What is Shaken Baby Syndrome?

Each year in the United States alone, medical treatment is sought for an estimated 1,400-1,600 babies who have been shaken. Don’t let your child become just another statistic! Tell everyone who cares for your child “Never shake a baby!”

Wednesday, December 8, 2010

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





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.

Friday, November 5, 2010

"I Get to Witness Miracles Everyday"

***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.

Monday, October 11, 2010

Shaun Dean's Story





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

Sunday, October 10, 2010

The Last Day to Order your shirt



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

Thursday, September 30, 2010

And the Winner IS.....







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

Monday, September 13, 2010

~The Fire Thrown and Stones Cast~


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.

Thursday, September 9, 2010

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





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")

Tuesday, September 7, 2010

Important Announcement ~ Please take action today!


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

Tuesday, August 31, 2010

Brand NEW Shaken Baby Syndrome Awareness T-Shirts!



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

Tuesday, August 17, 2010

~Miss Lillyanna Renee~




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

Thursday, August 12, 2010

5th Annual Shaken Baby Syndrome Candlelight Vigil





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.





My Contribution







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

Wednesday, August 11, 2010

Little Miss Evalee Diane





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!

Tuesday, August 3, 2010

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

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

Wednesday, July 28, 2010

Thomas "Chase" Sullivan SBS Survivor




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