said Id never be able to do. I can run, jump write my name, I can even play on the monkey bars now. My mommy and Granny are SO happy of my progress. My Dad never had any charges pressed against him, which I know upset my family but my Mommy made sure that he could never hurt me again or hurt my big sister. I never want any other family to have go through what my family when through, SO please I beg with you all Never hurt a child!

New Decals!!

2010-06-15T10:46:00.001-07:00

These new decals can be personalized with your child's name! Please ensure when purchasing you send in your child's name for the decal through paypal, or send in through email to Rachel. Once put on the vehicle you will not see the white box, just the letters and ribbon are outlined in white. They are $8.50 per decal, and cheaper if purchased in quantities over 15. To obtain a quote on quantities over 15, please email Rachel directly at rachel@sbssupportnetwork.com. Please click the paypal button below to purchase, or if you are experiencing problems, submit payment through paypal by sending the amount to suesbuffalo@yahoo.com

*Please note, shipping over seas does increase the price, however not by much. If you are overseas and are ordering, please contact Rachel prior to ordering via paypal.

Don't have paypal and want to mail in payment?

Please make check or money order out to : Rachel Sumner
and mail payment to:
Shaken Baby Syndrome Support Network
PO BOX 21693
Little Rock, AR 72221

~Survivor Tyler Wade Gruhler~

2010-06-01T23:45:00.000-07:00

The date was March 15th, 2008. The place, a small apartment in Orlando, FL. A young couple and their 2 children were finally achieving one of their dreams, and had just moved out on their own. Things were looking up for them, and never had the couple been more in love. Waking up in the mornings to an innocent 3 month old boy, Tyler, and his older brother, William, and to the strength of each other's love was an amazing experience. Tristin, the mother, had found a decent paying job working overnights at a local gas station. Robert, the Father, wasn't having much luck in the job department, having left his last job within days of Tyler being born. It was decided that Daddy would watch the boys at night while Mommy worked, then he would go job hunting after Mommy had made breakfast everyday. Things worked out well that way for about 5 weeks.
One night while Tristin was at work, Robert called, clearly frustrated by the baby crying. Tristin offered to come home early, with permission from her manager. Robert refused her, saying they needed her paycheck, and he was fine. Tristin advised him to leave Tyler in the crib and to go outside to smoke a cigarette. William was already asleep, undisturbed by his brother's tears. Robert hung up, seemingly more relaxed. Then he called back, to say goodnight, the baby was asleep. Tristin went about her shift, answering the phone when it rang again at about 5:15 AM. It was Robert again, but Tristin knew the moment she picked up that phone that something was wrong
"Its Tyler, its the baby!" sobbed Robert
"What's wrong?" asked Tristin, thinking maybe he had woken again and that Robert was exhausted.
"He isn't breathing, and he is shaking, twitching. I don't know what's wrong!"
"call 911, now! I'll be right there!"
Tristin's and her co worker jumped on his motorcycle and made it to the apartment in about 3 minutes, where they found Robert holding a very still Tyler in the doorway. Tristin ran and reached for the baby, taking him into her arms and calling his name over and over.
"where is the ambulance?" she cried, panic stricken and horrified at her child unmoving in her arms
"I'll call them now" Robert replied, turning away. Tristin began moving Tyler's arms, calling to him as she did so. Finally, he issued a thin cry, and began twitching in her arms. Tristin sobbed as the ambulance's red lights washed over her. The paramedics rushed in and took charge. "what happened?" one asked her. Tristin looked to Robert. "He fell off of the changing table and hit his head on the tile floor"
Tristin and Tyler were hustled into the ambulance, leaving Robert with William until their friend could arrive.
Once at the hospital, everything was in slow motion, Tristin watching her child struggle to breathe, to cry. She kept thinking "how does a fall do THIS? how did it cause so much damage?"
The answer came a few days later. Tristin went to the hospital to visit her son, who was in an induced coma, and was intercepted by a detective and a protective services agent. They questioned her about her activities on the day of the accident. When they seemed satisfied by her responses, they finally broke the news to her that Tyler was showing all of the symptoms of SBS. Tristin's whole world shattered at that moment. She hadn't hurt Tyler. There was only one other person who could have.
The detective offered her a ride home, and she walked, zombie-like into the apartment, staring at Robert as though seeing him for the first time. "what happened?" he asked, startled at her appearance. Tristin stared at him "They found something, didn't they?" asked Robert, suddenly pale. Tristin stood aside and allowed the detective to enter the room. Robert submitted to questioning, Tristin held his hand, praying it wasn't true, praying it was all a misunderstanding.
It wasn't. Robert confessed to shaking Tyler "rather aggressively" twice and to dropping him onto their bed from about 6 inches high.
Since the detective and protective services couldn't prove that Tristin hadn't known about this, and since her alibi wasn't proven, they removed both children from her custody, as well as Roberts, placing Tyler in medical foster care, and William with his biological Dad, someone William had never even met in his life.
It took 2 weeks for them to arrest Robert, and another week after that Tristin finally got to see her son's again. Since Tyler was in such poor shape, the medical family kept him until Tristin could complete a case plan and comply with DCF's wishes that she take parenting, anger management and counseling. 6 months all together passed before the children were returned to Tristin.
Within the 6 months, Tyler showed significant steps towards recovery, crawling and babbling. He took his first steps weeks before his 1st birthday.
Now, Tyler is 2 and a half. He is a completely normal child, walking, talking, and going through the classic "terrible twos" He is a hero in his family's eyes, proving that nothing is impossible, and to never give up hope, not even for a second. William and Tyler are incredibly close, even thought William is still too young at 5 to understand what happened that night.
As for Robert, he was sentenced to 9 years for his crime, based on the fact that he did take full blame and was sincerely sorry for what he had done. Tristin struggles to this day with her emotions over him, preferring to stay far away from all men in general. The only important males in her life are her heart and soul, William and Tyler Wade.
This family was blessed by coming out the other side still standing, stronger than ever. But Tristin doesn't take any of this for granted, knowing full well the outcome of similar stories, the unbearable heartache and suffering of families everywhere. She is grateful everyday for her miracle baby, her little warrior, her amazing SBS survivor, Tyler Wade Gruhler

We need YOU for 2011! Want to attend the vigil? Here is how!

2010-05-29T22:21:00.000-07:00

There have been many questions submitted regarding this next years 2011 5th Annual Shaken Baby Syndrome Candlelight Vigil which we hope will take place at Universal Studios in Orlando Florida April 2011. In order for this to happen, we have a year to plan the event, and a year to raise the much needed funds to make this happen.

Here are some of the questions that have been submitted answered:

1. The goal is to raise $15,000 dollars, what does it go for exactly?

The goal is set to raise enough funds to provide travel assistance to 100+ families. This travel expense will assist also with the $50 per person needed to enter the facilities at Universal Studios. This is simply the cost to host the event at this location, and provide families a chance of a lifetime to enjoy a day in the parks with those whom know their pain and circumstances. This will enable a chance for the families to gather in one place, and enjoy time together in one of the funnest places in the world. Creating smiles on the faces of those where destruction has taken over is our #1 goal.

2. I want to attend but will need assistance. How do I sign up for assistance?

There is a continuing revolving list that remains each and every year. We will put you in a slot on our list, and as funding becomes available you are offered assistance and the chance to arrange to come, and should you need to decline the next person in line will be offered such assistance. With that said, we have an entire year. Currently we as a network are doing everything in our power to ensure your attendance, however, you have an entire year to save towards your trip, and host fundraisers of your own. We ask that you do everything in your ability to raise the funds before asking for assistance. With our limited amount of funds each year, if you have received funding in previous years we will place your name on our standby list.

3. What can I do to help?

We are currently seeking family members to join our support team to broaden the spectrum of stories and circumstances to support all the new families joining our support network each and everyday. We are also seeking bloggers, and many other positions are coming available, and are volunteer, at your discretion.

4. I can not get the links to work to donate or purchase merchandise!

At anytime, if you are having an issue with any links to donate or purchase, please email Rachel at rachel@sbssupportnetwork.com, or send payment via paypal to suesbuffalo@yahoo.com

5. What is provided if I am funded for the vigil?

Currently as the past years, we provide (1) round trip plane ticket, a place to stay, and food. This is all courteous of Rachel and family, and local organizations including churches. Transportation will be provided for you for the duration of your stay.

These are just a few of the numerous questions we are receiving on a daily basis. You can always contact our team via the emails below, or call our organization hotline at 5012462917. Without you, this event can not take place! Lets make this next year, our 5th year the biggest yet! Pass along the information to everyone you know. If you would like information regarding our organization, and a request support letter to forward along, please use the contact us page on our website at http://www.shakenbabysupport.com or http://www.sbssupportnetwork.com

*Update on 501 (c) 3* The process is long as most know. We will be creating a fundraiser very shortly to raise the $750.00 needed to submit our paperwork to the IRS, however we have obtained our articles of incorporation which is a big step for us!

Thank you!

Rachel

rachel@sbssupportnetwork.com

Contact Our Team:

angela@sbssupportnetwork.com

lisa@sbssupportnetwork.com

mamakim@sbssupportnetwork.com

steffany@sbssupportnetwork.com

tara@sbssupportnetwork.com

The legacy of Kassica Ashley Mary Harp

2010-05-25T13:30:00.000-07:00

Kassica Ashley Mary Harp July 1, 1998 ~ April 21, 2000

I was born Kassica Ashley Mary Harp on July 1, 1998. I had a wonderful, loving family who was very happy to have me in their lives. I loved my Mommy, Daddy, Ahma, my big brothers Kyle and Ethan, and big sister Sammi. I had a lot of other loving family members who took care of me and loved me with all their heart and soul too. I grew from a healthy baby girl into a little princess that was as prissy as a tom-girl could be. I ruled the roost and even though I was a lot younger then my big brothers, I sure bossed them around! LOL!! They loved me so much they let me get away with a lot of that. I loved it when they would play with me and do lots of fun things to make me happy. Mommy, Daddy and Ahma gave me lots of hugs and kisses and spoiled me rotten! Mommy called me Pumpkin and was I everything she had dreamed she'd want in a little girl. Daddy was completely wrapped around my finger and I loved to play with him. Ahma played with me and made me feel very special. Mommy would sing to me and we'd dance around the house, being so very silly with my brothers and we'd laugh and laugh and laugh!

Mommy and Daddy knew this person that they had known for a very long time and trusted very much. This person was someone who was very involved in our family life. Daddy would play sports with him and Mommy would laugh at his funny jokes. This person was someone they both would have never believed that he could hurt anyone, much less me.

But he did.

He did something to me that should never happen to a child. Mommy, Daddy and Ahma will never know what all happened to me but I hurt really, really bad. He had shaken me really, really hard and I hit my head on something that gave me a very big skull fracture.

Mommy, Daddy and Ahma watched me get weaker and weaker in the hospital. I never could wake up to tell them I loved them. I knew Mommy was there and in the beginning could move my hands, arms and legs. When they would touch me and then stop, I would let them know I still wanted them to touch me, to show me they were there. But after awhile I got too tired and I couldn't show them anymore that I wanted their touch and their love.

Mommy, Daddy and Ahma prayed and prayed that I would get better and be able to come home but God told me that I had a very special job to do in heaven. He told me that He would make sure that they knew He loved them even though they were broken hearted. God sent a beautiful angel to take me to heaven.

In heaven I didn't hurt anymore. I wasn't afraid anymore.

I miss my Family but I watch over them and let them know I love them when they miss me, which is a lot. I know that I will get to see them soon. I have a little brother named Wyatt now and I watch over him too. I can't wait until my family gets here so I can show them around and take them to meet God.

I know what my special job is that God wanted me to do. God wants me to help stop other children from being hurt. By letting people know what happened to me maybe I can help stop other children from being hurt or having their life taken away from them too.

I was only 22 months old when I was taken away to heaven.

I didn't get to learn how to swim.

I didn't get to have slumber parties.

I didn't get to go to school and make friends, go to dances, get my first kiss by a boy I liked.

I didn't get to meet my special someone and have my fairytale wedding.

I didn't get to know what it was like to be a Mommy, holding my babies and watching them grow.

Please, please! Help stop these horrible actions against children.

Please help stop child abuse. Please.

~Miranda Joy~

2010-05-23T22:13:00.000-07:00

TIPS FOR PARENTS
- If you find yourself at your breaking point with a screaming baby, put the child in a crib and walk away. "No baby has ever cried themselves to death." The parents needs to take a breath. The child will be okay."

- If your efforts at calming a child prove unsuccessful, do not be embarrassed to ask for help. "Pick up the phone call someone Walk down the block and get a friend involved."

- Be certain to have someone trustworthy watch your child if you can "Make sure they are responsible and can handle a child and informed about what to do if a child is crying" .

MIRANDA JOY'S STORY - WRITEN BY HER MOTHER AFTER LOSING HER

My family tragedy began on October 2nd it was my husband's birthday and I worked all day. My husband and my two daughters walked to my work to walk me home. It was suppose to be a normal day; we were going out to dinner that evening to celebrate my husband's birthday. As we walked home, we were talking; my 17 month old daughter (Emily) was happy as could be, and it looked as if my 4 month daughter (Miranda) was sleeping. For some reason, I felt the need to pick up my 4 month old.

As soon as I did I knew something was terribly wrong. Her body was limp, she was unresponsive, and her breathing was shallow. Of course, like any other mother, I was quite frightened and got home with her as quickly as possible. Fortunately for me, my own mother only lives two houses away. Still not being able to get any response, I whisked her over to my mom's house along with the rest of my family. My mom took one look at her we knew we had to call 911.

So I called 911, and within minutes they were there. They took Miranda in the ambulance to the hospital and I went along, still having no clue what could be wrong with her. When I left her at 7:15 that morning, she was sitting in her swing cooing and happy. We arrived at the hospital and they worked on Miranda. All the time, I was standing there with my husband, crying and trying to understand what could possibly be wrong with my beautiful baby girl. I kept asking my husband if anything happened; was she okay all day? He said she was fine that day and that nothing had happened. I was trying desperately to help the medical field with any questions they may have had to help them discover what was wrong with my once healthy baby girl.

Approximately one hour later, they decided they were going to fly her to Hershey Medical Center. My husband and I raced to meet them there, along with the rest of my family. Hours later, when the doctors came in to talk with the family, I was told my baby was bleeding from the brain. Well I was in disbelief; I was told her chances of pulling through this were very slim. The doctors left for a period of time, and I was waiting to be able to see Miranda. Some time later the doctor's came back to talk with my husband and I. They told us that this looked like a case of Shaken Baby Syndrome. I was in shock, because the only people who ever cared for our children were family members, including ourselves.

I spent the next several hours with Miranda, trying to find some other reason for her injury. The next day, a social worker and police came to talk to me and my husband. They questioned me and my husband together, then talked to each of us separately. Four hours later, my husband confessed to shaking our baby girl.

From that point on, my life took a whole new turn. I spent everyday and almost every hour by Miranda's side, praying for God to work a miracle. On Tuesday, October 5 th, we met with the doctors and were told our daughter's injuries were so severe that she would definitely die. I was told that the part of Miranda's brain that was destroyed controlled her thinking, sense of touch, eyesight, & hearing; everything that would make her quality of life whole was flushed away. And of course, with the brain dying there is no such thing as a replacement. So I was told that we had two choices; we could let her the way she was not knowing how long she would live, breathing only by machines and in a coma state; or we could take her off life support and give her to God. They said she would not make it more than 48 hours off life support, probably less.

So on Wednesday, October 6 th, I made the decision that the best thing for my once healthy, beautiful, baby girl was to take her off the life support and give her to God. So on Wednesday evening, we took her off life support. I was able to hold my baby girl then, and had somewhat of a comfort; if that is possible when you know your child is going to die, and there is not a thing you can do to stop it but put it in God's hands.

Miranda, to everyone's disbelief, lasted off life support for almost 7 days. She died in my arms on Wednesday, October 13 th, 2004 at 8 am. So I am now faced with trying to cope with the loss of Miranda, and my family being ripped apart. My husband, of course, can no longer be with us; nor do I choose to have him with us. He is not allowed to have any physical contact with my other children, and is now living with his parents awaiting charges that will be brought against him pending a thorough investigation. So I am faced with taking care of my family on my own now. I returned to work on Friday, November 12 th, 2004 - one day before the one month mark of Mirandas death (much too early). I had to return to work to be able to support my other children. I have had no help whatsoever from his family, financial or otherwise. They have not even tried to call or drop a note to see how their other granddaughter is doing. I will never understand the judicial system. It is unbelievable to me that someone can confess to a crime as heinous as killing their own child, and walk free for 5 months before charges are brought against them.

My husband has since been arrested for the death of Miranda. He was arrested on March 2 nd, 2005 exactly 5 months from the day Miranda's life was snipped away from her.

I have had almost nine months before writing this part of the story. I have now, through God and the great support of my family, been able to go on with life the best I can. Yes, I have good days and bad days, but just months ago I thought I would never have even a half good day. I still miss Miranda so much everyday. My whole family has been torn inside in some way or another by this. It is as if they have lost a child too. After all, Miranda was a daughter, grandchild, a niece, a sister, and most of all she was a precious child who was not given a choice as to how her life was so suddenly shortened. The only peace I have is knowing that she is an angel now with God, and I know she knows how much her mother loves her and will never stop loving her or remembering her.

So now, almost 9 months later, with my brother's strong will to get this foundation off the ground, we are starting the Miranda Joy Foundation to enable us to help with and educate about domestic violence and Shaken Baby Syndrome; to keep Miranda's name alive and to bring some sort of sanity to what has happened in our lives.

I want to thank you for visiting our website, and if you choose to help support us in our efforts, I thank you for that from the bottom of my heart. No family should have to go through the death of a child and especially the deliberate death of a child. May peace and prayers be with you.

Thank you,
Amy Raymond

SUPPORT MIRANDA JOY FOUNDATION.
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Mother's Day

2010-05-07T12:17:00.000-07:00

Mommy’s Day
Last week, I attended one of the mandated trainings required to keep Riley’s Medicaid waiver active. I chose the “Stress Management for Parents of Children with Special Needs” workshop, for obvious reasons. I frequently blog about all of the hoops that I, as the parent of an SBS survivor, go through to get my daughter everything that she deserves to work on her recovery. Although I dreaded attending the workshop (it was just another thing I HAD to do and try to fit into my hectic schedule), I have to admit that I gained a lot from the experience, and find it appropriate to blog about it on this Mother’s Day weekend…
There was a mixture of parents at the workshop, mostly mothers (1 father) whose children had a wide range of disabilities. Some were common with Autistic children, or those on the spectrum. I, of course, was the only one with an SBS survivor. Our first act in the workshop was a roundtable introduction, where we talked about our family and the child that brought us to the workshop…I, inadvertently, was seated at the end of the circle. Parents told tales of their children, the dynamics of the household, and the stresses they face. Upon my turn, I described my family make-up, and then went on to tell only a portion of Riley’s story…that I had a perfectly healthy 2-year-old daughter who was violently shaken by her day care provider, and family friend, and that she was now left with a traumatic brain injury and multiple disabilities. Jaws dropped, sighs of shock, and looks of sadness and sympathy followed…
This is the common reaction I face when sharing Riley’s story. And being the person that I am, I often find myself comforting those who hear her story, telling them that it is OK, that Riley is still here with us, against the odds, and has made so much progress. I will quote all of the inspirational sayings, “Everything happens for a reason”, “God doesn’t give us more then we can handle”, etc. to make them feel better. I will note all of the “positives”…that she has made me a better person, that I no longer take things for granted, that I now feel like I have a true purpose in life. Truth is, it is not OK…none of this is OK. SBS is 100% preventable, and this never should have happened to my daughter, or to anyone else’s child!!! Am I happy that Riley is still here??? Absolutely!!! I cherish every single day with my little girl, and every single accomplishment…
To be honest, I have, very privately, been an emotional wreck lately. On the outside, I go about my day, doing what needs to be done with a smile on my face. But I’ve had many moments of sadness lately…maybe it is the time of year (reminders of the assault and trial), maybe it is not being able to attend the vigil, maybe it is the influx of SBS stories, maybe it is the fact that we are facing a change in Riley’s schooling for next year…I don’t know. Maybe I am finally letting myself have these feelings…I have spent so long staying busy as to avoid the hurt, anger, fear, guilt and frustration...and I have been dealing with everyone else’s feelings…maybe it is time to deal with my own…
My goal for this Mother’s Day is to, selfishly, take time for me. I will have no obligations. My only plans will include being with my husband and children, but no agendas. I urge all of the mothers reading this, especially those affected directly by SBS, to do the same. We do so much for our children, for our families, for the cause, for each other…a little “me” time is well deserved!!!
Much love to all of the beautiful Mothers out there, especially the SBS Angel and Survivor Mommies… I wish you all a wonderful Mother’s Day!!!
- Lisa

4th Annual SBS Vigil News Story

2010-04-25T20:59:00.000-07:00

The vigil was a great time for family and friends affected by SBS to gather in support of each other and their children. To watch the news story and read the article on the vigil please click HERE

A big thank you to all of the families and organizations for your support of this event. Here is to next year! Location to be announced June 2010!

5 years from your passing..

2010-04-13T18:55:00.000-07:00

I don't tend to say too much this 36 hour time period because the void that is forever present in my heart remains, and the wound remains open and fresh.. Sometimes I feel I should be positive, and give hope, but today I do not come to you with any of the such. There is nothing worse than loosing your child to murder. Though the situations surrounding could worsen, as I could not have the support that I have beside me.. My mind never wanders far from the day that Madi passed nor the moments or months prior, that include so many feelings... and the memories are forever in my heart..

This is a blog of inspiration, so I feel I must say this. If forgiveness of whom hurt your child or loved one is a burden on your heart and a weight on your shoulders that you can no longer bear, bring the one above in and allow him to handle your heart.

Often times I wish there was much more I could say or bring forth to comfort those in their time of need. It is in a helpless state that I may find the right words, and other times shield my pain by offering a smile to a complete stranger.

For the past 5 years I have learned to "deal" with the fact that Madilyne is gone, and gone forever. I have learned that you never move past the loss of a child, that you only learn how to cope with the grief on a daily basis. It is because of her that I have learned to grow beyond anything I could have ever imagined, and it because of her that I have been blessed with the comfort and love of all of you.

Everyday is a great struggle to keep going, but I have my faith in my heart, and the support of all of you to keep me walking down this path of healing. So on this day I want to say thank you..

On April 14th 2005, Madilyne was pronounced brain dead at exactly 9:50am.. I asked if the doctors were to unhook her from the machines, they would do so and hand her immediately to me.. If she was to take a flight home, I wanted to be as close as I could in that moment to comfort her that I would NEVER let go..

Heres to Madilyne, a little girl that brought so much love and joy into so many lives, and as her legacy lives in, the awareness she brings forth to those in trying times..

All my love to all.
Rachel

Putting Things In Perspective…

2010-04-11T18:20:00.001-07:00

This time of year is particularly difficult on me. Although Spring is just around the corner, and with this season brings the promise of things new and fresh, the anniversary of my daughter’s attack is also accompanying it. I cannot enter into this time of year without reflection on the past, and continued hope for the future. I remember Riley three years ago…playing carefree in the snow on our days off, licking cake batter from a mixer, staying in our pajamas all day, dancing to her songs, coloring and playing play doh. I think about how much our lives have changed in the past three years…our once seemingly carefree lives have been traded in for one engrossed with plans, appointments, and follow-ups. There is always something on our agenda…a letter to write, a phone call to make. We no longer drop things on a moments notice and go…any outing takes careful planning and preparation, even a trip to the store. Some relationships have sadly diminished over time…with our lives “normalizing” (as much as it can be considered “normal”), and the “drama” of the attack and trial fading, some relationships have ceased. I think it is hard for people to understand that we cannot be same people we used to be, because our daughter, and family, takes precedence over everything else. We physically and mentally cannot always be there for others, because everything we have to offer always goes to Riley first. Luckily, we still have wonderful people in our lives that offer us support, understand, and accept this reality…
Even though it is painful to think about who Riley once was, and how our life used to be, in the same thought I realize how lucky we are. Our daughter is still here, and she has made some amazing progress in the past three years, far exceeding the expectations of her doctors and therapists. She never fails to surprise us, and continues to be a source of inspiration, strength, and perseverance. I feel that I have grown as a person and I have accomplished things that I never thought would be possible because of her. As a result of this experience, I feel that I now have a true purpose in life. I am full of hope, and believe in miracles, because I have witnessed one first-hand!!! It amazes me that Riley’s story has touched so many lives, I am so proud and blessed to be her mother!!!
This was not the life we imagined for ourselves when we became parents- the commercial variety, complete with the white picket fence. But, for some reason, this path was chosen for us, so we will embrace it and move forward. My hope for those who know Riley’s story and read my blogs is simple- always appreciate your children, continue to have hope, and know what is important in life. Life can change in an instant, as I experienced first-hand three years ago. Each day is a gift...take each moment and challenge as it comes, and make the best of it.

~Lisa

Hoping for justice, as a trial draws near

2010-01-16T17:16:00.000-08:00

Little Bryan and his family could use the power of prayer, or powerful thoughts from our readers. We can only hope for the best for you Randee, and we are all here to offer you our support.
Many hugs sent your way
{Angela and the SBS Support Network family}

With the trial just a few months away, I am reminded of how far we have come in the past year. I am so grateful for all the amazing leaps Bryan and my family have made, but in the same mind frame I am so angry! Bryan has gone through so much and continues to have to. Sure we have lots of good days, and he is an amazing little boy, doing things some children his age, that have never been injured cant do, but we also have bad days. Days where he doesn’t sleep, he cant calm down and he complains with headaches..

All this is so hard to cope with when the person, who in frustration almost killed my sweet, happy little boy who had a wonderful future ahead of him, is living her life as happy as ever. She sends her kids to the school that she chooses, she smiles with her family and hasn’t missed the things we have missed. She tucks her babies into bed at night and doesn’t have to look down at a scar and be reminded of all the pain that little innocent person endured. She didn’t spend Christmas in a hospital with one child while her others where with family. She doesn’t have to hold down a crying baby while they poke and take x-rays. She doesn’t have to have her stomach in knots waiting for test results that will tell if her child has to take more seizure medications. She doesn’t have to feel like she is abandoning her other children because a sick child has required so much time that day. She doesn’t go to bed at night exhausted and worried about the future health of her child, or the future of her family.

I'm sorry for this being such a negative blog, but it’s the reality of Shaken Baby Syndrome, I think other parents or caregivers of SBS survivors feel this way. Luckily, I only have these days once in awhile, and can way more often smile and know how blessed I am and be thankful to be the mommy of a Shaken Baby Syndrome Survivor, the mommy to Brady and Brayson, and the wife of such a strong man.
I want to ask everyone to please say a prayer for Bryan's recovery as well as for Justice to be served. I know that without the amazing prayer chains my family and I would not have made it this far.

Love to you all,
Randee (Bryan's mommy)

My Blessings (By Lisa)

2010-01-05T12:23:00.000-08:00

I hope all of you experience a beautiful Christmas filled with nothing more than love and beautiful blessings. From everyone here on SBS Support Network

For my family, and their continued support…I am grateful.

For my husband, and my marriage…I am grateful.

For every single person that took the time to visit us in the hospital…I am grateful.

For every donation to Riley…I am grateful.

For every friend who has supported us, and wanted nothing in return…I am grateful.

For Dr. Waldman, who saved my daughter’s life…I am eternally grateful.

For Riley’s school teachers, staff, and one-on-one aide…I am grateful.

For every letter, gift, and card …I am grateful.

For those people who worked endlessly on Riley’s case…I am grateful.

For each person who reached out to us…I am grateful.

For the community of SBS victims and survivors…I am grateful.

For each thought and prayer…I am grateful.

For every message of encouragement…I am grateful.

For those who worried about me and my well-being, while my focus was on Riley …I am grateful.

For each new treatment and therapy…I am grateful.

For every doctor, nurse, and therapist who has helped Riley…I am grateful.

For our coworkers, who donated time, money, and covered for us during our absences…I am grateful.

For my determination…I am grateful.

For every person that supported us during the trial…I am grateful.

For the gift of my son…I am grateful.

For Riley’s continued strength and perseverance…I am grateful.

For every meal or sandwich brought to us in the hospital…I am grateful.

For each accommodation made for Riley…I am grateful.

For each of Riley’s caseworkers…I am grateful.

For every one of Riley’s improvements, large or small…I am grateful.

For every person that still stands by us…I am grateful.

For hope…I am grateful.

For each moment with my daughter, my angel…I am grateful.

Happy New Year!

2009-12-31T19:01:00.001-08:00

Just wanted to take a moment and wish you all a very Happy and Safe New Year! From all of us here at the Shaken Baby Syndrome Support Network! <3

A Christmas Miracle~Bryan's Story

2009-12-17T09:52:00.000-08:00

During this time of year there is a flurry activity out there. If everyone could take a moment and sit down to reflect the many blessings we recieve each and everyday. Certainly someone is struggling today, but to hear such an amazing story, the story of Bryan and his near death, how he fought and won against all odds, is certainly worth celebrating, and in my book, is considered a beautiful Christmas Miracle.

Thank you Randee for sharing your child's story with us, what an amazing little boy you have!
~Angela
On December 14, 2008 I got a call from my ex-husband saying that our son had fallen off the bunk bed while with a sitter and was being rushed to the hospital, unconscious. Once I got there the staff informed us that he was suffering from Shaken Baby Syndrome. He had a subdural hematoma and severe Retinal hemorrhages. He was taken into emergency surgery where they drained the hematoma and removed a 7x7 piece of his skull to allow his brain room to swell. He was on a ventilator and was fighting for his life. The doctors told us he would more than likely die before the next day.
Many prayers went up that night, and we were given our Christmas Miracle.

Bryan made it through this horrible tragedy, caused by another human being and was walking(with help)around the PICU on Christmas Day 2008! This year as I watch everyone rushing around for whatever Christmas Shopping they have left to do, it seems as if they have forgotten the meaning of this celebration. God is Great! We should be so very thankful for the family and friends we all have and thank the good Lord for all the miracles he gives us every day. As I type this Bryan is counting snowflake ornaments on the Christmas tree with his brothers and smiling, laughing and loving, things that medically he should not be doing. After sustaining a brain injury as severe as he did, he medically should be dead, God truly gave me a Christmas miracle and continues to give as everyday passes and Bryan does more and more.
Merry Christmas,
Randee (Bryans Mommy)

Miracles

2009-12-14T13:33:00.001-08:00

Last night our family attended a Christmas gathering at a friend’s home. It was a small party for dinner, and we brought our children along. Leaving our home to go anywhere with the kids is no small task- we have a 17-month-old son and our daughter, almost 5, has many special needs due to Shaken Baby Syndrome. Any outing takes careful planning and packing- plenty of toys, food, and Riley’s special seating and equipment. As we were preparing to leave, Riley had one of her little “meltdowns”…we have no idea why, but when she does this it is always stressful for us all, as she cannot communicate at this time what is bothering her, or why she is so upset. But, we plugged away, put the children in the car and left. As we drove to the Sypniewski’s home, we hoped for the best, Riley calmed herself and we all went on to have a great evening…

I encountered inspiration for my blog last night. As I sat among friends and enjoyed the evening, I watched Riley and remembered how far she has come in such a short time. I remember trying to coax her to open her mouth to take food, and last night she enjoyed plenty of dinner and dessert. I remember car rides to therapy when she would scream from start to finish…now the car rides seem to calm her. I remember her need to be held at all times, and only by mommy, but now she comfortably sits in her seat and “socializes” with everyone, full of smiles. Two-years ago we could have never dreamed of a night like this, but here we were…

In this, the Christmas season, I think that it is appropriate to write about miracles and hope. I believe that miracles exist, and I fully believe that my own daughter is living proof. She was not expected to pull through her attack, but she did just that. Riley has gone on to defy the odds, and through perseverance is still working toward recovery 2-1/2 years later. We have never given up hope that she will continue to progress. She makes strides, slowly, and even though she encounters some setbacks along the way, we embrace each day we have with her, both the good and bad, and continue to move forward…

Being the parent of an SBS survivor can be very hectic. Days are filled with highs and lows, and life is always unpredictable. Aside from dealing with your effected child, and the other “normalcies” of life, there are numerous appointments, therapies, paperwork, and professionals to manage. But, at the end of the day, all the craziness is worth it because you are the parent of a miracle. You have not only been given this gift once, but again when your child became a SBS survivor…a true miracle!!!

Lots of Love and Merry Christmas,

Lisa

Happy Thanksgiving!

2009-11-26T06:11:00.000-08:00

Just wanted to take a moment to reflect and give thanks to all of you for your support of all of the families affected by Shaken Baby Syndrome. Though many of us feel very alone at times, it is all of you that keep us going, and help us to find families that need our support and comfort in their time of need.

Our mission is to provide undivided support for the families, by the families, and such a network is being built to ensure when tragedy strikes no one must walk alone, and for that we are so thankful for all of you.

Wishing you all a very Blessed and Happy Thanksgiving!

Rachel

Being Thankful

2009-11-24T11:08:00.000-08:00

When you are the parent of an SBS Survivor, it is easy to get caught up in the “what could have been’s” and “what if’s”. What if you had just sent your child to a different day care? What if you stayed home with her that day? What if you had noticed the signs that something wasn’t right? Riley should be running around and playing with all the other kids her age, enjoying her youth, without a care in the world…but instead her days are filled with school and therapy to help her get better. If you let it, your mind can take over and take you to a place of deep despair and depression…

During this time of year, I try to reflect and be thankful for all of the blessings I have. Of course I am grateful for my husband, daughter and son, family, and friends who have all been so wonderful throughout this journey. But, in a weird way, I am also thankful to have gone through the horrible experience of almost losing my daughter. I know that it may be shocking to hear, and it may sound harsh, but being at rock bottom really makes you evaluate your life, and find out what is truly important. It was the worst experience of my life, hands-down. Believe me, if I could go back and change things for my daughter and make all of this go away, I would do whatever I had to- no exception. I would give up my life for her...

In our busy lives, we tend to take things for granted. We get swept up in all of the daily drama, all of those trivial things that it the grand scheme, really do not matter. We stress about work, or worry that someone may have said something negative about us or don’t like us. We take it personally if we haven’t spoken to someone in a while, or get angry at them because they haven’t found the time for us. We feel guilty if we can’t make it to every event, or make everyone else happy. We worry that our houses aren’t clean or organized enough, or that we can’t find time to make dinner every night, or get to the gym. We are concerned about our finances and gaining all of the material things we desire…

I, too, get swept up in all of this nonsense. But, I am blessed with experiences that allow me to take a step back, and remember what is important. I no longer allow it to interfere with my life. I live each day knowing what is important, and how quickly things can change. I have become selfish, in a way, because I now do things with my family at the forefront. I value my time with the kids, so if that means not being able to attend every party or outing, so be it- no regrets. If I need to leave work or take time off to be with my sick child, I do it. I no longer let my schedule run my life, or feel guilty about not being able to “do it all”…

Each day is a gift. God has given my daughter, and our family, a second- chance. As difficult as it may be at times, I embrace the opportunity to accompany Riley on her journey toward recovery. I am very thankful for this life, and live each day to the fullest. I hope that others reading this blog will do the same. This Thursday, I will be celebrating another Thanksgiving with my daughter and my family- and realizing what a blessing that truly is. Happy Thanksgiving to all…

Lots of Love,
Lisa

Déjà vu…by Lisa

2009-11-20T06:43:00.000-08:00

It’s funny how you can think you’ve moved on…moved past all that has happened and start focusing on the future. Your life starts to become “normal,” at least as normal as it can be when you have a SBS child. But, in a split second the littlest thing can bring you right back to where you started and remind you of the past- someone can say or do something, or you find yourself somewhere that brings back all of the memories. You force yourself to move forward, but you cannot stop it- without warning, the hurt, anger, betrayal, mistrust, and fear return…

I was called to jury duty last week. It was not a big deal, until I arrived the first day. As I walked up the stairs and into the building, I began to remember. All of the potential jurors were placed in the same courtroom where the criminal trial for Riley’s assault took place. As I sat down, I immediately felt nauseous. I started to recognize faces of people who worked for the court from our trial. I noticed the “In God We Trust” banner on the wall. I found myself staring at the stand where I was forced to testify about the horrific experience of almost losing my daughter. Where I cried endlessly as I described all Riley had to endure while her attacker, and my former friend, looked on, coldly. Seven months pregnant with my second child at the time, I spent a grueling two hours on that stand, relieving every gut wrenching moment and answering every question. I spent many more hours in the courtroom listening to testimony and waiting for a verdict a year- and- a- half ago. The courtroom hosted many difficult memories. I was very relieved to be dismissed from the case as a possible juror, and thankful to be out of the courtroom…

Unexpectedly, my experiences last week really affected me, so much so that I couldn’t even bring myself to blog. I went about my daily business, but I needed time to regroup, spend time with my children and refocus. I needed time to work through my emotions, and let the anger subside. I found myself picking up the pieces and trying to move forward once again. It is a never-ending cycle…

Many people have told me how they admire the way my husband and I handled ourselves during the trial. If it was their child, they would have handled it differently. That they don’t know how we did it. That we were stronger then they would have been, and that they could not have contained themselves the way we did. The truth is, you do not know how you would handle a situation like this until you are thrust into it- something I would never wish on anyone.

We are only human. We are Riley’s parents, and we always put her needs before our own, even before her injury. That is what parents should do- take a step back and look at the big picture. We were not going to do Riley any good from a jail cell. We needed to be there for her, no discussion. But, I am filled with anger, disgust and hatred for the “monster” that harmed my daughter. My trust in others is completely shattered- this woman was my friend, I entrusted her with my little girl, and she hurt her. These raw emotions are there, will always be, and will emerge when I least expect it. I am not a saint, just a mom who loves her daughter so much that I make her my priority, and put my own feelings aside. We instead watched as the “monster’s” lawyer and family attempted to turn the trial into a “Jerry Springer” episode- something that obviously did not help her. As difficult as it was, we contained ourselves at the trial because we felt it was best for her case. We hoped that justice would prevail, and lucky for us, it did…

~Lisa

Lightening strikes twice. Blog by Angela

2009-11-12T14:54:00.000-08:00

After Michael had left this world to live in a better place, I never thought I'd have to see another one of my family members go through the horror of knowing your innocent child, a child you placed in a setting you thought you trusted, to be harmed. To feel this kind of violation is beyond imaginable, the torture my Aunt put herself through, for something that was completely out of her control is not a fun thing to witness, for anyone. To know that justice was never served for Michael, a person would think that lightening could not strike twice in the same family.

This past April, I was informed that my cousin, this time on the maternal side of the family (Michael is on the paternal side). My cousin, my little cousin, my perfect angel cousin, was assalted in the care facility he risides in. Aaron is not a typical child, he has Angelman Syndrome, a syndrome that has left this 15 year old boy with a mentality of a 2 year old, and nonverbal. In so many ways Aaron is an infant in a grown boys body. Aaron was beaten by a man at the facility, this facility is a place where I was employed nearly 10 years ago, this place I even thought to trust, I knew so many of the people and I knew the hearts these people had for the children of the home.

I was fooled, as was everyone else in my family. On my Aunt Julie's weekend to get Aaron, she was pulled aside by an employee to hear the most gut wrenching news ever, Aaron had bruises from an incident, and they assured her the proper measures were taken and the male caregiver was fired. This man, a man with complete knowledge of his own strength and power over any child, non the less a child with special needs. He used his own physical strength to leave Aaron's face black and blue, and even his feet.

This man fled and later "turned himself in" he voluntarily came to the Police Station and openly admitted to striking Aaron several times. In October of this year, this man was not charged, why you may ask. His Miranda Rights were never read to him. He was let off due to some stupid technicality. This man will not have it on his record that he harmed a child, so he could go to another state, free to harm another innocent, powerless child again.

The lightening struck twice, the lightening bolt of failure in the justice system. Surely something must be able to be done to protect the youth of our country...

www.voicesforbubba.webs.com

Tough Times can lead to triumph..

2009-11-07T08:22:00.000-08:00

Though it has only been 4 years, it seems like an eternity when it comes to grieving and allowing the forces of life to take hold of what I once called life. Many paths come into focus in my life, and if I haven't learned anything, life is trial and error. You have to be willing to make choices with all your heart whether those that surround you know what is best for you, and you have to know the boundaries as to what is healthy for your heart.

I know I have stumbled down many paths, and know this is only the beginning and only the surface to the grief that will over take the rest of my life. The only difference for me I feel is that I can allow myself to plummet, allow myself to fall down, and still know how to pick myself up, and stand with my chin up knowing that no matter what happened I can move through it..

Often times I hear of others whom seem to think you move "past" grief, when truly you learn to live through the pain, and the moments of joy that bless your life are moments you cherish no matter what the end is.

I think one of the most difficult and blessed thing for me is that so many look to me for strength, for answers, and for direction in their own lives. I struggle very hard with that knowing that I am human and there will be moments where I will seem less human. Dark moments when I am grabbing on to the one thing that makes me the happiest to get through to the next. But it makes sharing this and knowing I am strength for some, and knowing that sharing my experience has helped them to pull through whatever it is that is darkening their soul at this time that makes my heart fill with love. I suffered deep scars, and sometimes less "likable" moments, but by sharing I have helped someone else.

This all is something that I have learned to live through, and share when my heart is ready. It is not always when everyone else wants to know, but when I go through a moment of distance from others, or a moment when I need time to just dwell that those around me and those who truly care about me and my dreams and aspirations are so understanding of me and situation. Throughout this I have had to make selfish choices at points that put a wrench in my heart, but in the end of the situation, the answer prevailed to where everyone could see the light I saw the entire time.

When tragedy struck in my life I was handed a grieving pamphlet and basically told "Nothing will ever help this...". I begged to differ. I have God in my heart. I have a family of solid gold, and a friendship circle that not many have. I am bound and determined to let others know that because society believes your life is over when tragedy strikes, and that you will only spend the rest of your life grieving, they are wrong. I am only 27 years old, and if you think I am going to spend 3/4 of my life dwelling, being hateful, and not enjoying my life your wrong. My daughter is well taken care of, in a place where hurt does not exist now, and the last thing I want her to see is her mother wasting away her life, spiraling into constant depression, anger, and hatred. I want her to look down and see triumph through tragedy, and that she will NEVER be forgotten by anyone.

Acceptance, of not ever being who you once were, and understanding you do not know who you are becoming is the first step to survival. Often times people assume you should never change and be who you have always been. With the death of a child that is humanly impossible. You have to stand up, put that chin up, grasp those things that mean the most, and walk forward through the unknown, through the fire, and start living life so you too can get the most out of it. Attacks will come. People will simply not like you for random reasons. Move past it. You have a mission in your life to LIVE not just dwell. Living life is not running yourself ragged, but smiling every chance you get. Telling those you love you love them every time you get the chance, and ensuring that not one beat is missed in your life because one life is already lost, but not yours.

So please, if you are in the midst of heartache, grief, depression and sadness, look who is standing next to you, open up to them, seek comfort, and know the sunshine will come, but you have to make the first step to healing. You are the only one who can create happyness.

<3
Rachel

A Grandmother's Heartbreak... Mourning from a different perspective.

2009-11-06T16:51:00.000-08:00

Tuesday, April 12th started out just like every other day. Little did I know that it would change my life forever. I got up and went to work at our restaurant. I had just purchased a car and was going to get the tags for it that afternoon. I went to the courthouse a little after 4pm and it was closed. When I pulled into the circle drive my husband was running across the drive towards our motel and said that something had happened to our granddaughter, Madilyne. I quickly parked the car and called my daughter, Rachel’s, phone.

Upon talking with her co-worker, he told me that Madilyne wasn’t breathing and she was in the ambulance being worked on by the EMT’s.

My heart stopped….literally. My first question was to Rachel… “do you want me to come?” She couldn’t answer me and I knew I had to run and get there. I asked questions regarding what had happened and how did Rachel find out. However, I also asked if she had any bruising. The Dr. said he didn’t see any. Later we would know she had many.

So, we headed out on the highway, not knowing where we were going. On to I-44 and into Oklahoma. But where??? I kept praying for Madi. I kept praying for her to be ok. The babysitter’s husband called me while we were en-route. My first question to him was “what happened”. He gave me an answer which sounded ok, but I would find out later that he had given out many different answers to as many different people.

It was finally decided that Madi would be taken to a hospital in Tulsa. We were the first to arrive of the family. I sat in the waiting room waiting for some word about Madi. She finally arrived at the hospital about 9:30pm. They wouldn’t let me see her. That I would understand because they had to get her settled. Finally a nurse came into the waiting room to let me know she was settled and they were going to take her for a CAT scan. I asked the nurse why the CAT scan because she just choked on her milk…
I was told by the babysitter’s husband… What could they be scanning??? The nurse said I could see her on the way to the scan.

Madi came down the hall on a HUGE white gurney…she looked pale and tiny and beautiful. They were giving her oxygen. I put my hands on either side of her head and kissed her forehead and told her that Granny loved her and she needed to get better. I was crying and so was everyone else around. They took her into the elevator and I started to sob….I got to a wall and slid down it and kept on sobbing. Something wasn’t right! I couldn’t comprehend what was going on….That’s when I knew my life as I had known it would be changed forever.

I felt that I had to put my feelings on the shelf and concentrate on Rachel. I had to help her get through this. Desperation set in. Little did I know how bad it was going to get and our lives would be changed forever in the next 48 hours. I felt if I could just hold her up and get her through this I wouldn’t lose her, too. Fear is as cold as steel. When it grabs your heart I believe you lose yourself. Standing beside Madilyne’s bed, watching the FBI and OSBI take pictures and roll her from side to side hurt me to my core. WHO could have hurt her so badly to take her away forever???

During the funeral I kept close watch on Rachel. I couldn’t lose my child and I couldn’t blame her for the way she felt or acted….Madi was HER child and she was my grandchild. Madi was my heart….

I spent a year watching Rachel, making sure I saw her everyday.

The trial was horrific. I sat in the library behind the courtroom and listened to Rachel cry, sob and scream with the testimony. But my thought was keeping her alive. After the judicial system betrayed Madi and our family, it was time to go home and try to put the pieces together…but the pieces didn’t fit anymore.

I gave up my love….my restaurant and my home. I watched, with dread, my daughter move to Florida and away from where I could SEE her everyday and know that she was alive….I knew she wasn’t “well”, but at least she was breathing. Sometimes you live second by second….waiting for the next breath to come.

It has been 4 years now and it still seems like yesterday. Rachel started to come alive in her spirit about a year ago. By last spring I knew she was going to be “ok” and my worry of “losing” her to the tragedy was over and God told me she was his and I must learn to go on with my life, too.

I didn’t realize that when I put my life “on that shelf” when Madi was hurt, I would forget how to live MY life. I lost almost everything I had…my home, my marriage, my businesses, cars, and almost my sanity, but I kept the most important things with me…my family….my kids…

Life is precious and delicate. Everyday, every moment is a gift from God and needs to be lived accordingly. My life will never be the same…but it will go on and be blessed because I know God will never leave me. Without the very STRONG FAITH I have in Him, I could not have made it through the furnace of flames, to come out victorious on the other side…

With Love and Blessings,
Sue
"Granny" to Madilyne

Picking up the peices

2009-11-04T09:06:00.000-08:00

As the cousin of SBS survivor/victim, I have seen the struggles that go along with the life and death of a child. A child that was given to his mother as a gift from above, had a life that was not meant to be. Leaving your child with someone you trust, handing them your very life and for that trust to be destroyed breaks a person in a million peices. Not just the mother, but each person around her, her husband, her other children, her neices and nephews, her own parents, not one has been left untouched by the horrific act of abuse to a beautiful child.

In the years since the loss of Michael, there is not a day that goes by in those lives that do not wonder the what might have beens. Would Michael be a father today, would he be in college, become the next brilliant surgeon, or even finding the cure to cancer? We as a family can not live with the might have beens, we all have to find the peices that have fallen from our hearts, and try to repair a broken heart. We know that the repair may only be temporary as some of the peices still threaten to fall apart. We must relinquish our thoughts of the might have beens and find some peace in the fact that Michael sits in the hands of the Lord, a place where we all must try to find in the hopes of being with Michael once again, and when we do find him again, we will become whole again and for the first time since this incident, be with him for eternity.

~Angela

Through Mommy's Eye's

2009-11-02T14:17:00.000-08:00

You see a disabled little girl…I see a survivor.

You may not understand her…but I do.

You may not be able to talk with her…but she and I can carry on entire conversations.

You see a girl who must be fed…I see the girl who overcame her feeding tube.

You see her leg splints…I see the fancy new shoes she can finally wear over them!

You see the girl in the special seat in the grocery cart…I see my shopping companion.

You see her glasses…I see her eye contact.

You see her propped in her adapted car seat…I see a girl enjoying her car rides.

You see a 4- year- old wearing diapers…I see my big girl who is potty training.

You see a special bathing chair…I see some smiles during bath time.

You see her kicking her legs…I see her trying to figure out her movements.

You see a girl who can’t hold a crayon…I see a girl who can finally reach and touch.

You see a girl with limited mobility…I see her increased strength.

You see a girl with crazy sleep patterns…I see a girl who will go to sleep when she is ready.

You see her busy with therapy and doctors…I see a rehabilitation support team.

You see a little girl not able to play on her own…I see a girl who interacts with help.

You see a girl who can’t walk…I see a girl who can take steps.

You see the toys she cannot play with…I search for ones she can use.

You see a girl struggling to keep her head up…I see her reluctance to let it fall.

You hear her laugh…I never take it for granted.

You see her smile…I see an accomplishment.

You see her limitations…I see her potential.

You see Riley…I see my miracle

~Lisa

Blog from Trevors mom

2009-10-28T17:14:00.000-07:00

Hey guys I just wanted to let ya'll know that I went and saw Trevor this weekend (no news on the big C scare yet) and he was sooo funny. Taylor and I went tio the nusing home to visit and she lookeds at his finger and toe nails and thought that he needed some grooming. I had her go and get some nail clippers from the nurses station. Well I woke him up. Don't you know ... he rolled his eyes at me. Hump the nerve of me I woke him up. Well sorry Trev, Mommy is here to visit let me see the eyes. Well I went and started to cut the finger nails and got to the last finger where he had the pulsox tape on and ok I needed his nail so I untaped it, don't you know bells and whistles ... 2/3 nurses come running in. I told them just cutting his nails so they leftme alone and let it go. Don't you know that it took me 45 minutes to get the darn little thing to start reading right again since his fingers are so darn cold and skinny. CRAZY. I couldn't even tell you how many times I had Taylor hit the mute button. Well it was feet time. I went and pushed his pillow shoes back and his little legs just went flailing, (must have been ticklish), I joking told Taylor to sit on Trev so that I could get his toes done and she said "no mom, his brains is already scrambled up." I didn't want to get mad at her or cry so I let it go and told her no and said "No, on his legs" she said "I will break his legs", "but hsi one leg is all metal he will be all good." we both had a chuckle and she went and brushed his crazy hair while I continued to work. She looked at his nails adn said, "they're alive run for your life befiore they eat us." It was a laugh riot. His toesnails were really yucky and he does need to see a podiatrist but anyway. he just kept back moving his foot. I showed Taylor that he had tickley feet. .... So to the end of the visit. (The really funny part) We went to leave and I went to tell him bye and give him a kiss and he gave me a grone like a growl, then Taylor kissed him and nothing, she kissed him again, and nothing again, then she gave him a big time kissey face barrage a kisses and still nothing. that does it. My son growls at me and does nothing to his sister. Well I giess no matter how handicapped kids may be. They still give their parents an attitude when they become a teenager. AAAAAHHHH! thought you would like to hear an uplifting story. It was a laugh riot to my therapist this morning. But I thought mom's of survivors would really get a kick out of it.

Lots of love.
Trevor's mom
Abigail Cameron

Fear...

2009-10-26T14:27:00.000-07:00

On Friday, my daughter underwent a procedure of Botox injections to help with the rigidness she has in some of her muscles as a result of her brain injury. The hope is that the Botox will help to numb some of the muscles causing the tightness, which will give Riley more use of her limbs. Long- term thought is that the brain will create new “pathways” relating to the muscles in a comfortable state, so she can be weaned off the Botox- retraining the brain to send messages to tell the muscles to stay relaxed …

I always have so many ideas about what to write for this blog- looking back, we’ve been through so much these past few years, I could write about every feeling and experience to exhaustion. I chose to share this information about Riley because this seemingly simple appointment brought me through so many emotions. This was the first procedure Riley has endured since she left the hospital two- years ago. It was very difficult for me to bring her back into a hospital, to put that gown on her, and to watch them wheel her away from me and into the operating room. I knew that this procedure wasn’t invasive at all, that they were only using the anesthesia to make Riley comfortable since she was receiving so many injections. There was no IV, no breathing tube. All logic aside, as much as I told myself it would be OK, it was still hard. I found the time moved extremely slowly during her only ½ hour procedure, and I kept watching the clock…

Riley’s procedure went well, and she recovered better then expected. She has been a trooper through this entire ordeal, and this time was no different. I tell myself that at her next appointment 4 months down the road that I will feel differently- it won’t be a big deal, that she will be fine. However, realistically I know that the moment we arrive at the hospital, I will feel the same way I did on Friday. And I think that’s OK. It’s the result of my experiences, and those cannot be changed. I love my daughter and will continue to be strong for her despite my own emotions. I must learn to embrace the fear because it is now a part of me…

~Lisa

Turning negative into positive

2009-10-20T08:00:00.000-07:00

So as many of you know it has been 10 years since my son was assaulted. I have been thru many many different stages. And I go back and forth between the good stages and the bad stages.

It is very challenging to try and stay positive and not let the negative affect our lives.

Sometimes I get down in a slump, but eventually I do climb out of the slump and try to do what I can to be positive and to try and make an impact for the cause, and for our children.

What is it that keeps you positive, and looking forward to the days ahead?

Love to all

~Tara

The Lonely Road

2009-10-19T09:44:00.000-07:00

About a year ago, my good friend Kate was visiting from Chicago, and we were talking about Facebook. She had just started using it, but I wasn't sold, I had mixed feelings about it. While Riley was in the hospital, some friends had put together a website for us to use for the purpose of updating her progress and keeping everyone informed. The site started encountering problems, and eventually we stopped using it. People were still interested in Riley's recovery, so I decided to try Facebook, which would hopefully do the same thing. Coincidentally, it was at that time that one of Riley's former Early Intervention Teachers sent me an article about the Sarah Jane Brain Project. I was intrigued, and researched it on-line. I also searched and found information about the Foundation on Facebook, but I also gained so much more...

Two years into Riley's recovery, we were very alone. Don't get me wrong, we have a wonderful support system of family and friends, therapists, doctors, teachers, etc...but not one of them truly understood what we were going through. Everyone was so supportive and encouraging, but this was not happening to their child- it was our child. There was not one other child in the hospital suffering from SBS (thankfully) while Riley was there, and there were certainly no SBS support groups for parents available to us. It was a very lonely road...

I am so grateful to have found such a wonderful group of SBS parents through Facebook, and through the SBS Support Network. I have now connected with others who truly understand what we are going through. We share stories of our miracles and angels, cry for our losses, and rejoice over every triumph. Brad and I are no longer alone. We are understood. I hope that other SBS familes are lucky enough to stumble upon this blog. I share my daughter's story and write with the hope of helping someone else to avoid the loneliness...someone just like me.

Being thankful

2009-10-12T21:30:00.000-07:00

Some days its hard to see the sunshine thru the clouds

Some days its hard to get out of bed

Some days are good, happy and bright

How do you handle the stresses, the hardship, the happiness?

What gets you through the hard times, and what makes the happy times even better?

Sometimes its hard to be thankful for everyone, for a family that has been thru such a traumatic time....how do you stay positive?

For me when I have my hardest moments, all I have to do to keep going, keep looking up, is to think of my special boy that beat the odds. And that I have to be strong for him.

No matter what happens in your life, I hope that you will continue to look for the silver lining, and be thankful for this day, the sun, the air.

Love to all

Tara

Meet Lisa and her little miracle, Riley

2009-10-12T12:34:00.000-07:00

We would like to welcome Lisa, mother to Riley, whom suffered Traumatic Brain Injury at the age of 2. Lisa thank you for becoming a part of this blog team. :)
~Angela

My daughter was a healthy, happy, energetic, beautiful, social, and bright child. She was just over 2- years- old, and was hitting all of her milestones early. There were so many things Riley enjoyed doing- dancing, swimming, coloring, playing with her stickers and play doh (i.e. her “colors”) with daddy. Riley loved her “guys” (little figurines she carried everywhere with her) and her Disney shows and movies. Riley loved to look at books, and could tell me what every picture was. She loved playing with other kids. She had even learned counting in Spanish and some sign language. She loved being outdoors, going for walks, and going to the park to play on the swings and slides. Riley was honestly the model child, I couldn’t have asked for a more perfect little girl.

On March 27, 2007 our lives were changed forever at the hands of our day care provider, and family friend. The day started out as any other- we awoke in the morning, got ourselves ready, said our goodbyes, exchanged our kisses and “I love you’s” with Riley’s dad, and left on our way to the babysitter’s home. Before I left that day, I said goodbye and I love you to my little angel and gave her a kiss, as I always did. She was all smiles, in her new purple Gap velour sweatsuit holding on to her yellow sippee cup filled with milk, playing with one of her friends- I’ll never forget that vision, because I will never see my little girl in the same way again.

At about 12:20 PM, I received a phone call from our babysitter stating that something was wrong with my daughter, that she had been put down for a nap, and she wouldn’t wake up. My stomach dropped. I asked if she had called 9-1-1- she had not. I instructed her to do so and I immediately gathered my things and ran out of the building.

Riley was air lifted to Albany Medical Center that afternoon. It was in the ER that we learned Riley had suffered a traumatic brain injury- we were in shock. She was fine when we dropped her off. They informed us that she needed to be rushed into surgery to save her life, and we immediately gave permission to do so without another thought, anything to save our little girl.

The first of many miracles to come over the next year, Riley had made it through surgery- but she was not expected to survive much longer- her chances were slim. If she did survive, there was no way of knowing how she would be, but most likely, she would never be the same child again. The neurosurgeon explained the severity of her head injury and prepared us for the worst- we hoped for the best. We just wanted her to survive. Riley would be fighting for her life over the next few days.

We were living every parent’s worst nightmare. Riley was hooked up to a respirator, her little chest jerking up and down in an unnatural way. She had tubes coming out of her nose, mouth, chest and arms. She had bandages around her head where there were endless staples from her surgery- they had removed her left bone plate to allow her brain to swell, and they had shaved half of her hair off. There were monitors next to her bed that showed her heart rate, blood pressure, respiratory rates, and the amount of pressure in her head- the numbers appeared to be constantly changing. There were two poles behind her bed filled with medication delivery devices, at least 5 on each. She had two nurses assigned just to her, sitting right outside her door at all times, monitoring her care. Her little face was so swollen, her eyes were bruised and swelled shut and there was dried blood on her face. I couldn’t do anything other than stand there helplessly, hold her hand, pray and cry. We didn’t speak because the doctors said that she would try to hear us and it would strain her too much to try and focus on anything- they wanted her to rest. The room was dark and quiet except for the beeping of all those machines and the noise of the respirator.

During the next 3 months in the PICU, Riley defied the odds and was so strong, she endured more then any child should have to. Her heart stopped beating and she coded twice while I stood by and watched helplessly as doctors worked to revive my daughter- pumping her chest, injecting her with drugs, shocking her little heart. The second time in May of 2007, they had to put her back on the ventilator to help her breathe – at that time they also found a blood clot and spent over a week trying different drugs to regulate her heart rate and blood pressure. She faced surgeries to clean an infection from her brain, to replace her skull plate, to clean up her incision from the initial operation, to have a ventricle drain put in, to have a permanent shunt placed, to insert a feeding tube in her stomach (she had this surgery twice and went to the ER three times to have it corrected), she faced multiple infections in her blood and in her cranial fluid and spent over a month on antibiotics, she spiked high fevers, suffered morphine withdrawal (twice), had tremors so severe they prevented her from sleeping, she was also placed on methadone to help with drug withdrawal. I’ve lost count of the number of CT Scans, EEG’s, MRI’s and other medical procedures and tests Riley has had to suffer through. I stayed at the hospital with Riley the entire time, I couldn’t bring myself to leave her side, I was terrified that I was going to lose my daughter.

After leaving the PICU in June of 2007, Riley was finally transferred to a rehabilitation hospital. The first two weeks Riley didn’t do much other than cry both in and out of therapy. There was nothing we could do to soothe her. She was able to get some physical, occupational, speech and recreational therapy but it was very stressful and exhausting for everyone. She couldn’t eat any solid foods, and wouldn’t open her mouth for months. Riley was unable to hold her head up after so many months lying in bed and had no control of her neck or torso. She would drool all the time because she couldn’t swallow properly. She had a condition known as “drop foot” from lying down. Her hands also needed braces and were often stuck in a fist-like position. She would often “tone” which is when she would hold her whole body rigid and then cry. It was difficult to break her of this, and she still does it occasionally, even on medication to control it.

On top of all of Riley’s medical issues, my husband and I were considered suspects of this brutal crime, and were pulled from Riley’s bedside on countless occasions to be questioned and to make statements to police officers, social workers, attorneys, and Child Protective Service workers. We were forced to leave our daughter and endure reliving the most horrible experience of our lives over and over again, even on the stand at Grand Jury, Family Court, and finally, over a year later, at the Criminal Trial. Everything in our lives was put under a microscope- our parenting skills and style, our decisions, our family and friends, our pets, our love and care for our daughter. My husband and I eventually had to come to terms with the realization that our friend had in fact hurt our daughter. We’ve had to live with the guilt of leaving our daughter with someone we thought we trusted unconditionally, someone we loved, and someone we considered a friend. We went to trial in April 2008. Riley’s attacker was found guilty and sentenced to 18 years in state prison for the assault.

In over two years Riley hasn’t walked, fed herself, or sat up without assistance. She is finally able to say “hi” and “on”. She is legally blind and will face that challenge for the rest of her life. She must take seizure medication and muscle relaxers on a daily basis. She still cannot fully hold her head up for long periods of time, and she still needs to be held or be in a special chair or standing frame that holds her up. Riley is steadily making progress with her eating, and luckily the feeding tube is gone. We have purchased countless sets of braces for Riley’s legs, two special chairs for her to sit in, a special car seat, hand splints, endless medications, glasses and vision therapy. Riley has recently started potty training. She attends an integrated preschool program where she gets physical, occupational, speech, assistive technology and vision therapy. She has a one-on-one aide to assist her in every activity at pre-school. She still attends therapy at the hospital once per week to work on her walking, and is also enrolled in hippotherapy (horseback riding) and swim class. She has faced numerous dental appointments to correct oral issues sustained from months of breathing tubes and her tonic bite, by not allowing us to properly care for her teeth. Riley will have Botox treatments next month to help loosen some of her muscles.

Riley’s future is so uncertain, as is the nature of a traumatic brain injury. Every case is different. The brain controls everything, and the healing process is very slow. She faces years and years of continued therapy. My husband and I remain optimistic, because we love our daughter and refuse to believe that this is the way she will be forever. We want our daughter back. We will continue to provide Riley with everything she needs to work toward recovery, no matter what that entails. Every small accomplishment is huge for us. Her smile and laugh gets closer to the one we remember, a simple function that took Riley almost 8 months to gain back. We continue to hope. Riley has proven to be stronger then any other person I know, even at the age of 4. She is my inspiration. The doctors have prepared us for the worst case scenario- that Riley will stop improving, and that she will require assistance with everything for the remainder of her life. My husband and I realize that this may be Riley’s reality, but we choose to take each day as it comes, to be grateful that our daughter is still alive and with us, and to provide her with all of the love and support she deserves on this journey. We will deal with each issue as it comes and are still trying to pick up the pieces, focus on the future, and move on.

We are family….. We are SBS family!

2009-10-10T08:00:00.000-07:00

So I was sitting here thinking what should my blog today be about.

The last few days my thoughts have been with some of our SBS family. We all face challenging times, hard times, good times. All of us continue to fight against SBS and spread the word about the dangers of shaking a baby. We all go thru periods of more challenging and trying times.

We continue to speak out, to fight hard, and sometimes to pull back and take time to step back and take care our ourselves and our families. Then when we can, we step back out again and continue the fight that never comes to an end.

I guess I just wanted to say in my blog, that WE ARE FAMILY! We are here for each other, we are here for support, for crying, for anger, for understanding.

No matter what you may be facing on your own personal journey with shaken baby syndrome, whether it is an “up” time or a “down” time, we all go thru different phases, we all go thru a wide range of feelings and emotions.

A word of encouragement to all of you. Hang in there, be strong, lean on each other when you need, speak out when you can, be silent when you need to. And TAKE CARE OF YOU!

We are all passionate about Shaken Baby Syndrome, and want to see an end to this horrible crime! But take time to take care of you, so that you can do what you want to do in your journey. And most importantly, reach out if you need one of the SBS family, we are here.

All my love

~ Tara

Hello! From Mandy ~

2009-10-09T03:47:00.001-07:00

Hey there everyone! I know it has been a little while since I last blogged. I apologize for my absence. This time of year is always a tough one as the anniversary of the day my little girl became an angel is right around the corner. As every Fall approaches we all see the beautiful leaves changing colors and falling off the trees. The summer heat slowly starts to fade away and we find ourselves wrapped up in blankets and coats. Each year we get our pumpkins together and we get busy baking in the kitchen. I live each day of my life with deep pain inside my heart that no matter what I do will never go away. I have this pain all the time, but everything about fall reminds me of all the horrible things that happened to my little girl. Each year I have taken this challenge just as I have with every other one. It’s never easy, but I manage to get through it.

OF course this year is the same thing with the exception that I have been faced with a new challenge. I now have a baby boy that l must continue to put a smile on my face and no matter how bad I am hurting stay positive and happy for him. I want to keep my blogging as positive as possible as this is a place for ALL of us to come for support. With the circumstances arising in my life I feel that is best for me to just take a step back right now. I will be back once I get through this and I will share with you my experiences through this part of the journey.

All my Love

Mandy

Nightmares

2009-10-07T08:55:00.000-07:00

I know some of you probably have these moments too. The come and go, and I havent really had them for years. I dont know if they are coming out now because there is other drama going on in my life, but the last few nights I have had nightmares of Kyle's assault. They are very detailed and I can see the faces so clearly. Which at least for me is not very normal. The are very upsetting, I hate having them. It has been 10 years since Kyle was assaulted. Why am I having these nightmares now. The child abuser could get out on parole next year... perhaps that is on the forfront of my mind, maybe its the challenges with stresses in life that is bringing them on. I dont know.... I just wish they would go away. I have woke up screaming the last few nights. It is a horrible feeling.

Does anyone else experience these nightmares of bad dreams?

~ Tara

SBS In the News - Oklahoma

2009-10-06T20:31:00.001-07:00

KOKH FOX 25 :: Top Stories

Shared via AddThis

Hope for the future

2009-10-06T08:10:00.000-07:00

I have many hopes for the future. For one day my son to be able to live a life where he is happy, and successful, however he determines that will be. The doctors have told me, that he will never be " a rocket scientist" but that we will teach him life skills so he can live on his own and have a productive life.

We will never know what Kyle could have or would have been, but he will be the best he can be, and we will be very happy that he is just even with us.

I hope he makes some friends, and we hope that he will find good people for his life as he grows, people that love him for who he is and are true friends.

I also have very high hopes for the future regarding Shaken Baby Syndrome. I hope that thru the work of many many dedicated people and organizations, that we see a decline in the number of babies that are killed or injured.

I hope to someday not hear a heart wretching story about another family that has to be on this journey. I know SBS will always exist, I only hope that we hear more about education and prevention and less about it happening to our babies.

~ Tara

A Poem to Share...

2009-10-03T10:29:00.000-07:00

Shared by Lyndsay Goodwin - mommy to Zach, SBS survivor

Remember that he is,first of all,my child.

Let me see him smiling in his sleep and let me think about how handsome he is and not about how delayed that smile was in coming.

Help me not lose sight of my son in the shadow of his limitations
I know that you care for my child and that you work hard with him.

I need your expertise to help him become all that he is capable of being.

You need my help in understanding who he really is and in following though at home with things that are important.

Remember,though that you send him home at night and have weekends off and paid vacations.

Let me have the luxury of having a vacation,sometimes physically, sometimes just emotionally,for a day,a week,a month,without your judging me.

I will be there for him when you are long gone.

I love my child with intensity that you can only imagine.

If on a given day I am tired or cross with him,listen to me,lighten my burden,but do not judge me.

Celebrate with me,rejoice in who he is and who he will become but forgive me if from time to time I shed a tear for who he might have been.

Bringing us all together... with hope

2009-09-29T17:59:00.000-07:00

The Shaken Baby Syndrome Support Network is formed for the families, by the families. We are here to share our stories, with the hope of helping someone else in comparable situations as ours which in some cases, go silently..

Last week, a blog entry was posted in regards to a news story about Justice for a family after 27 long years of hoping and praying. Many knew the reasoning behind the posting, and others had questions. So I am here to elaborate on the situation sharing my own personal journey, which is my personal journey, and could be deemed "opinion" in legal standings.

When I first was gathering my thoughts and feelings regarding what I felt and what so many others felt was needed for Shaken Baby Syndrome, I had one consistent thought in my mind.. "I just want a place where families can go and read. Read about coping, read other stories, and share at their own will and desire when they felt "ready" to do so in a non-opinionated environment." With that being said, knowing this is our inspirational blog, our blog of hope for those with little to none in their lives at certain points, I want to bring one thought to the forefront. If the resource can not help me.. It CAN help someone else.

Let's take a look for instance at the numerous support groups around the nation geared toward helping those with substance addictions. They are the life saving tool for so many in our world today, but in my personal case, I am blessed as I have not had to use those resources. But, they are there to help those seeking help with the problem at hand for them.

In my personal journey, the hardest subject and detour to deal with is the anger and rage instilled in my heart with no warning, and no answer as to how to deal with it "properly". I have had moments where I did not know if I would see the second because of the thoughts steering through my mind. The ones closest to me were the one subject to the most intense anger anyone should ever have to deal with. I am the girl who stood in front of the mirror in my bathroom, taking my acrylic nails to my face because I could not stand the anger and rage inside of me. I am the girl who has taken a knife to the counter top and carved "hate" into the counter top because there was no where to "point" my anger. I am the girl who refused to go to counseling for my anger and rage issues, simply because I thought I could get through this all on my own. I am the girl who wore the vulgar t-shirts and kept everyone at arms length, because I was the girl who was suffering alone, in the darkness, in my room, crying myself to sleep because I did not want to talk about it, in fear of someone else in my family hurting even a figment of the hurt I was coping with on a second to second basis.

All I wanted was to have this big answer book, this pamphlet that explained to me how to make all of this life shattering pain in my heart go away. Living through it and dealing with it, I wanted a place I could read, and sought for quite sometime other families and their stories, just to know I wasn't alone, and that when the time came and I was ready I could reach out and start this process called "healing".

I hope that everyone, and I mean all of you, whom are checking in on our blog, and following all of our postings, know that just because something may seem a bit "off" or a bit "awkward" that this is our lives, and our lives from every walk, from every perspective. It may not bring hope to you, but it just might for the next person that reads our site. In the coming weeks and days you will hear recollections from parents, grandparents, aunts, uncles and cousins, and many other friends and relatives of the children of SBS to see things from all views of the tragedy, and the hope that the surviving children of SBS brings to all of us.

Unfortunately for my daughter, Justice did not prevail. I think there is a completely separate grieving process when such a system as that fails.. There is a person, a person whom stated what they had done, and talked about it openly.. and attempted to "do the right thing" by stating the truth.. and the system failed my family. Do I think the outcome would be any different grieving wise? Yes, I do. There isn't "that" kind of closure for my family, because just as I sit here and type this, this woman is sitting at home, with her children...

When Ricky's mother contacted me with his story I knew in my heart I had to post the story. Not only for the family's sake, and the triumph after 27 years of longing for justice that they must feel, but for all those families, as myself, that hold hope that maybe, just maybe something will come out, something might be said, or done that could just make the failing of the justice system justified, with the perpetrator in jail. I would be lying if I told you it is not something that I think about everyday.. because I do. Too many people know the truth, and I want everyone whom has been in my shoes, and who did not receive justice, to come forth, and feel they are not silenced just because of a justification.

Yes, this is America, and you are innocent until proven guilty. When you break down the lines of those whom have been failed by the system, you start to see the haze, and understand, sadly, you are not alone. I have seen too many families silenced because they have been told that they can not speak of this, because of the verdict in the court room.

This blog is a blog of hope and a blog of inspiration. I invite all of you to come forth when you feel you are ready, to share your stories, and to know that maybe those things left in your heart that you feel uncomfortable speaking of, can be easily typed and posted anonymous. The only way to move through the act of violence is to speak of the unconditional terms of the justice system. We don't just welcome parents of survivors, or parents of victims, or parents children whom have been shaken and have or haven't received justice. We welcome you ALL to take part. In order to be the support group we aspire to be, we have our mat at the door and a pot of coffee on.. Come on in.

The process we must live through is not always inspirational, but know our goal is to help you, the ones suffering in silence, and work together with the ones seeking to do good in their lives to help others know they do not have to suffer alone. We stand together, and make a declaration of hope to the families of Shaken Baby Syndrome. We are here, when your foundation is crumbling before your feet, read silently or speak loudly, because we are, the Shaken Baby Syndrome Support Network.

All my best, and warm thoughts;
Rachel

Accomplishment

2009-09-29T04:04:00.001-07:00

Ok so I know this is such a little thing. As you all know, my son is a survivor of Shaken Baby Syndrome.

I know you all appreciate all the little accomplishments. Today was another one of those days. We have been working so hard. He was finally able to tie his shoes all my himself today.

Its even these little milestones that our kidos meet that are big for any child, but for a survivor of SBS, every milestone is a celebration.

I would be interested in knowing some of your childs successes. Please email me at tyandtaramitchell@yahoo.com

Justice, Forgiveness, Acceptance

2009-09-26T09:28:00.000-07:00

Lately the topic of acceptance, justice, forgiveness have been on my mind.

Everyone is different, everyone has different beliefs, everyone has different thoughts.

Its not so clean cut for me I guess. I have come to “accept” what happen to my son, and to “accept” what we have in our lives and that we may have challenges and issues ahead because of his assault.

I can forgive most things people can say, or do. I might be a little bitter for a little bit, or angry of whatever, but I have forgiven everyone everything I think in my life. But I will NEVER forgive him for what he did to my son.

Some people may judge me for this. Some people may say I can never move on until I forgive. I cannot forgive. This is something I simply can not do. I will “accept” what happen for what it was, however forgiveness is something he will never have from me.

Justice…..again everyone I’m sure have a different view of what justice is and maybe to what extent. I can only speak from my heart. Although I am pleased that he was found guilty and was sentenced to 13 years in prison, and we were lucky with such an exceptional sentence, as many of you know, some people get off “scott free” and some serve little time, some serve more time.

In my opinion there is no “justice” for a person that abuses a child. Whether the child is a survivor or an angel. There is no amount of time that a person could serve that could bring the child back, or bring the child back to the child they could have been.

There is no sentence that a court of law could give that would be justice for me. I know that some how some way he will pay for what he did. I guess my version of “justice” is that he will never be near this boy. He will never get to see him grow, he will never get anywhere close to him, and he misses out on the best thing in this world. Watching and loving a child as they grow.

So whatever your version of acceptance, forgiveness and justice, I hope you find that special place within yourself so that you can have some amount of healing and peace.

Love and hugs families <3 Tara

True Justice

2009-09-25T03:37:00.001-07:00

According to Dictionary.com the definition of justice is: to cause to come before a court for trial or to receive punishment for one's misdeeds

July 9, 2007 …

I couldn’t wait for this day to get here. It was the day he was to be sentenced for my daughter’s death. The day I would finally be able to close this chapter of the book. I looked forward to this day, I planned for this day. I naively believed I would feel some sort of relief knowing he was paying for his crimes.

He had pled guilty in a plea agreement and we knew he was facing 30 to 64 years in prison. I was determined for him to get 64 years. Even though I personally felt the maximum of 64 years was not going to be enough to punish him for what he did.

When the judge delivered the sentencing of 40 years, I didn’t feel happy. I didn’t feel sad. I didn’t feel relief. Much to my dismay, I didn’t feel any different. The pain in my heart was still there. It didn’t bring my little girl back to me. I still didn’t get to hold her or kiss her or watch her grow up.

I am not saying I was not grateful for the punishment he did receive. I know many families who do not have the satisfaction of knowing the person who brought harm to their precious child has been punished. But in the end this monster has “3 hots and a cot” provided by us, the taxpayers, for at least the next 18 years when he will become eligible for parole.

Ultimately, I believe true justice will served on Judgment Day. Because on that day all the people who have hurt our children, whether they were convicted or not, will have to answer to their Creator. In my opinion, THIS is when true justice will be served… Until that day they will all have to live with the haunting horror of knowing what they have done and the fear of what is to come.

-Mandy

Progress...

2009-09-24T03:53:00.001-07:00

Today we received a letter from the State of Washington Governor and the Superintendent of Schools. Every student in Washington from 3rd grade probably received a similar letter in the mail within the last few days. 3rd graders had to take the WASL test (Washington Assessment of Student Learning (WASL).

Although so many student I’m sure received the same form letter from the Governor congratulating them on passing the WASL, this has such extraordinary meaning to us.

Even though he scored just barely in the average range, he IS in the average range. When we first started this journey, he was way below his age range and way below other kids his age. He has tried very hard, worked very hard and had so many challenges to be doing so well.

So I am very proud of him, and I wanted to share this accomplishment with you.

No matter what mountains we may have to climb on this journey with a survivor, we can get there, we will get there, and together we will help our kids have happy lives.

I have made friends that have survivors and who lost their babies and they are angels looking down on us now. Although I truly do not know what you have gone thru, I just want you all to know, that I am here for you if I can be of support in anyway. I may not understand completely, but I do care, my heart is with you and I will lend an ear if I can.

I hope I was able to help today with our talk today my friend!

Love and hugs to all the families. <3 Tara

27 Years and Justice is finally Served!

2009-09-23T03:47:00.001-07:00

Defendant Called "A Monster"
WTAP News
More than 27 years after he allegedly shook his infant son to death, the case of a North Carolina man finally goes to trial.
Posted: 7:34 PM Jun 16, 2008
Reporter: Todd Baucher
Email Address: todd.baucher@wtap.com

Story 10 Comments Font Size: One of the stepchildren of 48-year-old Richard Poore called him "a monster" on the first day of his trial Monday, one who often committed acts of abuse against him and his relatives.

"He'd just pick who he wanted to hit," said stepson Charles Hinton. "He'd want my brother to say curse words and my brother wouldn't say them, and he'd just punch him. I remember him doing things to my little sister."

And Hinton, who was five and a half years old in 1981, says he saw Poore violently shake his own son, Richard, Junior: violently enough to cause the four-month old infant's death.

"I just saw him pick him up and...run him against the wall," Hinton recalled, fighting back tears, "and just shook him and shook him and shook him."

Stepdaughter Heather Dunn says she was at school when the incident happened. she was notified by young Ricky's mother.

"I remember her saying he was gone," Dunn said. "And my (birth) dad came over and picked me and my brother up...and I remember we stayed with him."

Poore's attorney, Ira Haught, did not cross-examine witnesses, and declined to give opening statements until the defense begins presenting its case. That's something Pleasants County Prosecutor Tim Sweeney told us could happen as soon as Tuesday.

W.T.A.P News reported when Poore was arrested in 2006 that the case took more than two decades to prosecute because the completed autopsy report was never filed
_____________________________________________________________________________________

This news story was submitted by the mother of Ricky. They have been going through the process for justice for 27 years! Little Ricky will never be forgotten, and though it took so long to get him justice, justice has prevailed.

Coping with Other Babies..

2009-09-23T03:41:00.000-07:00

When I lost my little girl there was nothing I wanted more than to just hold her and love her and just have one more minute with her. Every time I would see another mother with their new baby I couldn’t help but be sad. I knew that this was an emotion that I would need to overcome because if I continued to be like this it would turn me into a bitter person and I refused. I tried just pretending like everything was okay when I was around babies and that didn’t work.. At the end of the day I would go home and just cry. I tried avoiding babies at all costs. Not fair to me or them. Then one day I decided that I was going to visit another family whose child was born that morning. I traveled to the hospital with all the fear in the world that seeing the baby in a hospital would just break my heart. I turned on the song “Jesus Take the Wheel” and drove to the hospital. I walked up there went to the room walked in the door. Then boom.. I couldn’t wait to get my hands on that baby. It felt like God was leading to that moment in that room to heal me and comfort me. I held that little boy for a really long time. I am sure I wore out my visit and that they wanted their baby back, but they understood. I was perfectly comfortable being around that little guy from that moment on.

To this day the only way I am able to really feel comfortable around a baby the same age and younger than my daughter was is if I go to the hospital and hold the baby when they first arrive into the world. I think that this my way of coping with the emotions that I feel when I see a mother holding her new baby.

-Mandy

Special Mother-

2009-09-22T03:59:00.000-07:00

Happy Tuesday Everyone

Mandy shared a poem that someone had shared with her, so I wanted to share one that someone had given to me after Kyle's assault.

This is for all of you that are parents of a survivor, or special child :) Love and hugs to you all untill Thursday!

The Special Mother

by Erma Bombeck

Most women become mothers by accident, some by choice,
a few by social pressure and a couple by habit.

This year nearly 100,000 women will become mothers of handicapped children.

Did you ever wonder how these mothers are chosen?

Somehow I visualize God hovering over Earth
Selecting his instruments for propagation with great care and deliberation.

As he observes, he instructs his angels to take notes in a giant ledger.

"Armstrong, Beth, son. Patron Saint, Matthew."

"Forrest, Marjorie, daughter. Patron Saint, Celia."

"Rutledge, Carrie, twins. Patron Saint...give her Gerard. He's used to profanity."

Finally he passes a name to an angel and smiles. "Give her a handicapped child."

The angel is curious. "Why this one, God? She's so happy."

"Exactly," smiles God. "Could I give a handicapped child a mother who knows no laughter?

That would be cruel."

"But does she have the patience?" asks the angel.

"I don't want her to have too much patience, or she'll drown in a sea of self-pity and despair.

Once the shock and resentment wear off she'll handle it."
"I watched her today.

She has that sense of self and independence so rare and so necessary in a mother.

You see, the child I'm going to give her has a world of it's own.
She has to make it live in her world, and that's not going to be easy."

"But Lord, I don't think she even believes in you."

God smiles. "No matter, I can fix that. This one is perfect. She has just enough selfishness."

The angel gasps, "Selfishness? Is that a virtue?"

God nods. "If she can't separate herself from the child occasionally, she will never survive.

Yes, here is a woman whom I will bless with a child less than perfect.

She doesn't know it yet, but she is to be envied.

She will never take for granted a spoken word.

She will never consider a step ordinary.

When her child says momma for the first time, she will be witness to a miracle and know it.

I will permit her to see clearly the things I see--ignorance, cruelty, prejudice--and allow her to rise above them.

She will never be alone.

I will be at her side every minute of every day of her life
Because she is doing my work as surely as she is here by my side."

"And what about her Patron Saint?" asks the angel, his pen poised in the air.

God smiles.

"A mirror will suffice."

-Tara

Mommy

2009-09-21T04:10:00.000-07:00

This poem was given to me moments after Nicolette’s funeral and since that day I have read it at least once a day. It gives me strength, hope, and encouragement and I would like to share it with you. I hope everyone had a great weekend. Be back Wednesday. Hugs

To My Mommy From Heaven

Mommy, don't cry,'cause God is holding my hand and telling me everything is okay

Mommy, God said that I will never want for anything and I will still feel your love all the way up here

Mommy, guess who helps watch over us while we play? They are God's helping Angels

Mommy, I am not afraid, my family is all here, They came to me when it was dark and held my hands

Mommy, God said, if you feel sad, remember this: I'll be the gentle breeze that brushes your face, the sun is my smile and the rain is washing away your pain

Mommy, I have to go now. I send you all my love on the wings of an angel..

-Mandy

Life Today...

2009-09-19T08:11:00.000-07:00

It has been 10 years since my sons assault. We have been thru many ups and downs. The first couple of years were very hard, but we took it a day at a time. He had intense therapy for the first year, and we spent a lot of time at Mary Bridge Childrens’ Hospital.

I meet my husband about 7 years ago. We now have a family of 5 with my stepdaughter and stepson. My husband adopted Kyle and we live like a “normal” family.

He is a good father and husband. Although we go thru normal trials and tribulations, we are a family and we work together to improve and grow our strength and family.

We will continue to face Kyle’s challenges head on and do everything we can to help him succeed.

We deal with a lot of social and acceptance issues. He was bullied the other day at school for being different. He is very sensitive and it is so hard as a mom to sit by and watch. We talk about things when they come up and I try to show him the bright side of things.

He will need to begin therapy probably this year. He knows he was shaken and almost died and was shaken by a man that lost his temper, but he doesn’t know who he was shaken by and that is his biological father. We are not really ready for this step, but I dont know how and when to do it. My husband has been the other father he has ever known. So we will need some counseling as well to figure out how we handle this situation, as well as how we help him thru his social issues.

We are very lucky to be in a good place in our life, and as a family, we will get thru anything life throws our way.

-Tara

Shining Some Light

2009-09-18T03:53:00.000-07:00

Once I was able to accomplish everyday common activities it was time to take bigger steps toward healing and growing as a person. I did not want to allow what happened to my daughter define who I was. I refused to hear “there is that lady whose husband murdered their baby.” I wanted to hear something more on the lines. “Look what she has been through and look what she has turned it into.”

One of the things that I wanted to do was shine a light on a subject that many just rather ignore rather than face it. That following April I wanted to use Child Abuse Awareness Month as a way to open peoples’ eyes to what was taking place all around them. We were still in the beginning stages with the legal system and preparing for the murder trial so I needed to be extremely careful what I did. I was told that Shaken Baby Syndrome was an extremely touchy subject, and I knew that I could not do anything that got to into detail on that subject. The last thing I wanted to do was jeopardize anything with the trial. Once I was given the okay from the District Attorney’s Office I decided to do go ahead and do a Pinwheels for Prevention Project.

With the help of my family and a group of family friends we placed one Pinwheel for each of the 333 cases of child abuse reported in Las Animas County, Colorado in 2006. Each Pin Wheel had a story behind it. Some worse than others, but all of them represented Children that were subjected to Abuse in one form or another. They were placed on a busy bridge in town where many people could see. I grew up in this small town and I NEVER could have imagined that there were this many cases of abuse there. I wasn’t alone either. Many people didn’t realize how badly child abuse was affecting their community. It was a really big eye opener. The pin wheels remained up the entire month of April and were seen by many. IT was a success!

After doing that project I knew that it opened the eyes of many and touched people’s hearts as well. I knew that people would be much more willing to not look the other way and pretend like child abuse wasn’t happening around them. I walked away from the project with a band aid over my pain. Some where deep down it seemed to make things a little bit easier knowing that I was helping another child from ever feeling the pain, another family from going through this, or another potential situation from being ignored.

Shining a light put my emotions, my feelings, and a piece of my heart all out on the line… I shared my story and in doing so I helped others. It felt so awesome in the end to able to help others, but at the same time help myself. The best thing I ever did was take the chance at helping and making a difference.

-Mandy

Coping Mechanisms

2009-09-17T04:18:00.000-07:00

-Coping mechanisms (Did you ever deal with alcoholism or drug abuse, or another form of harm you put yourself through shortly after?)

After my sons assault, I didn’t deal with any sort of substance abuses like drugs or alcohol. But boy do I love food. Im not sure how much weight I gained, Im know it was a lot during that time frame.

I had the support of my family and friends, and that got me thru. I am a very emotional and sensitive person, I get upset easily and am more of a “the glass is half empty” person. I wallowed in self pity and depression for some time. I didn’t want to get out of bed. I didn’t want to eat… then I wanted to eat everything. I didn’t want to leave the house, I just wanted to pull inward.

I had my son who had survived to take care of, so my focus was on him and being there for him, I guess that was a coping mechanism… I have to cope and function thru this, I have to. I am all he has.

I guess no matter what happens in our lives, we having some form of coping mechanism to get us thru.

-Tara