I have always been a runner. In fact, I started running for fun when I was a graduate student. Thirty years later, I started doing triathlons. I would do races here and there but I never took it too seriously. Then, in 1999, my daughter, Alex, was born. The doctors knew right away that something was wrong.
It took nearly a year for us to get a diagnosis, and when we did it was crushing: Alex had tuberous sclerosis complex (TSC), a genetic disease that causes benign tumours to grow in the brain and on other vital organs such as the kidneys, heart, liver, eyes, lungs and skin. Although TSC is very rare—it affects one million people worldwide—it’s actually more common than Lou Gehrig’s disease or cystic fibrosis.
Alex's doctors warned me that I shouldn't go on the internet to research TSC, but of course, I did. Everything I read painted a very grave picture. I learned that people with TSC don’t live past 35 and that it's a leading cause of epilepsy and autism. It's also very common for people with TSC to have intellectual disabilities, and we soon learned that Alex had those, too.
I’ve always been a control freak type-A person, but having a child with special needs is not something you can control. I spent much of Alex’s early years taking care of her. She had brain surgery when she was 8 years old, and she has to go through annual MRIs to keep track of the tumours in her brain, heart, kidney, liver and eyes. If something starts to grow quickly we have to act fast, which sometimes means more surgery.
A much-needed escape
When you have a child who's so seriously ill—Alex's life has always been full of doctor's appointments, scans, medication and monitoring—it's easy to neglect your own needs. But early on I decided that I wasn't going to stop running. Running allowed me to escape TSC for just a little while, and having those endorphins kick in helped me feel like I had more control over an otherwise uncontrollable situation.
Although I kept lacing up my sneakers, I had to take a break from triathlons for a while. It was just too much to manage while caring for Alex. That changed in Autumn 2010. A friend told me about an indoor triathlon and I decided to go for it—and I was the winner in the 40+ women's group! The following June I signed up for an outdoor triathlon and again placed first in my age group. I was hooked.
Soon thereafter, I decided to do my first Ironman. A bunch of my friends signed up to do the race. I placed fourth that year in my age group. Since then, I’ve done four Ironmans and I’m planning to do another later this year.
Some people might question how I can find the time to train and compete, and it's true that it's not always easy. But I do most of my training while Alex is in school, and my coach knows to plan around school meetings and Alex's medical appointments (some of which are out of state). I do my long training sessions, like bike rides, on weekends when my husband is with Alex. He's been a perfect partner, helping me ensure that Alex gets the help she needs while also allowing me to take the time I need for myself. When I go out of town for my races, he's the one who makes sure Alex gets to school and therapy appointments and takes her medicine. He knows that running, biking, and swimming has made me a better, healthier mom.
Through the years I've met a lot of other parents of children with TSC, in part thanks to my involvement with the Tuberous Sclerosis Alliance. (I serve on the board of directors, have chaired my local chapter, and have spearheaded a fundraiser that raised nearly $1 million.) I've been so fortunate to connect with other families who are dealing with TSC, but in doing so I've noticed that a lot of the parents struggle more than I do. So many have panic attacks or are dealing with depression. While I've certainly felt overwhelmed at times, things never look as bad after a run, and I come home feeling virtually stress-free.
I really believe that running is my drug; it's my antidepressant. The physical activity matters a lot, but continuing to compete has also enabled me to preserve my own identity. During a race, I’m not a special needs mum; I’m Reiko the athlete.
Keeping kids (and parents) healthy
Alex is 19 now. In school, she works at a kindergarten to first- or second-grade level, depending on the subject. At the same time, she’s pretty athletic. She loves to bowl—she can bowl 160 to 180! She can play tennis a little bit, she has learned how to snow-ski, and she loves to shoot hoops. She also loves music, whether that’s Katy Perry, Kelly Clarkson or Taylor Swift, and she loves being in a special needs performing arts class.
As Alex’s mum, I want to do everything I can to advocate for everyone affected by TSC. Of course, fighting the disease itself is a top priority. In addition to my work with the Tuberous Sclerosis Alliance, I'm the clinic ambassador at my local TSC Clinic at the Scottish Rite Children’s Hospital. Every March for the past several years I’ve spoken to politicians to ask for their support of TSC research. Funding is really crucial to finding better treatment options and, eventually, a cure.
At the same time, I want special needs mums to find something they love. For me, it's running, swimming and biking. For others, it might be walking or yoga or something else, but find a way to carve out space for yourself. When you’re happy and healthy you can be better for the people who are depending on you.
Alex knows I run and swim and bike. She has limited expressive ability but, when she comes to my races, she always cheers. I don’t think she understands winning or losing, but she always smiles and closes her eyes when I pass her. She’s always happy on race days, and that makes me very happy.
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