Life with EB

I was thinking this morning about my conversation with Nicky that I had a few years ago while we were changing bandages… I told him how hard it was to wrap his wrist and that if only he could try to straighten it once a day it would not be so ‘bent’ right now. I know how little PT he needs each day for things not to go to the point of no return and he started to cry.
When he cries he can’t speak, so he wrote down for me all his feelings.
The bottom line was that he did not want me to give up on him if he did not want to do something that brought him pain. That just about KILLED me.
“Giving up on you” I told him “As if that it’s ever going to happen”?

Life with EB. It sucks so bad… It’s hard to be part nurse, part mom, part cheerleader, part picking my battles, but giving up is not in my DNA. One day at a time is all I can do. I can’t even think about tomorrow.

Before EB came in my life, I was a fighter! I’ve always been a fighter. I had various challenges which took my breath away. After my stillborn baby and my miscarriage it would have been so easy to give up, but I never did. With EB, however, it’s a whole other ballgame. It’s so incredibly overwhelming! By the time Nicky was 1 year old I realized I needed the help of my family and that’s why I ended up in Italy for most of 1998 when Nicky was between 1 and 2 years old. What that period meant to me is that my parents helped me realize that I was the best person for him, that God chose me to help Nicky.  He specifically chose me.  Once I realized that I gained a strength that was beyond unreal.

Through the years and the many trials we faced,  I felt honored and humbled that I was the one Nicky could rely on. I got to be with him through every step of the way.  I don’t and never will take simple skills for granted.  I will never forget how hard he worked to achieve the smallest goal. I know much of his EB is out of my control, but that won’t stop me from trying my best to help him each and every day.

We all have a purpose. Some people are the the roses, and some people are the forget-me-nots, but everyone has a purpose. There is nobody and nothing on earth who doesn’t have a path or a purpose. An innate destiny. 

I realize that in life we are programmed to look to the future. We have dreams of things we’d like to do and see. But Nicky reminds me every day about the need to notice the little things as we live each day. To slow down and pay attention. This helps me in many ways because at times I truly feel like I am battling an impossibly hard, neverending losing battle. Then I see how Nicky wakes up each day and takes life on. He truly inspires me to do the impossible for him, and for that I thank the stars, the almighty, the love of my family, but more than anything I thank Nicky for being the bravest person I’ve ever met.

So, when you ask how he’s doing and I tell you he’s doing ok, it’s because I really think that despite it all, his psyche is still hanging in there, still “good” and full of life. Besides… I don’t think you really want to hear how loud he screams during bandage changes. Or how worried he gets that he won’t be able to swallow and might need another dilatation. Or that he’s afraid hid g-tube button will leak again and would require another surgery to fix it. He marches on and lives one day at a time and for that I have immense respect for him

I know that some people in the disabled community say that they are not here to be a learning opportunity for others. They even resent such notion. But I would argue that we are all learning opportunities for others. All the time. We are all examples for others in the beginning of their journey by our words, our actions and the way we treat each others. As a parent, I feel is my responsibility to help everyone learn how no matter your or your child’s diagnosis, we are all unique in our own ways and we have to love one another. 

I also wanted to say that giving of oneself takes energy and commitment. Receiving, on the other hand, takes a big ol’ bucket of get-over-yourself; you’ve got to swallow your pride sometimes, and just be grateful when somebody throws you a rope. I am very thankful of everyone who even spent a moment not only donating for Nicky’s Medical Fund, but even just reading this blog. I will keep writing, not only because it may help someone else, but because it helps me as well.

Love & Light,