Ever since Ella was born I have trouble defining things as “normal.” I always feel like I have to put the word in quotation marks because I have learned that “normal” means different things to different people. For us, our life is normal…it is normal to take 2 hours to give our child a bath and change her bandages…heck, it’s normal for us to have to do bandages at all. And when I look at others who have a “normal” family and “normal” lives, well, the truth is that for us that is completely abnormal. No matter how long we live, we will never know what that feels like.
I say all this because the winter brings us as close to normal as we’re ever going to get. Ella’s skin does great in the cold weather! We have to put a bit more lotion on than usual, but other than that she looks great (don’t misunderstand…we still have her arms, legs and torso wrapped completely). Right now (knock on wood) her face is completely clear, other than some milia and light scars. So, this weekend we went to Home Depot to get our Christmas tree. Ella was beside herself with excitement. She was completely bundled up. Snow boots, pants, sweatshirt, winter coat with hood pulled up, and mittens. The only thing you could see was that sweet little face. As we were walking in I said to Joe, “Ella looks like she’s a normal kid. She’s so bundled up that you can’t even tell she has EB.”
I often wonder what it would be like to go into a store and not have countless people stare at Ella. I can see the wheels turning as they’re trying not to make their stars obvious. We used to get bombarded with questions whenever we ventured out. Everyone wanted to know why she looked that way, and most of the people knew someone who “looked just like that” and it ended up being an allergy, rash, the water, etc. If I had a nickel for every suggestion we have received by complete strangers, Joe and I would never have to work again. I don’t know if it’s because Ella is getting older, or if it’s because my approach has changed, but is seems like the questions have died down. I used to be very on guard every time we ventured out…staring everyone down who looked our direction for longer than 30 seconds. Waiting, with guns drawn, for them to ask what was wrong. Now, I just go about my business. We walk up and down the aisles talking and playing, and I barely even acknowledge those around me. If I make eye contact with someone, I just give them a friendly smile and say hello, and go on my way. I still feel the stares, but I figure if I act like everything is “normal,” then they will too. And it seems to work.
So Saturday, in Home Depot, I got a small taste of what it would be like to live without stares. To have people looking at Ella simply because she’s cute, and not because they want to know what’s wrong. She was so excited to get a Christmas tree. As we were walking around looking at all the trees, I asked her what kind of tree she wanted. She yelled, “GREEN!!!” Given that we were looking at real trees and all of them were green, I laughed, and the woman next to me laughed too. We laughed because it was a “normal” 2 year old response.
Even though Ella’s skin is different, in every other way she’s a very typical 2 year old. I wouldn’t change her, and I wouldn’t even change the stares…I have learned a lot from them. Our family is perfect…our wonderful, happy, “normal” family.