Blog · September 3, 2014


Nicky and Mamma, August 1997

Nicky and Mamma, August 1997

I was looking at this photo in Nicky’s bedroom last night and as I pointed to it, I told Nicky… “Look, weren’t you just simply adorable”? I kept staring at it, and staring at it, marveling how good Nicky looked in this picture, like a normal 9 month old, then I remembered how it was all a lie.

You see, it took me months to make sure he had no “big” wounds or scabs on his face, and the moment he looked good I rushed over to Sears. I covered his whole body with a cute outfit (that had been bought for Alex nonetheless) and somehow I was even able to put cute shoes on him, the one and only day in his life he actually wore normal shoes. I held his hand in mine to hide his wounded hands that were already webbing, and pretended everything was perfect. Back then, as a new mom, I somehow still wanted things to be ideal, hide what I perceived to be anything out of the ordinary. Perhaps I was pretending, putting up a charade, but I loved my baby more than life itself, I craved normalcy.

When I walk into Nicky’s school nowadays, the difference with his peers is so gigantic, it’s hard to pretend anything. It’s not that I haven’t accepted or even think about it that often, but at times it simply cannot be helped. Anytime I take Nicky to school I see dozens upon dozens of these kids helping my son, who are taller than me, drive to school, have girlfriends, piercings, tattoos, even jobs, while the most my son can do is sit in front of his computer all day playing Minecraft and ask me for pain meds. The differences that once could be hidden,  are now as evident and loud you would have to be blind to miss them.

Nicky is Nicky, the most amazing kid anyone would hope to meet. Anyone that has met him and spent any time with him, knows what a true angel on earth he is. He is kind, generous, sweet and thoughtful. He has challenges beyond what any one of us even fathom, and as his mom, this is at times an extremely bitter pill to swallow.

EB is EB, there is no good form of EB, but there is no good form of any illness, is there? Is there a ‘good’ form of Multiple Sclerosis? Is there a ‘good’ form of Cancer? Is there a ‘good’ form of Cerebral Palsy? Yet there are degrees of awfulness within each condition that make it seem as what one deals with is not at all what another is faced with. They cannot even remotely be compared, as a matter of fact they are so different they should be called something else to avoid being compared to one another. Nicky’s version of EB is extremely rare, and God-awful. No, I don’t want a crown, I would give my life for Nicky to be able to live his life without EB. Sometimes I am dismayed and hurt that some people think I must be too lenient with him, how Nicky is overwrapped etc; I had to defend my actions since the day he was born with Doctors, family, friends and more; as if they know my child more than I do. It truly hurts when others blame me for Nicky not being able to walk, or for thinking Nicky can definitely get married and have children when he hasn’t even gone through puberty or can even dress himself or move around on his own; or that I am just ‘mean’ for taking clues from those endlessly complaining, complaining, complaining and come up with conspiracy theories in order to hate people and instead trying to be grateful of all I have instead. Yes, how ‘mean’ of me it to be grateful! All of us have different challenges. I don’t claim to know what you’re dealing with, but I have empathy, the same empathy so many have denied me, the same empathy that is so absent on some people they feel the need to judge, bath mouth behind your back, judging those you don’t know about things you know nothing about helps no-one. Kindness and Love is what it’s all about.

Yes, I am reminded almost daily that as far as EB goes, Nicky has received the short end of the stick. It sucks. I hate to be reminded. Tears flow and I hate that tears flow. His life is so incredibly limited one has to rethink the whole meaning of what life is about. He will never need to get As or win anything for me to be proud of him, I am proud of him just because he is my son, no conditions.  I am so very grateful of the happiness he holds in his heart despite the pain he feels every day. I am so very grateful of how he still has hopes and dreams. I am so very grateful there is this possibility of making his life a little easier with the trials. I am so very grateful he gets so excited when he plays Mario Kart and how he tries every day to beat the ‘world record’! I am so very grateful he gives me a kiss every time I get near him. I am so very grateful his little brother loves him as much as he does and how he makes Nicky feel normal on many occasions throughout the day. Connor truly worships Nicky! It’s so amazing to see my boys cuddle, play together, mess around. It’s all good.

Keeping gratefulness in my heart, always.