RDEB gets worse with age. It really does. Not all forms of EB get worse with age, but Recessive Dystrophic Epidermolysis Bullosa definitely does.
I try my best to be upbeat and positive, … to smile… “Nicky’s going to beat this”, yadda yadda, then on some days like yesterday, all I want to is disappear. It was a low I do not wish upon anyone. When your son tells you he wants to “give up” it’s a hard pill to swallow.
Today I dust myself off, get up, and try to be positive all over again. My son needs “happy” me. I do try.
Nicky overall is hanging in there. He has some worrisome wounds, a throat dilatation that he needs but cannot get due to COVID-19, and the usual daily wound and bandage change routine that drives me up the wall because I have to witness my son cry and cuss and, in tears, telling me how much he HATES EB.
It sucks. EB sucks. Life with EB sucks. It’s a never ending misery.
I would like to say EB is only “part” of our lives, or that he’s “thriving” but I cannot. It dominates our lives in ways hard to describe.
Sometimes I like to remember how things used to be easier. Back when Nicky’s wounds weren’t as bad, when his wounds would heal. They might have taken a long time, depending on location, but they would heal. This was back when he could walk, when he could at least “try” to dress himself. Don’t get me wrong, the CBD stuff is helping and he’s doing better, but the stubborn wounds… those are still there. His feet are still as fragile as ever.
Walking for Nicky has always been a challenge, but he “could” do it until around his 15th Birthday. While he could handle it OK while he was younger, time and wounds made the skin at the bottom of his feet so fragile he’s scared to even try nowadays. Just transferring causes blood blisters and damage that takes weeks to heal. If it heals, that is. His feet are so incredibly sensitive that I cannot even touch them without him crying in pain. It’s hard to explain to the Doctors this. It’s definitely “nerve” pain. They just don’t understand. They see other “walking” EB patient’s feet, which can and often are much worse than his and they continually push Nicky to walk, which makes him very upset and make him cry. I don’t know why they keep pushing when they know this. Ugh.
I don’t know why other RDEB patients can walk and Nicky can’t. Every EB patient is so different. Is there a difference of pain threshold? They don’t have nerve pain? They make “some” collagen type VII while Nicky I know makes none? Is it perhaps a difference in personality? I don’t know. I sure am never going to force Nicky to do something he flatly refuses to do. It is what it is. I am just here to support him. Do you think is fun for him to see how other EBers can walk fine, get dressed on their own, drive a car, change their own bandages, be independent, have relationships, get married and have children when he will never, never, EVER be able to? Do you really think I am making this shit up to make people feel sorry for him or me? This is our TRUTH. This is our REALITY.
I asked Nicky last night what he would most like to be able to do that he cannot right now.
He said:
1. Walk
2. Eat
3. Use his hands to do stronger things, like opening the fridge etc.
Even though a cure may not come in time to save his life, if, at the very least, he would be able to do one of those 3 things, I know it would be heaven for him. The everyday things that we do, for him are not possible and when they get to him it’s heartbreaking to see and I always feel terrible.
I get sad that when I am planning something that should be fun, it’s coupled with so much stress and back up of plans in case it goes bust… I know it can and will happen because things have gone bust so many times before. It makes me not want to go anywhere some days and that’s why we rarely do. Of course now we’re on lockdown, so even his yearly Camp has been cancelled. We don’t do “spontaneous” anyway.
A while back I opted out of all the EB groups which was hard for me to do since I ran a few when Nicky was little. I needed the help and I genuinely wanted to help people. For one, there was the never ending misery of hearing of other children dying. There would be at least one per month. It was depressing, I would get morose, and I needed to be positive and upbeat for Nicky. It was counterproductive. But what made me completely leave was the fact that I was being judged and being told that Nicky can do things he cannot do and that apparently “I must be exaggerating” because “all the other EB kids” can do this. If EB people and other EB parents can be so judgmental instead of supportive, when they have never even met Nicky, how can I be part of this “support” group? I was disappointed and extremely hurt. I left the group but I felt it was more appropriate for me to keep friendships that I deemed essential to me. There were some EB patients and other EB parents that I truly adored, who “got me” and they helped me more than any random “EB group” I ever ran across.
Sometimes when I was part of these groups I wondered if these EB patients knew that very EB patient is different? Did they think is was fun for me to do bandages day in an out and see Nicky suffer? Did they think it was fun for me to see that other EBers didn’t need to be wrapped or could do things Nicky could only wish he could do? It is impossible for anyone to understand the pain and hopelessness we EB Mom’s feel sometimes.
I was told once by a psychiatrist that caring for a child with this condition is a huge burden on my family and to please consider placing him in a home so I could pay attention to my other son and have a life of my own.
I couldn’t believe he told me this. I remember driving home in disbelief. Who would be better qualified to show my son love and care than his family? Besides, this is my son, my responsibility, not a problem to be handed off to an nurse or an institution.
Thank you for letting me vent everyone… I needed that today. Keep praying for Nicky. He needs your prayers now more than ever. And, of course, a CURE.
Love & Light,
