Blog · November 2, 2018

Life of an EB Mom

My son and I had two incredibly hectic days this week. We drove to Stanford one day for 6 hours, and the next day we were in the hospital all day where Nicky had surgery until 5pm, and then we took a 7 hour drive home-longer because of traffic. That trip was so exhausting for the both of us that we are still recuperating 3 days later. I wish I could say I can just rebound from things quickly, but at 54, there is no such thing. Nicky is still in pain from the surgery but he’s doing much better.

Nicky humbles me every single day. Just before surgery he realized he had a blister in his throat. He coughed and threw up for 2 hours until he happily told me he popped the blister and he threw up the ‘skin’ of it. Here’s to my son, the hero… he was so thrilled to be able to drink and eat again and being able to swallow it’s heartwarming to say the least.

But Nicky does cry on occasion. Not from pain per se, but from sheer frustration with EB. “I am so tired of it all” he says. His best way to cope and forget it all is playing games. As a mom these episodes drain me in ways I can’t quite put into words. One one hand I want to be his cheerleader, telling him we are THIS close to a treatment, to hang in there, on the other, I want to make sure I am there for him no matter what. If he ever told me he “gave up'” I am not exactly sure how I would handle it, but I cannot say I could blame him. One day at a time is all we can do. One day at a time.

I know we all have our mountains to climb, but Nicky’s mountain seems more like twice the size of Everest-especially on a week like this. Seeing Nicky throwing up blood from his mouth and nose in excess at the hospital was just too much for me. I felt weak in the knees. Just to see him just lying there with his lips caked in blood, I mean, for goodness sakes. Kids like these (even though at 21 he’s not a kid anymore) need so much love and suffer so incredibly, it really makes me mad when anyone diminishes their suffering. You know, when people give me those ‘We all have our crosses to bear’ platitudes. If only we could take away 50% of their pain, they would think their life was a vacation.

I hate when anyone makes me feel as if I exploit my son’s pain or sarcastically wants to label me as the “queen” that deserves a crown for having a child with the “worst” case of EB. For one, I am FAR from having a child with the worst case of EB. FAR FROM IT. I’ve seen worse, much worse. I don’t want a crown, I am not the queen of anything. I would give my life for Nicky to be spared his pain. I even had one individual tell me how I use my son to “profit” (regarding the book I wrote). It just makes me mad to think that people in the EB community think so low of me to believe these things. My Book was self-published, so I did not receive an advance nor am I paid by any publisher. At this point in time I’ve “given away” more copies than were bought. I only make about $2 per book sold, which I turn around and purchase books to give away. All in name for awareness. I do this because Nicky wants people to know about his disorder. I don’t much words, I don’t exaggerate, I tell it like it is. We need a cure. Awareness is my goal. For better or for worse, EB is what my life revolves around. It is what it is. And “if” I was making some money from the book (which I am not anyway), considering I had 2 bankruptcies to take care of Nicky, please someone tell me why this would not be something good for our family anyway? I will never understand why it’s OK for a celebrity to make money off a book but not a struggling family? And we aren’t anyway. Shame on all of those that think this way.

While I am venting, please let me get on my soapbox. After nearly 22 years of dealing with EB and being online, trying to spread awareness, I’ve also received an enormous amount of useless and unsolicited advice from people that don’t know EB, let alone Nicky specifically, and some of this “advice” was so astoundingly stupid it defies explanation at the motives. Of course some people’s motives are quite clear: they want to sell me something.
I’ve said at nauseum that every EB patient is different, yet the unrequested advice often comes in droves. I did write about it in my book Butterfly Child. Magical creams, fairy waters, herbs, special baths, even Yoga! I understand some may ‘help’, but they use the word CURE. That drives me insane. I know people mean well, so I’ve let it go for the most part. “Thanks so much, I’ll look it up!” is my usual reply.

I’ve also had some people ask why I moderate comments on some of my youtube videos for EB awareness. To me “comments from strangers” are an unknown that I cannot risk being automatically public. On some videos I even turned the comments off. I do see that while most commenters are compassionate and caring, I do have to delete one every now and again because they are just … horrible. One of the recent ones stated “It effects only 0.01 of the population and only white people have it. No-one cares about this BS”. Nice, huh? And it’s completely wrong anyway. EB effects every race and gender equally and globally. It has nothing to do with “melatonin” as one incredibly stupid jerk’s website continually tries to spew. RDEB is a genetically inherited recessive condition, which means that his dad and I each unknowingly passed on a mutated gene to Nicky, causing an error in his genetic code. This mutation means his body does not produce a protein that helps his skin form correctly. Most RDEB parents do not know they are carriers, and a baby born with this is almost always a surprise. We did nothing wrong. Nobody did anything wrong. We just have to deal with the situation at hand. There is no way around EB. We can only experience it as bravely as possible.

What encourages me is the positive reinforcement I receive from people that I respect. A few months ago I talked to the new EB Dermatologist at CHLA and 3 of her interns. They had their ears and hearts open regarding Nicky’s particular struggles, our wound care etc., and when they told me how impressed they were about my knowledge and what an expert I was on my son’s specific diagnosis they made me feel so good! Almost vindicated. I may not be an expert in much in my life, but Nicky? I know every inch of this kid’s skin, better than mine, and it’s nice to know when EB doctors acknowledge it.

Nicky is truly the hero of the story, he always was and will always be. He has a passion and an appreciation for life that humbles me. While his body is always in a healing state, his spirit is strong & resilient. I am so proud to call him “my son”.

Love & Light,