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.
SHARE IT!
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.
Related Posts
Acne Positivity – Coping Toolkit!
When we feel overwhelmed or stressed, it can be tempting to tell ourselves (or each other!) Just relax, calm down! When we are stressed or freaking out, that is easier said than done. That’s why preparing a “coping tool kit,” a set of strategies for dealing with stress can be really powerful.
Acne Positivity – Stop that stinkin’ thinking with empowering and encouraging thoughts!
Do you freak out when you break out? I know I have! It is natural when we have a break-out to look in the mirror and think things like “These pimples are gross!” “I hate my skin!” “Things are never going to get any better!” Even though it is natural we think this way, it is harmful too.
Acne Positivity – don’t pop those pimples!
Stop picking, popping, poking your pimples!
I know, it’s sort of like eating the whole bag of potato chips…we all know we aren’t supposed to do it, and yet, the temptation is SO STRONG! So…how do you stop?
Start with choosing an alternative activity!
Heart + Sole Walk and Family Festival Recap
We had so much fun at our first annual Heart + Sole Walk and Back To School Family festival! We want to thank all of our sponsors and everyone who came out to support our mission to make the world a more kind and understanding place for those with skin conditions.
Acne Positivity – Parental validation
As a Child Life Specialist working with teens and kids who have special skin, there is one question I get A LOT. “How do I talk to my teenager, when they tell me they don’t like how they look?” Parents are so worried that they will say the “wrong thing.” And truthfully, I have spent …
Skin Discovery Box – Film Premiere
We had an amazing time celebrating the launch of our brand new SKIN DISCOVERY BOXES, a very special collaboration with our friends at CeraVe! CeraVe’s tireless pursuit of therapeutic skincare for all is truly more than skin deep and we couldn’t be more thankful. We celebrated in style thanks to our friends at Star Cinema …
Texas Children’s Vascular Anomalies Program
A Children’s House for the Soul believes that it takes a village to support a child and family impacted by skin disease and birthmarks and that we are all better together.
Open House – Ribbon cutting to bring a children’s house home
Open House and Ribbon Cutting/Bring A Children’s House Home: On June 5th we began a very exciting new chapter of our A Children’s House story in the form of opening up our new beautiful space to serve children and teenagers with skin conditions and birthmarks and their families. This space includes a salon, a library & craft space, a teen room, and more! We also debuted our incredible new custom mural from up and coming local artist Eli Pallaert.
Trivia Night – Event Recap
Our Family Trivia night was oh so much fun, and a huge success! We had so much fun getting to reconnect with all our friends and enjoy some laughs while snacking out on pizza and snowcones!
growing up with a vascular birthmark
In honor of Vascular Birthmark Awareness Month, our childlife specialist Lindsay O’Sullivan had a great conversation with Jose about growing up with his special masterpiece skin!
Ichthyosis Awareness month with Ally
In this interview, Ally shares about her experiences growing up with Ichthyosis. Ally shares how: Meeting other kids with special skin can help kids to feel less isolated and give them a very special sense of comradery and understanding. Parents don’t have to do everything perfectly to be the perfect parent for their child and …
Mother’s Tea – Event recap
What a wonderful time to relax, enjoy friendly company, and share their hearts on being a mama to a kiddo or teen with special skin. It was truly so special! These mamas were made a masterpiece!
A Message about Vascular Birthmarks
Vascular birthmarks are very common in children. These birthmarks are made of blood vessels in the skin and can occur anywhere on the body. They may be pink or red in color, blue or purplish, flat or raised. Since they are vascular, sometimes they will feel warm to touch and may change in color with …
2021 Capital Campaign Update
We have some exciting updates about our Capital Campaign! Learn about our short and long term plans for our own space.
You Can’t Teach What has no history
You Can’t Teach What Has No History “This is how much God loved the world: He gave his Son, his one and only Son. And this is why: so that no one need be destroyed; by believing in him, anyone can have a whole and lasting life. God didn’t go to all the trouble of …
Ectodermal Dysplasia Awareness
In honor of Ectodermal Dysplasia Awareness month in February, we sat down with two of our dearest friends Zach and his mama Susan! Zach is an avid golfer, an Aggie, and is affected by Ectodermal Dysplasia. Susan and Zach teach us about ED and the importance of finding community. They also had helpful tips and …
How to Conquer Alopecia Universalis
Join us for a fun and inspiring interview with this incredible lady Ana Maria! Ana Maria Triana is 15 years old and the author of How to Conquer Alopecia Universalis. Ana Maria gives heartfelt advice, shares wisdom beyond her years, and will leave you feeling full of compassion and confidence. A Children’s House for the …
Alopecia Areata – A Mother’s Journey
I am fortunate enough to be Mama to three little girls. Shortly after my eldest daughter’s first birthday (about 4 years ago) I noticed her hair was thinning. I was told by many it was just typical baby hair loss until it just couldn’t be described at “typical” any longer.
Hand-washing causing dry, cracked skin? Here are some tips from our Friend, Dr. Meena!
After the last several months of this pandemic, I think we are all well-versed in how important it is to wash our hands so that we don’t spread germs. But with all this hand washing and sanitizing, dry skin, eczema breakouts, and contact dermatitis have become even more troublesome. What can we do about it?
Back to School? Think Balance. Doctor’s Orders.
Join us for a quick and very insightful video interview with Dr. Alana Kennedy-Nasser as she shares with us how to keep kids safe as they go back to school in-person and how to keep kids developmentally “on track” as they attend school virtually.