My daughter is 18 months old, and quite naturally, she will stare at someone new. However, I always say to her, don’t stare, but you can say hi. And because she is this bubbly, happy little person, she does not have a problem, throwing her hand up, saying very loudly.. HEEEEYYYYY, and will start a babbling conversation with you. It’s okay to just say ‘uh huh’, ‘I know’, or ‘for real?’ No matter how much, I say ‘hello’, she has chosen HHHEEEEYYYY! Then as we push-off or leave, I tell her to say bye-bye, and again, very loudly she yells BYE -BYEEEE, with this very proud wave she has concocted.
This is my first time at the wheel of motherhood, but it seems rude to stare at someone, regardless of the reason. Within the Epidermolysis Bullosa (EB) community, many of the children have scarred skin badly or covered completely with bandages, except their faces. I have heard many complaints, within our community how it upsets them to no end, especially the children. Listen, we would rather you not stare, and if you are curious, ask. Remember these are still children, and the look you give is heartbreaking, although you don’t know it. They can’t help it. It’s a genetic disease that has no cure, and unfortunately it is real.
If you do not know what a severely affected child looks like, imagine someone who has 3rd degree burns, everywhere. These children have not been burned; their skin is extremely fragile, and it is easy to experience tears and/or blisters, which is extraordinarily painful. There are children who have fused fingers. It looks like their hands are missing. They are actually there, their skin has just fused together.
Do you see why EB is the worst disease you have never heard of?
There are children, like my daughter, who has this diagnosis, yet show very little to no sign of this disease; it isn’t uncommon. We are fortunate, but we will never forget about the other families, who are still actively fighting everyday for a cure or better solutions than a screaming child during bandage changes, while preparing for a pool salt or diluted bleach bath. Weird? Well, constant infection is a serious threat. If one goes undetected, it could be deadly. So, please don’t stare. Speak, ask questions, be informed, and know that you have just given a mom and dad a validation for getting up every day, doing what they must. We just want our children smiling, happy, and as comfortable as possible.
After becoming a mother, I knew that I was going to be a great mom. I didn’t know much about babies. While my high school friends were making babies, I was in college. With my college friends, I am the first to get married and pregnant; needless to say, they weren’t much help. We didn’t know anything; however, they all believed that I would do a great job. They had more confidence then I did. It was so scary.
When she got here, she was magical and had all ten toes and fingers. It was nothing short of a miracle. Everyone should have kids, especially if they want children. It’s a treasure that should never be denied to anyone. Motherhood and all of its glory and fabulousness is the best kept secret.
Then something terrible happens…
The doctor tells you that your daughter has Epidermolysis Bullosa (EB). I looked at my husband, he looked at me, and we weren’t sure what to think, because we had never heard of it. Then we began researching EB, and found the most gruesome pictures of children that had 80% of their skin missing. We found YouTube videos that had no audio, because the screams of the child, during bandage changes, were to horrific for its viewer.
I threw myself into this community, even though, I couldn’t look at the pictures or watch anymore videos. But, I had so many questions and concerns. I wanted to know if we were going to have a normal life; what does EB mean for our daughter. I couldn’t bear it, but I had to. So I joined the support group EB Friends (www.EBfriends.ning.org). Where my spirit began to calm, eventually, was when I joined the EB Lounge on Facebook named Epidermolysis Bullosa Lounge 🙂. This is an open group, and anyone reading this is welcome to go and experience true UNCONDITIONAL LOVE.
I became fast friends with several of the women within the group, from all over the world. I had become a part of a core five support group, for us mommies, when we aren’t focusing on EB. We live in the US, Norway, and United Kingdom. This will later become one of the next best thing I could have done for myself! One day we were messaging each other, and we found that even with EB, we still had OUR lives to live, and for the most part, it was seriously neglected. At this point, EB had become my life. I hyperventilating at every movement and moment. Although, my daughter didn’t look like any of the other children, and our experience was truly miniscule compared to so many others, I was so scared. I had stopped living, and had begun waiting on her skin to start sliding off.
My baby never crawled right, because I wouldn’t let her on the floor to properly learn. During this time, my weight continued to balloon out of control. I had forgotten how to live, because I was completely living for what ‘was’ to happen, although we weren’t sure that it was going to happen or when it was going to happen. I was ready, though! I had learned how to bandage better; I got over the loss of a toenail or fingernail. I was waiting on the biggie.
Then someone sat me down, and ask me something so simple. She asked me, “are you imprisoning your baby?” I didn’t like that question, because there wasn’t anything that was positive about that question. The implications made me sick to my stomach. I knew that if this is what I was truly doing, then I was NOT being a good mom. A tear rolled down my cheek, and I said, “how’s that possible? She can’t get on the floor to crawl, her skin is going to fall off! Do you want that to happen to her?!” She said, “Evette, it has not happened yet? And look at her, she is ready? What are you going to do about her walking? You cannot interfere with her natural growing processes. You need to let her go, so the two of you can learn her limitations. Right now, we don’t know how EB will affect her, because you aren’t allowing her to naturally progress.”
I knew that there were mommies and daddies that couldn’t hold their baby, at all; I knew there were children bandaged for most of their lives; I knew that some children using their hands and feet, however minimum, blisters and tears would occur. Worst yet, so many of the other EB babies were dying. I was witnessing at least one death a month. None of this had happened to us, and we had already determined that EB was not life threatening for us. My baby’s skin was pretty close to flawless. By the time, she was 10 months, we had not had ANY episodes.
Something about me is that it doesn’t take me long to change, once I realize the benefit. I knew that everything said to me, in that moment, was true. So, I changed. Me being a bad mother was NOT in my plans, during my pregnancy. So, I held my breath a lot; I cringed more often; I cried some, but I let my baby go. And go she did! She flourished! My butterfly had spread her wings, and she hasn’t stopped flying yet.
At the moment, I let go, and allowed God, I experienced true UNCONDITIONAL LOVE! What a wonderful feeling. Fear is a horrible monster that wants to own you, and you have to rid him ASAP. Fear changes lives; hampers lives; and destroys lives.
To learn more about EB, I would encourage a visit to Sue’s blog page. She also created the FB support lounge.
Our song: Just the Way You Are