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.

Saturday, November 3, 2012

Three Years Since the Death of my Boy

Three years ago, my son Tommy passed away from an Angelman Syndrome related seizure. It has been a difficult journey, one that I would not wish upon anyone, and this wonderful boy is missed by his parents, grandparents, uncles, aunts, cousins, and friends. Our entire family has shed a lot of tears, more than enough to fill gallon size buckets, but we are still standing. We still love one another, and carry on Tommy's spirit with us each and everyday. This weekend is painful, as it is a reminder of that awful night, as no parent ever wants to find their child unresponsive. To sit next to your own flesh and blood, on a hospital gurney as his vacant eyes, look up to the Heavens is the worst place you can ever be. That night is still a flurry of jumbled thoughts, and powerful emotions that still permeate to this day.

Other parents and families across the world, have been down a similar road. Everybody dies, and while the loss of a child is the worst scenario for any parent, I am a content man in many regards. I don't want nor expect any special favors, but I am glad that the anger has abated. That was my prevailing theme for a long time, as I was just furious about how my son could be taken from us, and how at only five years old he was gone. Its not fair, there's no denying that, but it is the reality. The sadness, that baggage that accompanies such a loss, is sometimes heavy but lifting is required. At the same time, I see life through new eyes, a different perspective than before. While I still do complain, it takes a bigger haystack now. Dealing with what used to be difficult, I often laugh at how trivial it was.

There have been tears this past week and in the last few days, and that is alright. I went to Tommy's grave yesterday, and felt sad that another child's burial spot was just established on the grounds of the cemetery. My heart aches for this family, because even though I do not know them personally, I understand their pain. Each of us handles grief differently, but that soul searching, bottom of the barrel hurt that accompanies such a loss, is akin to a tornado ripping your heart from out of your chest. While the cemetery does bring me a sense of peace, with the wind chimes in the tree that overhangs where so many children lie, I just take in the amount of graves that are occupied by so many children.

I wish that everyone could live until one hundred years. That's not up to us of course. Instead, life is full of mysteries. There is joy, pain, and everything in between. Yet even with that sorrow, I have come to the conclusion, that each day is a blessing and should be treated as thus. You never know, when it will be your day, or someone you love's time. Each step on this earth, every breath of oxygen, is not something to be taken for granted. Rather, it is a gift. I do not know what the future brings, but I am thankful to my wife and entire family, along with other folks who have different last names, but are family in every sense of the word. My hopes, my prayers, are for all children with Angelman Syndrome and other conditions that can lead to such a tragedy, to find that cure that so many parents around the world want for their little girl or boy. Their cherished angel. Be sure to love them, and give them an extra hug. Let them know what they mean to you.

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