Blog · November 17, 2012

Happy 16th Birthday Nicky!

If I had to pick the most challenging year of my life, besides the year I spent crying after Alex died, it would have to be Nicky’s first year. Hands down.

I know. It’s apples and oranges. The year I spent crying over Alex’s death is completely different than the year I spent adoring and caring for my little guy. It was wonderful to finally be a mom, but the challenges I faced were so compelling, at times I wonder how I faced them all without my family’s help. As a matter of fact, I had no help for the most part. My mom, bless her heart, and thank my lucky stars, was there when Nicky was born and stayed until Nicky was about 6 weeks old (my family lives in Italy), later my MIL came to help for about a week because I was going out of my mind. But a total of 7 weeks of help out of 52, well… let’s face it, I was alone. My husband worked most of the time,  there were no nurses that came to help after Nicky’s first month either, I was a new mom dealing with things no mom should. Ever. No mom should poke blisters or tend to wounds. No mom should hold their child while they are puking blood. No mom should have to spend hours inflicting pain on their child just to make sure they are OK. No mom should ever have to grab a needle to poke a blister in their child’s mouth so big it’s suffocating him. Ever.

Over the years I had to see and witness my child go through things I would not wish upon my worse enemy. Make no mistake, Nicky is an angel. I rarely, if ever, see him mad.  If he gets frustrated or upset, he either cries or lets out a grunt. He learned that from me, ha ha. I am so done getting mad over things I have no control over, at times all I do is let out a grunt, a roar, and I go on. It saves my blood pressure from going through the roof. Nicky feels the same. He has no energy to throw a fit, a rage of any kind. He just lets the tears flow. EB is relentless, does not stop for anything or anyone. It’s a struggle to keep fighting at times, but we WILL keep fighting. There is a light at the end of the tunnel. We’ve seen it. It’s coming. It may not be a full blown cure, and at this point, we’re not expecting it. There are a lot of Doctors all over the world working on various ways to ease the pain, lessen the symptoms, have wounds heal faster & make the skin tougher. We have faith, hope, a glimmer of a hint that the future is not one we should be afraid of, but one that will bring healing. Maybe not 100%, but we’ll take any percentage, because ANY percentage is better than what we have to deal with now.
How long is the wait for ANY treatment? I am hopeful that something will come down the pipeline within the next 5 years at most, but regardless, since Nicky will be 18 in a couple of years, he’ll be eligible to be part of trials at that point. The trial I am most excited about is the one at USC (I wrote a blog for EB Info World about the Protein Therapy they are working on-very exciting!), and since we’re close… who knows.

Photo courtesy of Jodi Champagne Photography

On November 25th, Nicky will turn 16. It’s hard for me to believe, at times, all that he’s been through. 16 years is a long time to deal with pain day in and day out.

To my darling son… Sweet Sixteen! I know life is tough. I do. I see it in your eyes every single day and it kills me. But I also know how much zest for life you have despite it all, and how much you enjoy playing your video games and how determined you are to win this war against EB. You saw how your left foot could not longer be flattened to the ground, so you exercised every day, despite immeasurable pain, to make sure you could flatten it again. I am SO PROUD of you! You do not let EB get in your way.

I promise you to never, ever give up on you. EVER.

Happy Birthday!