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, June 19, 2011

An Ode to Father's: Those Who Have Special Needs Children and Those Who've Lost One

Today is father's day, and this is usually an occasion marked with perhaps a card, cigar, or a ridiculous looking tie that will never be worn. Being a Dad is the world's greatest job, but its not always the easiest, especially to father's that have a special needs child, or have suffered the loss of one of their kiddos. For those with children who have it a bit more difficult than others, my heart goes out to you. Too often we as father's focus on "what's wrong with our children," along with being angry and frustrated that we can't help our children, or explain to others easily that our boys or girls aren't going to make the baseball team. I've been there, and its difficult on the male ego, which means obviously a whole host of other challenges that go with it. Yet I hope that with a step back, you can avoid some of the mistakes I made, and realize that there's so much more that a special needs child is capable of, and that you have to be "a rock" for your family. Its not easy, life isn't, but it is necessary.

All of the dreams for your son or daughter are crushed, when you receive "the news," and not the good one either. Your hopes for teaching them to fish, hunt, play a game of football, or just get into cars are thrown out the window. Until my last day of life, I will regret not focusing on what Tommy could do, and letting this period of difficulty extend far too long. When he was born, I remember thinking " I can't wait to teach him how to go fishing." Then, when I heard of his Angelman Syndrome diagnosis, I flipped out and left the doctors office in an absolute rage. A homeless man begging for money, got to be on the receiving end, as I yelled at him "How dare you bother me now? Why don't you do something such as be a real man, and get a job!!"

I feel bad for that man, who picked the wrong day to ask me for money. While I don't think panhandling is acceptable, my response was not, and if I ever see him again I will apologize and purchase him a meal. Losing a child causes similar pain for us fathers, who don't wish to admit crying, and try to soldier on stone faced in grim circumstances. We try to put on our "game face," but behind the eyes that seem not to betray us, there is a pain, and rage fueled with suffering. It is so "against the grain" for us to bury our children, rather its supposed to be the "other way." Yet that's not always how it works, and there's so much in our lives that is out of our control, whether we want to admit it or not. Stoicism is a fine value, but sometimes you have to admit to the pain, that can drown you in self destructive behavior. I know this firsthand, because after my son's passing, I drove around town at high rates of speed, not caring for the welfare of others or myself. It was selfish and irresponsible behavior, and showed a lack of empathy for my fellow human beings.

Humanity. Do you think you are alone with a special needs child, or if you've been a father's who lost one? Nope, not at all. There are many of us out here. This is not a traditional father's day message, but remember that you and I both are not perfect. We can only do the best that we can, and if I had to do it over again, of which I have no choice, I would have focused more on the joys of a child with special needs rather than constantly worrying about the ramifications, the medical trips, the strain of stressing out about seizures and other pressures. Today is an important day as fathers, because we do fulfill a vital role in society, as well as being members of families and there for children who may give us that "title." Its a job alright, but there's no better one, even though the pay isn't so great :).