Blog · April 27, 2017

We are the Experts

“This message is so simple, yet it gets forgotten. The people living with the condition are the experts.”

I was reading an interview with Michael J. Fox on a magazine and when I read that line I had to underline it a million times. Not only because it’s true, but because it reminds me that asking my son how he feels or what his pain level is on a daily basis is so crucial.

Nicky is a pretty brave individual, and he never truly volunteers this information unless it becomes so over the top painful that he has no choice but tell me so I can give him some pain meds. He’s spoiled me in many ways, but he reminded me to ask before doing anything to him or ask permission a couple of weeks ago and I felt horrible about it. I apologized and told him I will try to be better. I am far, far from perfect.

Truly, I get it. I try to ask more, but after doing this for 20 years, some things become automatic and I know they shouldn’t, yet, here we are. Nicky is almost a full-fledge adult now, as he’ll turn 21 in November, and I have to keep reminding myself of this as I am still basically doing everything for him. It’s a struggle for me at times, it really is.

Even so, I am constantly encouraging Nicky to speak up. I don’t want him to hold back his feelings to me, afraid to rock the boat. Bottled up feelings can lead to mental and physical illness. I do the same with my healthy child as well, I want him to tell me his feelings. Of course, with boys, the issue of “sharing feelings” is always something they keep on the backburner. They don’t want to talk about them. I need to get them out with plyers. To me, unfortunately, they are essential to take care of them properly.

The reality is that our family has been deeply impacted by EB. While it’s true that at times it’s not a big deal and we can pass for a somewhat normal family, most often the challenges are significant. We face ordeals and roadblocks that are hard to explain or clearly convey which range from daily life to insurance denials. To call our life “extremely frustrating” sometimes it’s an gross understatement. The day-to-day grind can be exhausting.  But nobody wants to hear the struggles. No mainstream media is covering that story. The worry, the stress, the frustration.  It’s not fake news. It’s our life.

Another point about expertise is that I really love when Doctors or Nurses ask me about what works best for Nicky. To that I scream YES!!!! Even Nicky, when asked from Doctors questions he looks at me to answer. He knows I can be quite eloquent and afterwards he tells me I “nailed it”. It it so gratifying to know my son approves. We are a team. #teamNicky all the way.

Tomorrow I am going to have a new episode of “Butterfly Talk” after a long hiatus. I will post a link when it’s done.

Thank you so much for your support and understanding!

Love & Light,