Blog · May 4, 2016

How To Show Respect to an EB Parent

The other day Nicky had his first appointment with a Physical Therapist in our home. Aside the fact that this was the first time in his life that his insurance approved such a thing, I wasn’t sure exactly how she was going to accomplish anything with Nicky, knowing that moving at all is just so painful for him and she can’t touch him at all.

My worries however, had to take a backseat when she said something to me you should never, ever say to a parent of an EB child, especially one as old as Nicky. Without knowing anything about EB at all, she told me to “be careful” of what I put on his wounds. “You can’t just put any cream on wounds”. She said.

Hmmm… Duh?

Mind you, she’s not a nurse nor a Doctor, she’s a physical therapist, and she never saw Nicky’s wounds, I had to describe them to her, yet she’s lecturing *me* (Nicky’s 24/7 nurse for 19+ years), on how to care for his wounds? Did I feel disrespected much?

It would have been one thing to ask me “what” I put on his wounds, but to assume I am such an idiot that after 19 years of daily care I still need to be told what to put on wounds, instead of being treated and respected as the expert on my son that I know I am is something that really bothered me.

Just to let her know how wrong she was on her assumption, I told her the cream I was putting on his wounds at the moment was part of a clinical trial specifically for EB patients, yet she didn’t even look up from her paperwork, stated “oh, okay” and changed the subject. Gee. Thanks.

12814736_1119332474766910_3846480437670951148_nI would like to say that this is a rare occurrence, that I am usually treated as an expert on my son, but the truth is, it’s not. Just a couple of months ago I was told by a girl (with EB mind you), that I am doing “everything wrong”. Yep, out of the blue I get this message on Facebook from this girl (that I since blocked) telling me I must be some sort of dummy, apparently, stating her opinion without never having met my son. I asked her how she would feel if out of the blue Nicky would tell “her” mom she’s doing “everything wrong” and she told me that her mom would be able to take care of Nicky “better than me”.

WOW. I don’t know what her mom taught her, but apparently manners were not a top priority.

Look. Special Need parents do not ask for much, but if there was one thing we need and frankly DESERVE is respect. I am humbled that all the Doctors think I am doing a superlative job with Nicky, so I take that to heart and try to ignore those that feel the need to tell me otherwise, as their opinion means squat at the end of the day. But if there was one thing I would like to make sure everyone knows is that every special need parent is indeed an EXPERT in their child and should be treated as such.

Love & Light,