Blog · April 26, 2019

One Day without EB

This year, so far, has been horrible. I try to do fun things and distract myself as much as I can, but the undeniable truth is there, always there. Nicky is in pain. Always.

At this point we’re waiting for a sleuth of appointments with various specialists (GI, Dermatologist, hydrotherapy etc) and hopefully as soon as possible, a surgery for a new ‘hole’, as the old g-tube hole is absolutely 1 million percent hopeless. It bleeds, and it doesn’t want to heal or close on its own. This has been going on since early January, so seeing Nicky dealing with this for 4 months, 2 hospitalizations and 2 surgeries later, I honestly feel as I want to just disappear. I am so tired. I want to hide myself in a little corner and cry. But, I cannot. I need to be strong for Nicky, and when he’s with his dad I can breathe a little and I feel guilty about that because the person who needs the break never gets one.

My greatest wish is for Nicky to have even just one day, one single day of him experiencing life without EB. A day without bandages, a day without pain. ONE DAY.
I know there are many people working on this and trials out there, and the truth is that every form of EB is so different that most of the trials only cure certain kids under certain conditions, so they are not worth anything to us. It’s a tough reality to swallow.

In the meantime, EB takes a toll on Nicky. It never stops, it never leaves. Even before all these gtube issues Nicky wasn’t doing that fantastic. All his “numbers” are normally pretty good, but there is always something lurking in the dark. There is never a break, there will always be something else, there will always be a feeling that we won’t know how to deal with the next crisis, and the reality that we cannot stop the nightmare from continuing. It will never end, Nicky may never wake up one day and be EB free. Never.

Our life revolves around pharmacies, hospitals, Doctors and bandage changes. But life goes on, even if our road is a shadowed valley instead of a glorious sunny beach. There are a lot of people in that valley, we aren’t alone. Our family strives each day to celebrate life for what it is and what it looks like, instead of dwelling on what it isn’t.

On a day to day basis, it is the bravery of my son that gives me the energy to keep going. But I would like if I said things have been especially hard lately. I would love for him to have a day without pain, because lately he just starts crying for no other reason that he’s so upset of all he goes through.

I strive to be logical and in control. Drama and tantrums serve no purpose. I will cry because I am sad, but I will not go crazy. I need to be strong for Nicky. I may feel numb at times though. It took a long time to heal the rawness inside.  I needed to be strong or Nicky to help him survive and thrive. I had to keep my eyes, ears and mind open to do that. 

Giving up is not in our vocabulary.

Love & Light,