If there is something that is prevalent in our society, is the saying to those that suffer: “Hang in there, things will get better”, which is fine and dandy if it’s said to someone whose condition will, indeed, get better.
When you have a child with a “terminal” condition, however, (Nicky has the Recessive Dystrophic form of Epidermolysis Bullosa-Hallopeau Siemens subtype) a child that gets worse and worse all the time, when I hear that somewhat canned statement, while on one hand I appreciate the kind thought, on the other hand it reminds me of the undeniable truth.
Yes, I can “hang in there”, sure, but things will not get better. Ever. The only thing I get to look forward to is watching my son get worse and worse. I can’t even think beyond that. I already buried a son, my mind is prohibiting me to go “there” for self-preservation. I must have hope, must, if only so I can live my daily life as a functional human being. Not sure I am a functional human being sometimes though, especially the past few days since I ran out of my anti-depressant and the Doctor is taking her sweet time refilling it. I wrote about her in my book “Butterfly Child“, I never had a therapist that “got me” and I know she didn’t either. She could not wait to get me out of her office. It’s a shame, really, when the only people I can count on to “get me” are other moms in my shoes.
If I was to tell the honest truth, the only time I see Nicky “better” is from videos and photos from the past. That’s it.
As of right now we’re playing a game, Nicky and I, of improving things. We use concoctions of oils, creams, gels, cannabis, you name it, we have tried it, to cure wounds faster and better, and they have helped some, but the truth remains as loud as ever, he’s not getting “better”.
Nothing has ever worked at stopping the blistering. Nothing, except the bandaging. The bandaging that I am always needing to explain on why I do to every Doctor and Nurse under the sun. Like I said, nobody gets it. Not even them. Bandaging is the padding, the layer of protection against getting wounds in the first place, wounds that can cause deadly infections and skin cancer. No wounds means “life” to my son. We don’t want any wounds, I will walk on coal to make sure Nicky does not get any wounds. Nicky gets it too, by the way, he totally gets it. He’s always telling me when an area was not bandaged enough and that’s why he got that blister the size of Texas. Sometimes I think only Nicky and I get each other. Only we truly know how to take care of him. It’s depressing to know we are alone in this.
Yes, he will never, ever get better. It’s depressing as hell, and it’s the truth. This is why I am so adamant about raising awareness, getting this cure, treatment or whatever, under way as so these children and adults can live without suffering so darn much, from dying young, from putting the families through this hell.
Because, make no mistake. RDEB is HELL.
Thank you for listening and for understanding.
Love & Light,