If there is a sentence I hear a lot from family and friends in general is how “strong” I am. Before the stillbirth of my first baby, before the miscarriage, before Nicky’s birth, I somehow thought that strength had something to do with “grin and bear it”, or having somehow the ability to have no qualms or uncertainty of what to do or how to handle a variety of situations. But strength, I found out, has nothing to do with our outward projections of it, nothing to do with muscles, or not showing emotion, and everything to do with allowing ourselves to feel whatever needs to be felt at that moment, let it all out and then deal with it.
When I accidentally stepped on Nicky’s hand when he was 10 months old crawling behind me, ripping the entire skin off his hand, the last thing I was is strong. I am not sure how I would even describe how I felt. I froze in terror. I was petrified. I sat on top of the toilet, holding the bloody hand high while Nicky was screaming in pain and I didn’t know what to do. I felt like the worse mother in the world, kept telling Nicky how sorry I was, crying… Next thing I know I had a dozen firefighters in my bathroom staring at us incredulously. I assume it takes a LOT to shock a firefighter, but we managed to shock them that day. EB shocks people, it really does. They got a bunch of vaseline gauze and wrapped Nicky’s hand and offered me a ride to the hospital. In the ER the Nurses were shocked, the Pediatric ER Doc wanted Nicky to be transferred to a burn unit, as he didn’t know what to do either.
We were new parents of this extremely fragile child and not only we didn’t know much about EB per se (not much info to be had in the days in the Internet infancy), but anybody around us was oblivious. This is why I feel strength doesn’t really comes from anything supernatural, it comes out of despair and heartbreak. It’s watching my son being braver than brave and never complaining.
The contradiction of it all is that parents of special need children find their strength not truly in themselves, but through their love for their child. Our children are both the source of our deepest love and our deepest worries. Nicky knows how loved and adored he is, and I am determined to show him daily.
Love & Light,