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
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.
Tips From A Teacher: Parents as partners, online enrichment and more!
What questions do you have for back to school content experts? Read on for some brilliant questions and answers from this super smart teacher mama, Lacy Cunningham, M.A.Ed.
Mental Health Matters In Our New Abnormal World – Back To School Boot Camp
Online learning can be a fun experience filled with lots of great experiences; but as humans, we were meant to interact with one another and have companionship. How can we develop ways to ensure kids stay engaged while learning in a different setting?
Preparing families who are returning to in-person learning
This year, the normal first day of school jitters will likely be accompanied by some new concerns that we have not encountered before. Lindsey O’Sullivan, Child Life Specialist, provides guidance on how to navigate these conversations with your child.
How to Talk to Children about COVID-19 and School – Back To School Bootcamp
As we prepare for school to begin, those of us that are sending our kiddos slowly back out into the world may find ourselves explaining what has changed (again) in the last few months. Dr. Chad Brandt, a therapist who specializes in anxiety in children and teens, offers us a few guideposts for talking about the coronavirus with children.
Validation Conversation – Back To School Boot Camp
Validation means to acknowledge and sometimes normalize someone’s feelings or reactions to a specific scenario. Validation continues the conversation, creates trust, and helps children communicate their truest feelings with the adults around them.
Sharing our disappointment with our kids about our tough back to school decisions
We should not shelter our children from our disappointment. While it is natural to have this desire, it is not a good idea to want to keep them from knowing that we, as adults, sometimes have “bad” (i.e. not the most fun) feelings.
Be My Own Valentine Challenge! #iwasmadeamasterpiece
In February we launched a reboot of our #Iwasmadeamasterpiece social media campaign from this summer with a fun valentines themed twist.
Happy Birthday A Children’s House For The Soul!
As part of our birthday surprise, A Children’s House for the Soul announced the launch of our public capital campaign to buy 1972 W. Dallas and renovate the space into the first ever community building dedicated to the social, emotional and spiritual support of children with chronic skin conditions/birthmarks and their families.
2020 Camp Reunion Recap
The 2020 Camp Dermadillo Reunion was a great success! We had more than 60 friends new and “old” come to Speedy’s Fast Track for a great day of go-kart racing, mini golf, laser tag, arcade games and more.
2019 Family Day Recap
Love the Skin You’re In Family Day 2019 is officially in the books! We had a great time and learned a lot and I am so grateful for the wonderful day!
Dear My Perfect, Rashy, Skin
As the month of November is upon us, I know we are all going to begin reflecting on what we are thankful for, and secretly looking towards the new year thinking of things we hope to come. I just wanted to write you a letter to thank you, Skin, for all the ways you’ve been there for me and shaped me as a person. I never really stopped to think about it before, but in a way, you have made all the difference.
Our Journey with Eczema
We are so thankful to Joyce and Leah for both sharing their story about Leah’s eczema.
How to explain Eczema by Age
While eczema can seem common, it takes on a lot of different forms. Also, many people don’t understand how much pain and discomfort can come from eczema. Here are a few ways to explain eczema to different ages.