4 Things I Wish People Knew About Parenting an EB Child

As the mother of a child with a complex medical condition, I feel that there are some things everyone should know about what it’s like to parent this child, whether he or she is 1 or 21. 

In my case, of course, as Nicky is getting older, things are getting more complicated. He’s less mobile, he has more issues, more doctors, etcetera. RDEB is a degenerative condition and the issues we may face are most likely different than what another family may encounter, but we all have similar wishes as far as how we’d like to be treated and what we’d like everyone to know about our journey.

These are the most important ones to me:

1. I am not ignoring you. I try to respond to questions or chats promptly, but sometimes it’s simply impossible. When Nicky calls me I run to help him. He knows not to call for things he can try to do himself and at times he waits until he needs several things before he calls me, yes, he’s really THAT thoughtful! This is why I run when he does call, because I know he REALLY needs me. I had laundry sitting in the dryer for 3 days recently because I simply could not get to it. I do the best I can and I have to prioritize accordingly.

2. It’s truly OK to ask me how my son is doing. I try to post updates on his Facebook Page every now and again, but I want everyone to know it’s nice when people ask because it tells me that someone cares enough about him to wonder how he’s doing lately. 

3. No matter if the child is 1 or 21, we will always need support. Our struggles do not end at any magical age, and even though it does become our new “normal”, at the same time, it’s really nice when our efforts are acknowledged or our child is thought of as strong or even an inspiration. I know many who don’t care to know that, but Nicky does. Now you know! 🙂

4. While we do want and even crave support, that does not mean we like when we hear “poor baby” too much. Sympathy is okay when someone dies, but our children are still here and we’re trying very hard to make them happy. It’s hard to explain how that makes us feel, let’s just say it’s not a positive. It makes us feel bad and you don’t want to make us feel bad, right? We’d much prefer a smile, a “Hey Buddy”, a kind word goes a long way. Believe me. 

Love & Light,

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