In honor of the upcoming National Epidermolysis Bullosa (EB) Awareness week, we wanted to share this great piece from our friend, Rachael Wrobel about how her mama mothered her well, even despite the challenges of EB.
Epidermolysis Bullosa (EB) is a rare genetic condition that is characterized by extremely fragile skin. There are several different types of EB, but the commonality is skin that easily blisters or tears due to a lack of protein that helps hold the skin together. (ebresearch.org. debra.org)
THANK YOU, MOM!
Thank you for never “babying” me!
As the school years began to progress (just like all kids) I began to push boundaries only I TRIED using my disability as the excuse. “Mom could you go grab me…. my feet hurt” as I sat on my ass watching TV. However, she knew when I actually wasn’t feeling well versus when I was just being plain old lazy (damn that motherly instinct). If she knew I was bluffing she’d look at me and kindly say “you have two feet and they’re fine get up and use them.” To some parents in the EB community, this may seem harsh but it’s actually been helpful. It made me stop using my disability as an excuse and stop feeling sorry for myself and that I am just as capable as my twin sister who is unaffected. This was probably the first baby steps of teaching me to become independent even though I have EB.
Thank you for letting me get hurt!
I know this may sound crazy to some people, why would a mother let her child get hurt? Basically, she decided that she wasn’t going to let EB stop me from being a child knowing my “risk factor” for getting hurt was much greater than my sister. Such things as running on the wood floor meant falling and tearing the skin off my nose, elbows and knees; attempting to drive a four-wheeler (failing miserably) concluded in flipping myself off and tearing up multiple extremities at my aunt’s house; sliding down the stairs in a sleeping bag at my tenth birthday sleepover because all of my friends were doing it, which (thankfully) only resulted in a blistered elbow. All of these situations provided me with a chance to experience childhood and also learn where my boundaries were. Now as an adult I typically (not always) weigh the risk of injury versus the reward of accomplishment. Is achieving this goal or doing this activity worth the risk of getting hurt?
Thank you for allowing me to make medical decisions!
Having a life long chronic disability takes away A LOT of control of your life. Every day I wake up not knowing how long it’s going to take me to get up, how much pain I’ll have to push through, how much energy I’m going to have without the help of caffeine, etc. All of these depend on my disability that I have very little control over and I can’t even express how frustrating this is! The little control I do have is deciding what treatments I get, when I get them, and how often I go to the doctors. This actually started from a young age because my mom allowed me to make these choices that were ultimately affecting me directly. When I was around ten years old my endocrinologist wanted to put in a feeding tube because I was “too small” in both weight and height. I looked at him and I said “so what, who cares?” He looked back at me baffled and then at my mom who shrugged her shoulders and replied “it’s her choice.” A little history on my extended family both of my grandmas were 5′ 2″ or shorter, but what’s wrong with being petite? I’ve never regretted the decision to NOT get a feeding tube. I also made the decision at 16 to stop having hand surgeries because the recovery took forever and the pain was excruciating! Parents want to do everything to protect their children and “do what is best for them” but eventually these children grow up and need to know how to make these difficult decisions on their own.
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Written by: Rachael Wrobel
Rachael Wrobel is a sweet and sassy 30 year old from Michigan who works full time providing respite care to developmentally disabled adults. She graduated from University of Michigan with a bachelor's degree in Children and Family Services. She also has a rare genetic skin disorder called Epidermolysis Bullosa (EB) but she doesn't allow that to stop her from living a full life. In her free time she enjoys hanging out with friends, bowling, and traveling.
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