A Daughter with Tuberous Sclerosis Complex
~~By Adeline Kovae’~~
My second pregnancy was more “expected” than the first. Expected like puke is when you finish riding the fastest roller coaster ever. I was having all the fun but not paying any attention to what might result from said fun. Actually, my Princess was a “complication after ovarian surgery.” At least that is what the doctor said. (What makes doctors really think couples won’t have sex for an entire month after a minor surgery anyway? I may be a mom, but I’m NOT dead!)
When my daughter arrived, it was exciting. I now had my very own dress-up doll! But no one ever mentioned to me that not all babies are born healthy. My Princess was diagnosed with Tuberous Sclerosis Complex at the 9-month mark due to her developmental delays, “bleach spots” on her skin, and seizures. It’s been a wild roller coaster ride since.
Going up and down the hills of seizures, learning disabilities, Asperger’s Syndrome, OCD, High Anxiety Disorder, problems with balance, and a very specific diet has been amusing. Because of her issues, we had to learn Sign language to communicate with her as an infant and toddler. Many a day I found myself getting crooked looks from a server who had no idea I was signing for a refill or saying “thank you.”
Explaining the puberty loop to her was a challenge because everyone knows if a person bleeds too much, she will die. Princess has no idea of how to process anything abstract. How do you explain to a child that, NO, monthly periods are not a death sentence even though that is really how it seems? Thank God she hasn’t started her period just yet. I still have a minute or two to come up with something good! (Though I really am clueless right now!)
No cotton candy for Princess. Her diet is so regimented that to just throw something in doesn’t work. It does work, however, for gatherings since her diet dictates what can’t be there. Who knew there were delightful desserts that were lacking chocolate? I never thought it truly possible.
Princess and her grand mum
Along the ride every year the TS Alliance holds fundraising walks for researching a cure for her disease. That just means I am allowed the opportunity to show off my Princess repeatedly throughout the months of April and May with emails, posts, letters, and pictures to every person who has ever come in contact with her or anyone from our family. There are more communications sent from me than people standing in line for ride’s at Pittsburgh’s Kennywood park on a summer’s day! I am sure by now all who know me wish they didn’t!
As a teen, I loved roller coasters. Now that I’m a mom, I have a new appreciation for them. The lines are too long, too crowded, and boring; the staff is just not happy about being there and makes me pay for their unhappiness in careers; the ride isn’t always what I expect, and afterwards I sometimes feel like it’s all been a waste of time. Still, I look forward to the ride and go back as often as I can.
To help people and families like Kalani, please consider participating or contributing to Step Forward……
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