- Posted December 2, 2013 by
This iReport is part of an assignment:
CNN Fit Nation: 2014 Triathlon Challenge
Dravet Syndrome dad has to be around and fit enough to care for son
Five years ago my first son, Haiden, was born. Haiden has Dravet Syndrome, the same condition as Charlotte Figi who was featured in the documentary Weed. Haiden has over 100 seizures each day, and it has slowed his developmental progress to the point where he is stuck as a 2 year old developmentally. Haiden is going to need lifelong care, his condition is caused by a genetic mutation, and it can't be fixed. I need to be around long enough to take care of him. Not only do I need to be alive, I also need to be fit. He is now five and I recently noticed that it is getting harder to move him around and control him when I have to. For a five year old that is developmentally two, you have to move him when he is in danger that a normal two year old could not get into. When he tries to run into the street, of fights because he doesn't want to leave the house, or when he is trying to grab sharp objects in the kitchen. He is going to keep getting bigger, and stronger, and lately I've just been getting fatter and weaker. There will come a point where I am no longer able to exercise the gentle but firm physical control required to care for a child with these kinds of special needs.
I just weighed myself today and am ashamed to say that I am 273 pounds, my heaviest ever. My family has a very robust history of heart disease. If I don't do something, and get back in shape my son is destined to be put in a hospital or group care setting. He needs me, and needs to be with his family that loves him.
Every time I have lost significant weight it was always in pursuit of a goal, and it always came under circumstances that I can't replicate now. In wrestling we had practices every day, I can't wrestle by myself. Marine Corps boot camp was a unique experience, and it ended. I've always dreamed of doing a triathalon, I just love the name of events like Ironman. But I've never been in the position to even consider doing it. I believe that having the goal of this 2014 Triathlon Challenge can motivate me to make the changes needed. I'll have the kind of regular interactions that will keep me on track. Gollowing the triathlon it will be easier for me to keep up the exercise regiment because I can replicate the training and race goal anywhere. Perhaps move on to bigger more challenging races. But I need help getting through the first one.
My son is going to have enough challenges in life, and I hope that with the help of Fit Nation that growing up with out his father will not be one of them. I hope that he will always have his father here to take care of him, help him grow, and keep him surrounded by family and friends.