I am a mother of a special needs child. My 10 year old son, Adam, has centronuclear myopathy. He struggles with fatigue every day. This story is about how Adam and loved ones inspired each other to improve our fitness for a cause.
I am now in my 40's and my physique and my energy were slipping a little year after year. As many mom's of special needs children know, sometimes our own health and medical needs get put on the back burner. Despite her own health issues, working full time and taking care of her two children, my sister, Stephanie, had finished several of the Danskin triathalons in Wisconsin with some of her friends. She kept encouraging me to try a triathalon for myself. I kept ignoring her suggestion since I am not much of an athlete. Well, I finally thought, 'Why not give it a try? If Adam has the strength to make it through his day with tiredness, I can give this triathalon training a try too.'
So, I started to train very slowly beginning in January. I started a program called 'Couch to 5K'. Using an app on my phone, this program helped me to build up very slowly into running. It uses a combination of running and walking to increase running skills little by little. This slow approach and simple method of using my smart phone really worked for me.
I slid very slowly into the racing scene. The first race I did was a gentle indoor triathalon at a local YMCA that focused on time, not performance. For example, it was a 15 minute swim in an indoor pool, a 30 minute ride on a stationary bike and 20 minutes on a treadmill. I thought, at least I have no way to crash on my bike with this plan seeing as it's stuck to the floor. This was a great way to ease into the idea of a larger, outdoor triathalon. It was so cute to see my husband Patrick and Adam cheering me on holding up a sign in front of my treadmill at this event in March.
My next step was to participate in a triathalon relay, where multiple people work together to complete the swim, bike, run that's required to complete a whole event. This would give me the some experience with an outdoor triathlon. I found a lovely partner with a longtime friend of the family in Adam's youth mentor, Molly. Molly Smith has been a wonderful part of our family for about 8 years. Molly served as a mentor to Adam, starting when he was 2 1/2 years old. Molly went through a special training course offered through a local disabled advocacy group called Pathways. She has come on a regular basis since then. As a mentor, she served as a companion and playmate and offered me some respite. Molly learned about Adam's special health needs and was able to lend a hand with these tasks.
As Molly got older, she transitioned into being a paid helper for Adam. She 'shadowed' our son at the local town summer camp. She was responsible for making sure he stayed safe, hydrated and did not get overly tired. She also helped with modifying activities that fit with his abilities. Molly also started doing some babysitting for us. This involved learning how to do many aspects of Adam's special care including putting on his scoliosis brace, using his feeding tube and putting him on his ventilator at bedtime. Molly showed great skill and responsibility with these tasks. Molly is very smart, reliable and has good judgment but best of all, she is just plain lovable.
On July 17 Molly and I, joined up to form 'Adam's Angels' to compete as a relay team in a local sprint triathlon and to raise funds for muscle disease research. I swam the 1/2 mile and biked 10 miles and Molly completed the 5K run. We had loads of fun and raised over $400 for the Joshua Frase Foundation. This increased my confidence about doing a whole triathalon by myself.
Soon after that, Stephanie raced in Wisconsin in August this year. I wasn't able to attend or compete with her because it was the same weekend that we were sending Adam to MDA camp.
During her race, Stephanie wore the t-shirt she got at the MTM-CNM family conference in Minnesota. She said she chose the shirt because as she raced she thought about Adam and others like him to give her energy throughout the event.
On September 11, I participated in the Danskin Women's Triathalon in Sandy Hook, NJ (with New York City visible in the distance). It was the culmination of years of encouragement from my sister, inspiration from Adam and confidence from the relay that I did with Molly. My sister flew in from Chicago to cheer me on. I successfully completed the 1/2 mile ocean swim, the 10 mile bike ride and the 5K in 2 hours and 10 minutes with my sister Stephanie cheering me on the whole way. Crossing the finish line was an emotional triumph.
With Molly as a teammate and Adam and Stephanie as my inspiration the triathalon was a huge success. My son taught me how to keep going in the face of fatigue. My sister taught me that it's important for moms to make time to do things that will make them healthy and feel great about themselves. I made fitness gains but more importantly, I feel proud and strong. Before my race even began, I had already won. Thank you Steph, Molly and Adam. Now, if your reading this and thinking to yourself, 'I'm not much of an athlete ... ' consider giving it a try.
Back to Our World