Blog · October 27, 2016

Epidermolysis Bullosa is not a Life Choice. It’s Real & it’s Hard.

Last night, during a bandage change, I barely touched Nicky’s feet and he yelled in pain. I wasn’t touching a wound, mind you, I was simply “gently” feeling his skin.

His feet nowadays are mostly healed, and they have been healed for sometime, they really look beautiful all in all, so I was a little perturbed. In truth, for the past several months – or years – Nicky won’t let me touch his feet at all. If there is a wound or a scab to clean or anything else he insists on cleaning it himself. I don’t mind at all, yes, please do it, ha ha. I asked him what is the matter with his feet though, and he told me they are “incredibly” sensitive. Just touching them is painful. Often he gets a blister just transferring when he puts some weight on it. Another area on his body is like this, which is his g-tube area and the area that goes from the knee to the foot, along the bone line. There is an artery there and it’s incredibly painful to touch.

14711401_10154679446402174_1756641380632431854_oHis feet though, is something strange. I could understand the g-tube and the leg being extra sensitive, but his feet were an area that, for some reason, were pretty darn tough when he was little. I understand that the skin there is different, tougher in general, but I suppose the relentless damage over the years has taken its toll. This is why RDEB is degenerative. It gets worse with age.

It’s been almost 5 years since Nicky could walk. He will be 20 years old next month. Despite all of this, I must say he’s looking as wound free as I can possibly help him with, but this stability is not equivalent to him being cured nor can promise me that tomorrow things might be different. It’s simply a promise of a continued equilibrium. Today he’s OK and that’s all I can hope for.

Many of the things I do to keep Nicky healthy are a kind of delicate card castle. If one card slips, the whole structure will come tumbling down — one bad virus or infection could threaten his life. But even the medicines I use to help keep his pain and other symptoms in check have a number of side effects that contribute to possible disaster. Some of the medicines he takes could affect his heart and other internal organs. These are tradeoffs. And I do not take them lightly.

Sometimes, when I sit down and think about it, I forget that the kind of stuff we deal with on a daily basis isn’t normal for most people. I forget, because after 20 years, they are normal for us, and even though I have a healthy child to remind me of the opposite, I choose to just live my day without comparing.

The one thought that haunts me, however, is the fact that I’ve accepted the fact that I am extremely attached to a child who will most likely die before me. I am terrified about my son’s future. I feel increasingly isolated from most people who either ignore or refuse to understand what it’s like to be in my shoes. The few that do are incredibly important to me.

It’s a privilege to be in the position to care for this amazing son of mine, who is so fragile and yet so strong, to watch what he has done to all of us, and how much he has taught us about family, about love, about compassion. He is so fragile in so many ways. But also, he is the opposite of fragile.

He’s the strongest person I know.

Love & Light,