Tommy Ethan Ross was the best son that a father could ever have, and I wish he could still give me one of his famous hugs. He was always smiling and laughing, and even though he never spoke an actual word, he touched a lot of people in his five years. At just a few months old, he was diagnosed with Angelman Syndrome, which is a deletion of chromosome 15.(http://www.angelman.org) It was devastating news, and we learned that he was intellectually disabled, would have sleep disturbances, severe delays, and most likely seizures.His seizures started at age 2, and led to him spending time at our hospital's Intensive Care Unit. Thankfully he was able to overcome these with Keppra medicine, along with Valium for emergency use. Tommy had three awesome years of schooling, and a lot of credit goes to Fairfax County Public Schools for believing in him, and giving him every opportunity to learn tasks such as eating and walking. A couple of months ago, Tommy learned how to walk in a pool, which was truly one of the most inspirational moments of my entire life. In the past weeks, he was making teriffic strides walking unassisted in our living room. He always had that smile, and even though he would fall down, he never gave up.
On 11/04/2009 Tommy passed away from seizure activity/cardiac arrest while taking a nap in the afternoon. It's so distressing to find your child like this, and that day is going to be firmly entrenched in my brainstem for the rest of my life. Yet I'm willing to live with that, because I know he's not suffering, and I'm truly blown away by how many people Tommy inspired. He made our family stronger, and while there are more than enough tears to start a small stream, there have been plenty of smiles and laughs as well. Tommy had the biggest family in the world, as while we were his parents, and he had devoted grandparents and wonderful uncles, he also had folks at the Angelman Syndrome Foundation, Church, Schools, and neighborhood residents rooting for him every step of the way.
Against all odds, Tommy was able to achieve more than the majority of us ever will. As I type this I miss him dearly, but would be willing to do it all over again, even with this ride ending the way it did. In the next couple of weeks, I hope to submit pieces on Angelman Syndrome, the need to improve research for seizure control, and how to deal with the loss of a child, or those who are going through a similar ordeal. I'm not the most religious person in the world, but I do like the phrase "the crosses we bear." How true that is, and I hope you never have to deal with this type of experience in your life. Yet with how vulnerable with are as humans, I hope you'll consider hugging your children, and telling them how much you love them.
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