I didn't have time to blog yesterday because I was busy working on my final blog post. And I wasn't sure I would get time today either but while doing the dishes my thoughts started to wonder and decided to write about what its like as an adult with EB and be an EB parent. And thought my intent is NOT to offended anyone with my writing, I know it's very likely that some or many maybe be offended by this post, so if you are an EB parent and offend easily, it might be best not to read this:-)
With the onset of National EB Awareness Week many EB parents have shared their child's birth story and how shocking and heartbreaking it was that their child was born with EB. While I do have three stories of my own, they are not very similar to the many I have read this week. There was no shock that my child was born with EB; we knew it was a possibility. I was not horrified on how much skin my child was missing; I already knew what EB looked like. While I was saddened they had inherited EB with from me and I knew things wouldn't be easy, I didn't think even for a second their life or mine for that matter was over because they were born with EB.
As an adult with EB, I do understand how painful baths are; As an EB parent I also know how necessary they are and do what I can to make it fun and as painless as possible.
As an adult with EB I understand how painful wound care is emotionally and physically and sometimes there is no amount of pain medicine to take away the pain; As an EB parent I try to make it as comfortable as possible and let the child have some control...even if that means it takes hours to get it all done.
As an adult with EB I understand how damaging itching is to the skin but i also know its like an addiction and very difficult to stop; As an EB parent I try various ways to relieves the itching but also know my child is going to itch some days to the point of bleeding and there isn't anything I can so to stop it.
As an adult with EB I understand how humiliating is it to spend hours at the doctors office having even inch of my skin document on
film or worse sitting in just my underwear while dozen of doctors and
medical student parade thru the exam room to see what EB looks like; As a EB parent I do not allow my child to be put on display at the doctors office or hospital. We only do what is necessary to stay healthy and while I am all for educating and teaching it can be done with exploiting my child.
As an adult with EB I know what its like to be turned into guinea pig and subjected to "experimental" treatments involving vitamin supplements medication or other procedures all in the name of science. As an EB parents I will wait until my child are old enough to decide from themselves if they want to participate in such things.
As an adult with EB while
I was not taught to hide their EB (though some with EB were)
it also wasn't something openly shared either. Maybe it was because it
was a different day and age and the technology available today wasn't
available then. As an EB parent my kids know they have EB; they know other kids their age with EB. They are encourage to tell people about it if they want to but I don't force them too. I suggest ways they can deal with questions from strangers but also tell them its ok to tell people its none of their business.
As an adult with EB we did not have the internet or social media when I was growing up. My parents did not post pictures of my wounds for the world to see or express how much they hated EB for their friends, family, co-workers and eventually for me to read when I got my own Facebook account; As an EB parent i never try to hide the fact that my kids have EB and I do post things and pictures about my kids' EB but I am very cautious about what I say and about the pictures I post. I try think about how they would feel someday if they were to read something I posted before I post it.
As an adult with EB I know how hard it is to only have few friends and be made fun of at school. As an EB parent I teach my children that in order to have friends you have to be a good friend. If people really want to be your friend, they will care less you have EB and if they do care or make fun of you for it, then they don't deserve to be your friend. And while there will be those people who will tease and make fun of you, you will also find some great friends just like I did!