Blog · October 19, 2015

Confession of an EB mom

epidermolysis_bullosa_awareness-685400This morning I hated being an EB mom. “Hated” is such a mild word to describe it too.

Nicky woke up in a lot of pain. He tried to pull something off of him, ripping skin off and causing a wound that was already bad to increase in size and bleed profusely.

As he was crying in pain I had to change all the bandages on his bottom and upper thighs which were green, apply healing ointments, cover and wrap as much as I could. Thank God I had morphine to give him. He is sitting peacefully playing his game now, and I can’t get over it. I am still shaking.

I then came across an article from a special need mom and something she said struck me as something I could not relate to at all. She said:”I would not change this journey for the world, as it has made me stronger, wiser and a more courageous person than I ever thought I could be.”

Sure, having Nicky has made me stronger, wiser and more courageous than I ever thought I could be, but I would be lying through my teeth if I stated that “I would not change this journey for the world”.

I don’t know, maybe her son is not in so much pain, I have no idea what condition he has, but I can tell you right now, I don’t know a single EB mom who wouldn’t sell her soul to take their child’s pain away, and would surely give up any strength, wisdom and courage  gained through their journey to see that happen.

Yet, here we are. We cannot choose our battles. So many things in our lives are completely out of our control. This experience has indeed made me a better parent and advocate; I learned more about life than I ever could have imagined. The inner strength my son has shown in spite of incredible obstacles inspires me every day.

But don’t think for a moment that I wouldn’t trade everything for him not to be in pain. Because I would.

Love and Light,