Interested in a cure for seizures? Here's where you can immediately help.

Feel free to share any of these posts. There are no copyrights on any of them, they are for anyone, anyplace, anytime for whatever reason. All of my love, from a man who just simply misses his son, and believes in the decency of people around the world,

**To reach the author of this blog Mike, the best email account is a silly one, but goes right to my phone. Technology is so cool. Its Thank you for reading this blog, and its been such a good project, in that it has helped others and me as well. May you all live life to the fullest, we have no idea when it shall be our last "dance."

With much love, I am proud of the Angelman Syndrome Foundation. If you can help them, and families with this condition, please consider donating to them at They are on Charity Navigator, and have done a phenomenal job over the years, on the awareness and research side.

Sunday, September 25, 2011

Little Run, Waples Mill ES, and Tommy : Angels Help an Angel and Much More

Tommy lived with us for five years, and he certainly did a good amount, in the short time he spent on Earth. It was so devastating, right to the core, to find out that such a beautiful young boy had a condition called Angelman Syndrome. We were told 'point blank', that there was a good chance that Tommy would never walk. As if it doesn't hurt enough to hear about your child having severe intellectual disabilities, not being able to speak to you, having regular seizure activity, it was perhaps the hardest to think of him not having mobility. That just really caused a lot of pain, tears, frustration, and angst over his future. Yet "angels" stepped in, and these were the Administrators, Administrative Assistants, Teachers, and specialists that worked at Tommy's school. Who knew angels worked at a school, because as a young boy, I was convinced that it was only the friends of the devil himself whom tormented me with my free admission to the Principal's office on a daily basis. Looking back, I realize it was my fault completely, but I just had no idea of the impact a school could have on my son and also our family.

Until Tommy went to Little Run Elementary, located in a beautiful neighborhood just east of Fairfax City, VA, I thought school was where he would be "institutionalized," perhaps maybe get a chance to see other children. It was much more than that, as Tommy loved the bus that came each day, and the kind drivers and assistants who saw him safely to and from Little Run and Waples Mill Elementary later on. We didn't have a lot of hope, and I now realize that our family, although we loved Tommy, was in a cloud of constant depression that just seemed to linger until he went to school. There we saw people who cared about him, about us, and greatly wanted him to succeed. It was the complete opposite of what I thought, and I now admit that I was jaded and completely incorrect about the importance of special education to not only the child, but also the parents, grandparents, friends, and even neighbors.

Teachers taught Tommy "cause and effect," and he loved these lessons. There was one teacher, whom I am smiling of while typing this, who comes across as the most compassionate drill instructor from Parris Island of the United States Marines Corps. She promised us that "Tommy would walk, you shall see." I was skeptical at the time, thinking "that would be great, but I'm not going to bet the house at Vegas on this happening." She worked with Tommy everyday, along with kind occupational, speech, and physical therapists who didn't give up on him, or us for that matter. They taught us how to become involved, and this made us feel better about Tommy's chances, along with providing us an opportunity to lift this cloud of depression that just seemed to hang around. We felt a lot better, and the school became a part of our lives, as we enjoyed the home visits and interactions there as well. The smiles and laughter each visit, whether at our house or at the school, are proof of this. It cannot be put into a bottle, but I'm still smiling and laughing about some of Tommy's adventures, and how these teachers and specialists, were so intertwined in our lives. They still are, and I am thankful for them.

Later on Tommy went to Waples Mill Elementary School. He was loved at this Fairfax County Public School as well, and it was a similar story over there. At first, our family was a bit concerned about the distance, but that abated as Tommy got stronger, with his health and started to walk in the pool that previous summer. I miss Tommy while writing this, yet I am happy that he did as that teacher said, " he will walk, you shall see." She wasn't kidding, as her hard work and dedication to Tommy shall never be forgotten, nor shall all of the kindness and love that everyone who was part of Tommy's life. His last week of life, before a seizure took him, he walked across our living room. That smile said it all. He did it without assistance, standing strong, and refusing to give up. God bless you Tommy, we miss you, but are thankful for you and all of the kind folks we've met along the way.

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