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.

Thursday, November 1, 2012

A Nickel Spinning at the Restaurant

A nickel spinning. That five cents with Jefferson's head prominently featured on the front, and the back his beautiful Monticello estate. In a world that pays with plastic, this metallic piece is hard to come by. Yet there it was spinning in front of me at a restaurant, as I reached for my wallet, and it dropped out on the counter. Five cents doesn't buy you anything, but five good years of life are a blessing. Three years ago our boy Tommy, succumbed to an Angelman Syndrome related seizure, and he is missed every single day. Seeing his clothes, looking at his pictures, or even hearing a song that he used to bounce around to, it cuts like a knife.

It was so painful prior to this nickel spinning, in a toy store, as the song "When You Wish Upon a Lucky Star" played. Last night his younger brother and I watched Pinocchio, and I couldn't help but think, Angelman Syndrome used to be called "Happy Puppet Syndrome." That is of course derogatory now, but in many ways, Tommy was the happiest human being I have ever seen. He just lived life to the fullest, whether it was riding a slide at the pumpkin patch, or playing with Christmas paper. I wish that as a human being, I could be like him, or other children with Angelman Syndrome. They are the best people I've ever met, innocent souls who do not do anything to ever harm another person. Their world is one with laughter, smiles, gusto, and a determination that is hard to put into words.

For five years we were lucky to have Tommy. Even with his passing, and the great sadness that has followed, I still believe in the goodness of people. My faith has been tested, to a degree that I wish upon no one, but I must carry on for his younger brother's sake, along with my family's. That spinning nickel so personified what it feels like, to go through the pain of losing a child. Three years out, and while the anger has subsided, that pang of grief can turn on at the drop of a hat. Anniversary dates such as Tommy's birthday, November 4th, and Christmas are particularly brutal. Sometimes he feels so close to me, in the essence of my soul, and yet at other times he's a distant memory. Yet he is always there, in my heart, and until my last breath I will never stop grieving.

I don't know what lies in the road ahead, other than there are no guarantees. Each and everyday alive is a blessing, and I'm grateful for each and everyone, whether its full of joy or in deep sorrow. It has been a learning experience in many regards, and I see life with a new set of lenses, which can be both good or counterproductive. Yet there are so many, that are among us, who have walked this trail. They have heavy hearts, pain that will never go away, and to parents who have just gone through such a tragedy, my prayers are with you always. You will never be the same. That is a given. Yet much like that spinning nickel, this one with the date of 2003 when Tommy was in the womb, this world is full of possibilities and challenges that have yet to be completed.

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