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.