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.
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