As parents, we always want to encourage our children to be able to stand up for themselves. Anytime I feel I may not be doing a good job at this considering how much I advocate for my Nicky, all I have to do is look at my healthy son, now 14 years old. He ROCKS! He’s totally willing and able to stand up for himself. He often asks me how to deal with so-and-so and comes home from school telling me how he successfully dealt with whatever situation he was confronted with.
Nicky however, is a different story.
Raising a child with a rare disease is profoundly confusing and complicated. With something like Epidermolysis Bullosa, we are forced to learn all about wound management, take crash courses in everything that has to do with their skin, and learn how to advocate for medical care, among becoming an insurance expert. Most of us didn’t have any of these skills beforehand, so new parents are often stressed, angry, frustrated, overwhelmed and on the verge of a burnout. We are in a precarious position where parenting isn’t about making sure our kids grow up to be successful adults – but wondering if they will ever become adults. This is why their happiness will always come first.
Even though my child is now officially an adult, I am and will always be his personal secretary and advocate. As a parent, I know all about him, I know his skin more than I know my own. I know what works and what does not; I am with him and see the struggles he encounters every day. While I am in the unique position to help him develop self-advocacy skills, I know he relies on me most of all and I am fine with that. Perhaps, knowing that I am there to help navigate difficult situations at the Doctor’s office or at the Hospital helps him feel at ease. I always try very hard to make sure he has a voice, and I encourage him to speak up, but I do know that the bulk of the advocacy will come from me. He wants it that way.
Maybe Nicky will stand up for himself someday. Maybe he won’t. I will not limit him. I will push him — hard, as I always have. He will be the best Nicky he can be.
Epidermolysis Bullosa isn’t one single disorder. Rather it’s an ‘umbrella term’ for any kind of blistering condition. They can be hereditary or a fluke at conception, and they can be very different from one another. Some types have a very high survival rate, for others, it sadly tends to be the opposite. Patients can be very open about their condition, others try to keep it a secret. Nobody is doing it wrong. It’s up to us to stand up for what we believe in. Nicky tends to be on the open side. Last time I posted photos of his wounds it was upon his request as a matter of fact. He wants people to see what he goes through. So, when I get comments from other EB moms or EB patients (almost exclusively adult girls) who tell me I post the photos for my ‘own purpose’ and to publicly embarrass Nicky, it really hurts. I suppose there will always be someone who will disagree with us and our awareness methods, but I’ve always believed that EB is a condition needs to be seen to be understood. Nothing else works. Nothing else has ever worked.
The truth is, things for Nicky aren’t getting better. My son is 21 years old, lives at home and not a day goes by that I don’t worry about him in some way or another. He spends his day either in bed or at the computer when we’re not changing bandages. He can hardly move and he’s always in pain. He will most likely never marry, nor have a Driver’s License. He will never live on his own. Yes, I know… NEVER SAY NEVER! It’s hard not to. I try not to think about it, but it’s a daily struggle. What I do know is that I love him more then anything in this world. He is an amazing guy in so many ways, he has a dad that adores him too, and has been a great help. I am so proud of him of who he is. He makes me laugh and we can have some amazing conversations. The things I have taught him, like being positive, are coming back to me, as he’s the one that helps me now when I am feeling a little down. He encourages me to no end, and I will never give up because he won’t give up.
Look, nobody should expect to receive applause for their parenting skills. I sure don’t. Still, the condemnation from others can be incredibly heavy for parents like us. Instead of judgment and criticism, it would be nice to receive a pat in the back once in awhile to keep us going. For some of us, things are different. Our child is not getting better, and is it really that offensive that Nicky wants his wounds to be seen? He wants a cure. If those wound photos translate to a donation to either the EBMRF or the EBRP, what the hell is wrong with that?
It seems hard for me to remember how shy I used to be, but no matter how quiet or introverted you are, you will find your voice when your child needs you to stand up for their rights.
Remember, every single person on this earth has a story. Some share it, some don’t, let’s keep mum when we feel like criticizing and perhaps we can work together for a better future instead of spreading hate.
Love & Light,
