Day 11 of Blogging for TSC Awareness Month
By guest blogger Andrea Hubert (Willis, Michigan)
Everyone has their own story to tell when dealing with TS. I was too young when Ricka was born to remember how things all went. I only know them as related by our mom. Ricka’s TS seems to be a random genetic mutation. However, that didn’t mean anything when our younger brother began having seizures at the age of 24. It took many months and several neurologists before they could figure out what was wrong. Finally someone ordered genetic testing, and he doesn’t have TS. He has an unrelated seizure disorder caused by something in his brain that was triggered by the long term use of Ultram (tramadol) for serious back pain. No one tells you that a potential side effect of the medication is seizures, do they?
So, back to Ricka. She is very severely affected by TS, with autistic tendencies, a mental age of about 15 months, and lots of different kinds of seizures everyday. Both of her hips and her nose have been broken. She’s had more stitches, staples, sprains, bruises and bumps than anyone else I know. She used to be able to walk, but is now too scared. At school they called her “the escape artist.” She learned how to open doors, and she was so quiet they eventually had to put bells on all the doors in her building. I think at one point, she wore bells so they could always find her. Thankfully, she has never disappeared when I was in charge of her.
For me, life with Ricka is just my normal life. It’s what I’ve always known. With only 18 months between us, I was too young when she was born to have learned much about life without her. The things that I’ve learned when dealing with TS have kept me on my toes as I go through my own health problems, back surgery, and further treatments. I know when to fight and when to stop. I know to always be ready for anything. As a child, I always kept a bag packed with enough materials to keep me, Ricka, and our brother entertained for up to several days. We never knew when we’d be headed to the hospital, and there wasn’t time to waste gathering stuff to do. We also didn’t know when someone could come pick up my brother and me, so we had to be ready to stay at the hospital too. Advances in technology have made it so much easier. My laptop, Kindle, an iPad with movies on it for Ricka, snacks, and a charger for everything is enough for us now.
When we were young, before my brother was born, Ricka was in the hospital so much that I was allowed to walk around the hospital alone pretty often. Nurses and other staff members recognized me. My mom is still proud of the fact that I never got lost and could direct other people around. Maybe that’s one of the things that helped shape my good sense of direction now. Who knows?
I grew up pretty fast thanks to Ricka’s TS. I have always been her caretaker, and at nineteen, I became one of her guardians. It’s a scary thing to be in charge of someone else, but even more so when that person is your sibling, close in age, and so medically needy. Today, almost nothing freaks me out because I’ve probably seen it in my journey with Ricka or the other folks that I’ve been lucky enough to work with doing care for families. There are positives and negatives to growing up fast and seeing so many things. Some days, positives outweigh the negatives, and some days it’s the other way around.
I don’t know what the future holds for Ricka. I do know that she will always be loved and cared for at home by people who love her. I know that if something happens to our mom, I will be solely responsible for her. My brother lives nearly 2000 miles away and doesn’t want to be involved anyway. I know the importance of planning ahead now.
- State-Of-The-Art DNA Sequencing Technique Reveals Cause Of Severe Childhood Epilepsies (medicalnewstoday.com)
- High-fat ketogenic diet helps 4-year-old keep seizures at bay (gazettetimes.com)
- Genetic mutation causing port wine stain birthmarks discovered (telegraph.co.uk)