Blog · November 7, 2019

Epidermolysis Bullosa is Hard

I just realized it’s been a while since I last posted a blog. I am not sure why that is, only that at times my life is not exactly “busier”, just dispassionate about things that I know make me feel better. I do have an excuse, however, I did go to my Uncle Tony’s funeral in Washington DC this past month, which took my mindset to a completely different level – a mindset that took me a couple of weeks to put in its honored place.

I loved my uncle. I did. He actually died at the end of last year and was cremated waiting for a spot at Arlington to become available. He was one of those individuals who seemed all rough and tough on the outside but was as soft as a marshmallow inside. He was not someone that was easy to get along with, but all my life I’ve dealt with people like him, so it wasn’t hard for me to “get him”. My aunt told me that he idolized me and I was pretty astonished by her statement. As a matter of fact many of my cousins and their families were particularly complimentary about my sacrifices for my son and my advocacy on his behalf. I don’t know why that caught me by surprise, since I often get really nice emails or messages, but they are mostly from strangers.

Because I was only 30 when Alex was stillborn at full term, 32 when Nicky was born with EB, experienced near perfect pregnancies, and have no family history of fetal or genetic disorders, everyone in my family has since felt very lucky they did not suffer the same outcome. This is why not only I didn’t have genetic testing done, but neither did they. Then again, EB is not something they even look for in general. The knowledge that this isn’t our fault doesn’t ease our pain, but it makes it easier to live with. 

This blog is up mostly because I want to explain so many things to strangers but also, I guess, family – that Nicky almost died when he was born, how much work it is every day to keep his skin healthy, how I was horrified at the thought of sticking a needle into my baby when he was born, but the alternative was a blister that would fill with fluid, spread and potentially cause a huge festering wound, and most importantly, how he is just another child.

Okay, okay. He is nearly 23. He is not a child. But no matter how old he is, he will always be MY child.

If I had to pick ONE thing over the years that has upset me the most is when I hear ridiculous comments about “letting him” get hurt. These people don’t even know me, many of them have EB as well, which hurts even more.
I am the last person to hold back my son, I have never held back my son. It really hurts to be judged so harshly by people that have no idea what Nicky’s daily life entails. When I talk about my son, I don’t say he can’t do things because I don’t want him to; I want him to, he wants to! I say he can’t because he can’t. I constantly encourage him and support him. I would like nothing better than Nicky to be able to do everything he wants, he’s the one that thinks I am crazy to suggest he do things!
The truth is that every EB patient is different. The fact that he can’t walk or do things is his reality, which nobody can judge, nor dismiss. He simply can’t do things. He can’t open the fridge, he can’t dress himself, I tell him to dress himself, I tell him to go open the fridge, he just physically can’t do it. He laughs and tells me “really mamma”?

I understand that EB affects patients differently. Some are much more able than others. But they don’t get an award for being able to do more, just like it’s no badge of honor to be more affected. Everyone is simply doing their best to survive, and shame on anyone who doubts someone’s abilities, their choice of treatment for themselves or their child, or their level of care or dedication. To be honest, not being a television network or a politician, I’m afraid I don’t respond to preference polls. I do what’s best for my son. Not what’s best for someone else. Period.

In these past 23 years I’ve cried myself to sleep more times than I can count, after holding back tears more times than I care to remember. Doing what’s best for your child and being in this position to begin with isn’t always something that people can understand. In a way, I feel like I am a soldier in a battle that is not mine to fight, but I am giving it everything I’ve got because my child is the only thing that matters.

To all EB parents out there, remember this: You are strong, you are courageous, and you are brave. You are doing an amazing job navigating a path that you never asked to be on.

Love & Light,