What Do You Do?

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What do you do when your child with EB becomes a teenager with EB and starts asking you the really hard questions about life?

When my son was small I could gloss over the answers with a positive saying or a humorous comment. Not so as he becomes a young man and wants real answers to real questions.

Matt’s 14th Birthday

What do you say to your teenager with EB when he asks more than once what I would think if he joined the middle school football team. When he was younger a “maybe someday” would rest his soul but not anymore. The first few times I kind of changed the subject trying to buy some time for myself. Then I am finally honest and tell him that he would not make it through one practice because of the friction from the pads and all of the running. This while trying to minimize the excitement I see in his eyes because he really seems to think that playing is a possibility. He looks at me and realizes he finally got an honest answer and says “I know I can’t play but I just wanted to hear it from you”. I cry inside but manage to smile at him.

What do you do when after your son’s orientation for middle school the football coach is standing behind us and asks if your son wants to play? My son was in seventh grade and almost six foot tall. My wife and I talk to the coach and tell him about my sons EB. We listen to the coach talk about my son being an assistant coach, “his right hand man”. The excitement builds probably even more for me then my son. He may actually becoming a real part of something, being accepted finally!

I go to pick him up at the first home football game. I see my son in the distance holding the down markers, this is all he ever does for the season. Not that he minds me loves it. What I did realize is that the coach was just blowing smoke at our first talk and the reality is my son is included but only at the farthest edge and this makes me scream inside. I thought it would be different this time. A new start in a new school but the reality of my son being on the outside is again in front of me.

My son has Dystrophic EB according to several biopsies done in his first couple years of life. I never really felt knowing which strain or sub strain would make any difference. He has EB, there is no cure and that is all the reality I needed to know. He mainly gets blisters on his hands, feet and thighs, some deep, some not. He is not severe as some but it still leaves him with a very painful, very unsure and very not normal life.

What do you say when your teenage son with EB asks you if he will ever have girlfriend? What can you say when he says he will probably never get married and can he live at home as long as he wants to? I ask why wouldn’t he get married and he says “you know why”. I am still trying to find the right answer for these questions. He recently went to a teenage group at a church and a man was giving a talk to the kids. He said the man had what looked like a hole in his head and a scar going down his face. The man was talking about his wife and my son said this man gave him hope because if this man found someone maybe he could to. Is this really what my beautiful boy sees himself as? He also already thinks that if he did ever get married he would adopt a child so his child will not have EB like him.

These are thoughts much too serious for a boy so young to be thinking about, much too serious to even be laid on a young boys heart and mind. The teenage years are hard enough to go through when you are “normal” let alone with a horrible disease like EB.

Yet with all the despair, sadness, worries and abject fear I feel for my son’s future, the son that I fear for brings me hope, a kind word and always laughter. I marvel at his courage, perseverance and strength. Instead of teaching him, he teaches me more. There may never be right answers for these hard questions but maybe just trying to answer and being a shoulder to cry on is answer enough.

Robert Turowski

Bob Turowski lives near Cleveland, Ohio with a wife and two children. Younger son has EB and older daughter is EB free.

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