My name is Adrienne, my daughter Izzy is two and a half years old and was born with Epidermolysis Bullosa Simplex Dowling Meara. When we first received her diagnosis it was a relief to finally have answers as to what was going on. Since we had never heard of EB before, it created a million questions. My biggest concern/question was “would I be taking my baby home with me?” When the doctors had no clue what was going on and her condition kept getting worse, we were terrified our daughter would die. A tough situation to be in for every parent, let alone two new young parents.
Thinking back, I remember we were so excited to have a baby. I expected to spend the first couple months of her life at home surrounded by family… I didn’t anticipate spending that time in the hospital surrounded by doctors and nurses who would eventually become like family. I planned on cuddling her as much as I could… not being afraid to hold her in fear that I would hurt her. Dressing her up in the cutest of outfits…instead we struggled to find suitable clothing that wouldn’t damage her skin. I thought we would go for lots of walks and mommy and me groups…but instead I spent my days learning wound care. I didn’t anticipate any of this and that’s ok as a parent, because you will do anything for your children.
The first couple of weeks were full of self-doubt, was I capable of taking care of my daughters special needs? Am I the one best suited to be her mom? Could someone else do this better? Izzy’s father helped with the first official dressing change, as I was too afraid to do so. It was and still is heartbreaking to put your child through pain for their own benefit. It tears me up inside seeing the look in her eyes begging me to stop, knowing that I can’t, and I have to get it done regardless of how uncomfortable it is. I only hope one day she can understand why we’re doing this.
It’s crazy empowering and scary when you truly know more about your child’s disorder then their Pediatrician or doctor. As Izzy’s parent, I am the expert on her… I am her advocate, as well as her mom. It’s not always an easy job, but it’s rewarding and I wouldn’t trade it for anything. My hopes for the future is of course that they find a cure, but I also long for awareness about this disorder is it is so unheard of, and strangers ignorance can be hurtful. I hope that Izzy ALWAYS knows how beautiful she is inside and out, and that she knows how much her father and I love her.