Please Note: I had published this post on HubPages but they keep deleting my posts for all kinds of crazy reasons (not high enough ratings, what?). I finally gave up on them and here’s my post again.
Reflections and Confessions…
I just finished reading a beautiful, photo-filled book of a mom of a beautiful girl with Down Syndrome, and despite the heartache and the many pages I earmarked because “I feel the same way!”, at the same time, I realized that the book I am writing (which will have photos throughout) about Nicky’s life, will not really show what we deal with everyday. The realities of having a 17 year old with Recessive Dystrophic Epidermolysis Bullosa, with wounds that haven’t healed in a decade, the horrible, crying spells Nicky has for everything under the sun, the heartache and the pain that never go away, will be hard to explain in the written word, they have to be seen in person to ‘get’. Nicky does not yell, cuss or get ‘mad’. He cries. I hate to see him cry sometimes because I don’t know if it’s something minor (he can’t reach his tissue box) or something major (he can’t breathe-as it happened at the hospital yesterday). My friend Jodi Champagne did a photo documentary of Nicky’s life, and it’s not a pretty picture. It’s called ‘Courage Under Wraps‘ and everyone that sees it comes out a different person. I know because they told me so. Even my own husband was completely taken by it. To be honest, looking through it took a toll on me, and that is MY life on those pages!
Nicky’s HydroTherapy, photo courtesy of Jodi Champagne
So, I confess. My pictures are not as pretty as Kelle Hampton’s. They will never be. They can’t be. Anytime you see a photo of my son he has a wound, a bandage, a scab. Nicky can’t do much playing around outside, on the beach or anything even remotely close. He spends his days doped up on Hydrocodone and Morphine, playing Minecraft, his Mario Games or watching TV videos and changing bandages. He can’t even eat, he’s tube fed, so imagine my surprise how one day in the hospital a few years ago, when he changed the TV channel to the food network, I asked him what career he might be interested in and he said ‘pastry chef’. I mean, he can’t even eat this stuff. He can’t eat anything, really. His hands web and contract and have to be bandages to retain usability.
So, what I am trying to say, is that even when I dive into someone else’s worse nightmare, it makes me feel bad because my nightmare seems worse to me. And I feel horrible for feeling that. I feel horrible for even thinking it. Thankfully, I do feel empathy as well, so maybe, it’s my redeeming quality. I hate seeing people suffering, and I don’t use that word ‘hate’ easily. I don’t hate much of anything, but I do hate EB. Damn you EB!
