Good morning! It is a beautiful day here in Jefferson, MA, and despite the odds, I am grateful. My oldest daughter and I spend last night in the psych ER. We came home at 2am and it’s a long story, of course. I have these amazing kids who are my heroes with what they’ve been through mentally and physically. They are true survivors, blessings, given to me from above to guide and teach yet, so often, they are guiding and teaching me. My second oldest daughter wrote this little essay on what it’s like to have Tuberous Sclerosis Complex and she said I could share it, so I am going to paste it in here…
What is it Like Having Tuberous Sclerosis Complex (T.S.C.)
Have you ever thought to yourself, “Why are my siblings so weird?” I ask myself that question all the time, but I always have an explanation as to why they act the way they do. You see two of my siblings and I have a disability known as Tuberous Sclerosis Complex (or TSC for short). This particular disability causes tumors on organs such as the brain, heart, lungs, and kidneys, it also causes seizures (Epilepsy) but TSC is different for everyone who has it. For me it causes seizures, tumors on my brain, and to have an angiomyolipoma on my kidney (Angiomyolipoma Is basically a tumor in my mind). The tumor on my brain has been stable for years but my kidney has not been so lucky. I had to have surgery on it once when I was around eight years old and again when I was thirteen going onto fourteen. Currently I am fourteen.
Only my closest of friends know I have TSC. I think that if you were to tell my other friends that I have TSC most would say “I always knew she was a little off”, In spite of all that I’m as normal as a teen today can be. I think it would be fun to meet someone outside my family with TSC but sadly, other than my siblings I’m the only person I know with TSC. TSC is complex and confusing. For one thing when I am older I’m going to have to be careful with sex because I don’t want to pass my disability to my child because TSC is genetic. I got TSC from my father. I was lucky enough to find out when I was young, my father not so lucky. He discovered he had it in his mid to late thirties. I remember having a conversation with my mother about his parents keeping from him.
When I was young my parents had a hard time with my siblings and my seizures. They went through a lot of pills and even put my on a special diet to stop the seizures but nothing worked until at last they took me off the diet and I starting taking Felbatol and load of other stuff and they stopped! I had struggled with learning and reading. I don’t remember much of this, all the things I just told you are from stories my parents would tell me. Let’s just say I’m a C average student and I’m reading at least two years above my grade level. It’s hard knowing I went through all this and don’t even remember it, but that is probably a good thing. My mother is always telling me how I would scream my head off in the car. But other than that I was a good kid (in my opinion I’m the favorite).
Someday I plan on shouting to the heavens “I HAVE TUBEROUS SCLEROSIS COMPLEX!” (in public) which probably wouldn’t matter since I highly doubt anyone (except the teachers and staff) would have any idea what I was talking about. Having TSC is hard but I’m fine with it provided with the knowledge that I have a loving family and a hope for a cure someday in the future.
thank you daughter. I love you.