Alex's doctors warned me that I should not go on the Internet to do research on TSC, but of course I did it. Everything I read painted a very serious picture. I have learned that people with TSC do not live for more than 35 years and that this is one of the leading causes of epilepsy and autism. It is also very common for people with TSC to have an intellectual disability, and we soon learned that Alex also had some,
PLUS: 17 Positive Habits That Will Change Your Life  I've always been a freak-type person-control 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 underwent brain surgery at the age of 8 and she must have an annual MRI to follow tumors in her brain, heart, kidneys, liver and eyes. If something starts to develop quickly, we need to act quickly, which sometimes means more surgery.
PLUS: 5 Simple Ways to Make Your Next Doctor's Visit More Productive
An Escape When Necessary
Have a Kid Who Is So Seriously Ill – Alex's Life Has Always Been filled with doctor's appointments, scans, medications and surveillance – it's easy to overlook your own needs. But soon, I decided that I would not stop running. The race allowed me to escape the TSC for a little while, and the fact that these endorphins got off the ground helped me feel like I had more than control over an otherwise uncontrollable situation. (If you are over 40 and starting to run for the first time, here are 8 things you should know.)
Although I continued to put on my sneakers, I had to take a break from the triathlons for a moment. It was too difficult to manage taking care of Alex. That changed in the fall of 2010. A friend told me about an indoor triathlon and I decided to go there – and I was the winner in the group of women over 40! In the following June, I signed up for an outdoor triathlon and again ranked first in my age group. I was addicted. (This 87-year-old Ironman triathlete is also a nun and is very inspiring.)
Shortly after, I decided to do my first Ironman. A gang of my friends are registered to race in Chattanooga, TN, which is a few hours from my home in Georgia. I ranked fourth this year in my age group. Since then, I have done four Ironman and I plan to do the Ironman in Chattanooga later this year.
Some people might be wondering how I can find the time to train and participate, and it is true that it is not always easy. But I do most of my training while Alex is at school, and my coach knows how to schedule Alex's school meetings and medical appointments (some of which are out of state). I do my long workouts, like bike rides, weekends, when my husband is with Alex. He has been a perfect partner, helping me make sure that Alex gets the help she needs while allowing me to take the time I need for myself. -even. When I go out of town for my shopping, it's him who makes sure that Alex arrives at the school and therapy appointments and takes his meds. He knows that running, cycling and swimming has made me a better, healthier mom.
Before your run, do this essential warm-up:
Over the years, I have met many other parents of children with TSC, thanks in part to to my involvement with the Alliance of Tuberous Sclerosis. (I sat on the board of directors, chaired my local and led a fundraiser that raised nearly $ 1 million.) I had the chance to rub shoulders with other families who deal with TSC, but I've noticed that many parents are struggling more than me. Many have panic attacks or face depression. (Here are 9 surprising symptoms of depression you should know.) Although I really feel overwhelmed at times, things never seem so bad after a run, and I come home feeling almost stress-free.
I really believe that running is my drug; it's my antidepressant. Physical activity counts a lot, but continuing to compete has also helped preserve my own identity. During a race, I am not a mother with special needs; I am the athlete Reiko
Keeping children (and parents) healthy
Alex is 19 years old now. At school, she works in a kindergarten until the first or second year, depending on the subject. At the same time, she is rather athletic. She loves the bowl, she can bowl from 160 to 180! She can play tennis a bit, she learned to go cross-country skiing and she loves to pull hoops. She also loves music, whether it's Katy Perry, Kelly Clarkson or Taylor Swift, and she enjoys being in a performing arts class.
PLUS: What is it to become the caregiver of his mother
Mom, I want to do everything I can to defend all people affected by TSC. Of course, fighting the disease itself is a top priority. In addition to my work with the Alliance for Tuberous Sclerosis, I am the ambassador for the clinic at the TSC Clinic in Atlanta, at the Scottish Rite Children's Hospital. Every March, in recent years, I have been to Capitol Hill to visit members of Congress to ask them to support TSC research. Funding is really crucial to finding better treatment options and possibly a cure.
At the same time, I want mothers with special needs to find something that they like. For me, it's running, swimming and biking. For others, it may be walking or yoga or whatever, but finding a way to carve out a space for oneself. When you are happy and healthy, you can be better for the people who depend on you.
Alex knows I run, swim and ride a bike. She has limited expressive abilities but when she comes to my races, she always cheers. I do not think she understands winning or losing, but she always smiles and closes her eyes when I pass it. She is always happy on race days, and that makes me very happy.