Fighting EB Every Day is our “Normal”

As Nicky’s 20th Birthday came and went, I am reminded of so many moments in his life where things were dicey. When I really thought he wasn’t going to make it to his 8th birthday, let alone reach his twenties.

When he was 5 years old, in fact, he took a bad fall, which denuded both his legs of skin from his knee to the ankle. His knees and ankles were already non-healing areas by then. After 2 years of trying everything under the sun to get his legs to heal, I was at my wit’s end. Not only his health was spiraling out of control as his infections were at an all time high, his spirits were damped. He was no longer my happy-go-lucky little kid, he was morose. Always. He no longer cared about school, his little baby brother, nothing. I honestly thought “This is it”.

nicky20Parenting a child with a life-threatening condition teaches you that life is precious. Life needs to be lived one day at a time. Life needs positivity to move forward. Trying to keep my son happy and hopeful was a monumental task. Even back then I knew that part of my daily routine was to find something to laugh about, something to make us smile and to keep us vibrant and hopeful for the future. If I learned to smile despite the yearning to cry, it’s because my new “normal” was to make HIM smile.

But his mental health was only a piece of the puzzle. A big one, for sure, but I had to do something about those legs. Other parts of his body were worrisome, but his legs at the time took center stage. They were really, really, really, really bad.

Changing bandages one day while suffering from lack of sleep because of my new 3-month old baby kept me at a zombie level, I freaked out in a big way. I am not proud of this by any means, but it affected change in Nicky’s life that we’re still benefitting to this day.

I had been successful in getting a little area on his leg to finally heal, and on this particular day I saw that all my efforts had been for naught. Nicky had itched that area right back into an open wound. I was hysterical. I had to stop him from itching himself to death. Literally. But, how? So that day, out of pure desperation, I wrapped his leg from knee to ankle with 3 rolls of Webril, topped with 3 rolls of Kerlix. For those familiar with these products, you can just imagine how thick that leg was at that point. But… guess what? It worked. WIthin 4 months both legs were completely healed.

Even til this day, even though his legs are beautiful, I still wrap with at least one whole roll of Webril for padding, to keep him from making wounds to begin with. Padding has become our “normal”, and Nicky will even tell me to pad an area more if he feels it might be extra fragile.

We’re a team through and through.

Fighting EB every day is our normal. For the past 20 years and for the next.

Love & Light,

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