Blog · May 7, 2015

EB Sucks

I updated my Caringbridge Blog today (here’s the link–> and I also posted a photo on my Butterfly Child Book Facebook Page and I talk about the pain and suffering that Nicky endures. It’s not easy. EB sucks.

It’s been two years now since I had to start giving Nicky pain meds basically 24/7 and to me it’s a shock he didn’t need them all day before. He always needed them for bandage changes, but never at any other time. I always asked him what was his pain threshold, and as I write in the book, sometimes I am convinced his body is reacting differently about pain than a regular person, simply because his body is so used to it and has dealt with it since birth. Even when his body wasn’t so ravaged, if I had had the wounds he had, I would have been in hell. Now? I don’t know how he’s even able to play videogames. It’s not only the pain from the wounds, it’s the constipation, the allergies, the swallowing… the list goes on and on.

I was a little afraid to post these photos this morning, but I will go ahead and post them now on the blog… so nobody can report them, like they can on Facebook. I own this domain and I have rights.

Make no mistake, I take no joy in posting these, but there is no way around it. EB just needs to be seen.

These photos were taken in late 1999 after Nicky had a surgery on his left hand. Anyone that feels these kids aren’t heroes, I don’t know who their heroes are… Rest assured, the decision to have the surgery done was not an easy one, but as Nicky will tell you himself, he’s enormously grateful I cared about him having hands, so that thought alone puts me at ease. I was vilified over and over again for “doing this to him”, but at the end of the day, we all have our priorities and do things the way we see fit, since this is our life, and our children. It’s nice to know that in hindsight I did the right thing, since Nicky thanked me many times.



His hand at this point wasn’t exactly 100% healed, as you can tell. But the fingers were nicely separated and straight, which was exactly what we wanted. Keeping them wrapped helped the process of keeping the progress intact and considerably slowing down the webbing/contractures.

At times it seems so cruel I had to do this to my child to extend quality of life, but with EB, everything pretty much sucks. Making decisions about surgeries sucks, changing bandages sucks, popping blisters sucks, fixing his night-time g-tube feedings sucks, tending to wounds sucks, seeing your baby in pain sucks, it all sucks. Sometimes I would love for Nicky to have one day, one single day without EB. What he said he would do on such day? Eat Pizza.

Pizza dreams for my boy…

Love and Light,