Blog · April 8, 2018

While a Condition May Be Rare, Hope Should Never Be

Having hope sometimes is a gigantic challenge. A challenge so unsourmantable that it leaves you in tears and gives you sleepless nights.

You cry. You scream. You fall asleep in tears. But then you wake up, dust yourself off and move forward, one day at a time. One hour at a time. Focusing on the present becomes imperative.

One of the reasons why I have a hard time being part of support groups in general is because there are often death notices that come through, and there is nothing that destroys me like when I hear of another child with my son’s condition dying.

Two deaths the past couple of days have affected me deeply. Both guys had the same diagnosis as my son. Jonathan Pitre (17) died of an infection, and my dear sweet friend James Dunn (23) died of cancer. I started talking to James after Nicky had his skin grafts and he was the sweetest boy ever. It hurts me to know he’s no longer with us.

My Nicky, at 21, is, knock on wood, cancer-free at the moment, and his infections are under control thanks to many things, including the cream from the clinical trial and (I hope) due to my concoction that reduces the chances of cancer and helps healing. Still. I know something can happen suddenly, and it hurts. I don’t know what I would do without Nicky. My life would completely change, and not for the better.

Children and Adults with EB can die from a variety of reasons, all related to the condition. The EB per se does not kill, it’s the consequences that do. Over the years the causes of death have been so varied it’s hard for me to pinpoint something “I should be on the lookout for” to make sure that does not happen to Nicky. Infections, Cancer, Organ Failure (Kidney, Liver, Heart), Pneumonia and more, the list is long. The two main things I keep a close eye on are Infections and Cancer. This is why for us making sure his wounds heal is imperative.

The truth is, the worrying never stops, even when he is doing well. I just try not to think about it.  Every day I make sure to get a laugh out of him and when I pass by his computer while he plays and I give him a kiss on his cheek. Even though we have some hard days, I can’t give up on my hero. He is the epitome of strength, determination and courage.

I find it interesting that even on days where I am absolutely exhausted or tired or sick, I always find energy from deep inside of me when my son needs me. I guess that’s what unconditional love is all about. 

Every fiber of my being has been tested by Epidermolysis Bullosa.  Yet, nothing will stop me from providing my handsome, caring, loving adult son with the happy, healthy, productive life he deserves alongside trying to maintain a calm, stable, loving environment for the entire family, ensure my relationship with my husband remains intact and find a precious few moments for myself.

I will continue to have Hope. Because I don’t want to live in a world without it.

Love and Light,