Blog · September 16, 2016

EB Parenting is not for sissies

Can you remember a time in your life when you felt completely helpless?

I do. It was the day when a Doctor escorted us into a small room in the hospital after Nicky was born and told us the grim news that not only our newborn son had a rare, extremely painful incurable disorder, but that he would most likely not see his first birthday.

I was in shock. Only 19 months earlier I had a baby that was stillborn and I just sat there, numb.

Nicky is going to turn 20 years old in two months, and in these two decades I had to learn to be my son’s super-hero, while dodging bullets from all sides. Let’s face it, Recessive Dystrophic Epidermolysis Bullosa is not something you “conquer” or that improves, ever. The diagnose is deadly and scary as hell. I know this only too well. Many of my friend’s children have already passed, but as I tell my dad every week when he calls is that he’s “stable”. He’s “hanging in there”. It’s true. While often he gets upset or frustrated during bandage changes or when he notices a new blister/wound, I often hear him laugh as he plays and he’s often content in just watching videos. He’s my hero.

Thinking outside of the box when he was born became my mantra. I had to learn to trust my gut-instinct and take everyone’s advice, including Doctors and Therapists, with a grain of salt. Afterall, Nicky’s EB diagnose was so unique that there was no way any Doctor could be an expert on such a rare condition considering how different each patient is on top of it. I did my own research and tried everything under the sun. The reason why some things that worked on other patients didn’t on Nicky was because, as I suspected, his genetic mutation was ultra-rare.
screen-shot-2016-09-16-at-15-28-01I went above and beyond. I read every book I could get my hands on that was even just remotely related. I had to learn from my mistakes. There was a lot of trial and error before I could find something that worked. It became my obsession to find things that worked on him.

It’s easy to become overwhelmed when faced with a situation there is no guidance for, and it’s also easy to lose perspective. I experienced every emotion in the book. I felt like a complete and utter failure one day and invincible the next. I would be the most stable person on the planet one day and would lose it the next.  At times I didn’t handle things the best way, so over the years I learned to be a little selfish too. I write, I read, I watch movies or TV shows. I’ve even done cross-stitch, crochet, scrapbook, photography… anything that would make me happy, that would distract me from what was going on that day. It worked wonders.

I also had to learn to seek people that lifted me up, rather than pulling me down. The negativity on social media is tremendous. People unfriend you for no reason. I just noticed one lady which I have a lot of respect for, has unfriended me AGAIN (she friends me and unfriends me like a game of ping-pong). Perhaps I am now losing respect for her. Perhaps people like that do you a favor. They are not really your friends, right? Some examples of fake friends are those that make all sorts of promises they don’t keep, forget you exist, if not worse. There is an old saying that goes: “When people treat you like they don’t care, believe them”. I am learning to. So I looked long and hard for people that did mean what they say and don’t put me in a dusty corner when they don’t need me anymore. Unfathomably, I found a long lost friend on my trip to Italy this past July. Just being with her lifted my spirits. That’s what we all need, people that lift us up. They are jewels. Keep them near and dear.

At the end of the day, when you stop and think about everything in your life you can be thankful for, it can only improve your mood and make you think more positively.  I have a LOT to be thankful for. I have a beautiful and amazing family. I adore my husband. And my youngest son makes everything brighter. He makes us so proud! Not only he’s bringing home As and Bs, but he just recently made the Cross Country team and he’s passionate about both running and Karate. I love how he loves his big brother too.

Making positivity a daily habit is powerful and important.

Love & Light