Last night Nicky started crying in my arms. “I can’t do anything mamma, what am I going to do after I get my diploma?”.
He has only 4 credits left and school is so hard for him, he is not interested in going to College. He told me he would go to culinary school if he’s ever “cured” or if his life will be made simpler by him being able to walk and use his hands normally, which right now is impossible.
I reassured him we would “figure it out”, but as a mom, I’m dealing with a bag of emotions that are hard to describe.
Someone recently was talking to me about the future for Nicky in the aspect of medical care after he’s 21 and… I don’t even know how to respond, so I don’t. The future… yes. I can’t go there. Sorry. Aside the fact that I’ve already gotten my ducks in a row as far as that goes by asking the appropriate questions to the appropriate people, my heart wants to believe and hope Nicky will live to see his 21st birthday, his 30th birthday, his 40th birthday, but my head knows only too well how children and adults with RDEB die all the time. And if I didn’t know that, someone will post it on my wall. “Oh, look! Someone with a child with EB like your son has died!”
Gee, thanks.
No, they did not say that, they just want to “let me know”, as if it’s not something I want to know anyway. Why you may ask? Because, as if I am not already living in a funk, trying to distract myself from this monster I call EB all the time, when I hear of yet another death, watch me become this morose ugly person you don’t want to be around. Yes, Nicky at the time is beating the odds, but time is something he does not have. Time is a luxury. Nicky does not have a mild version of this dratted disease (disorder, condition, call it whatever you like), he is living in everyone’s worst nightmare. He can’t eat, he can’t walk, the moment he moves weird he gets a blister, he has nasty wounds that haven’t healed in more than a decade… I could go on. Time is not on his side. Most of the babies with RDEB that were born when he was have already passed. Adults with RDEB-HS are precious and few. I am not sure I know any at the moment that are over 21. What’s a mom to say to her son who wants to know what he’s going to do with his life?
So, yes, we focus on the present. One day at a time, many days one moment at a time. This is all I can do. The present is all there is. I found out over the years that I cannot function as a human being and as a mom knowing he could die at anytime. I focus on today. I make sure we laugh, we enjoy, we hug and kiss. I make sure he does what he likes to do, that he enjoys today. I make sure he has his pain meds. I make sure things are as easy for him as possible.
What else can I do?
Love & Light,
