I am a nurse every single day for my son and I don’t enjoy it one tiny little bit. There are days where EB just overwhelms me. Still. One would think that after nearly 22 years it would just get easier, but it’s just draining and relentless. Nicky’s at that age now where he should be living on his own or would soon, perhaps graduating from college, but he is everything but independent and will probably never be. EB takes a toll on everything and everyone. Just recently between a persistent corneal abrasion that lasted weeks and severe stomach cramps which made his existence a miserable day to day ordeal, I was nearly suicidal, and I am not even overstating it. I guess people might think EB goes away or gets better. It doesn’t. It gets worse. I think at this point I got Nicky pretty much “stable”, his wounds areRead More →