Kayleigh’s Distance Challenge

Just over a year ago, Distance Challenge alumni Sandy Williamson submitted her story through our “September to Remember” contest and won two free entries into the Decker Challenge. When Sandy and her daughter Kayleigh decided to Dare the Distance together, nobody could’ve predicted where the journey would take them. With one race to go, Sandy shares their remarkable story with the ARC.

Sandy and Kayleigh

Sandy and Kayleigh
Photo courtesy Sandy Williamson

In April, my daughter and I travelled to Galveston for the Diva 5K. It was our first test to see how Kayleigh would handle a race with a strict cut-off time. She finished under the required time and the next week we started training for her first half marathon. Kayleigh has ITP and Graves’ Disease, and two weeks later her platelets hit a critical low of 15. It was a life threatening level. Even with steroids and a platelet transfusion, they did not increase so the decision was made to remove her spleen. The surgery normally takes 45 minutes to an hour, but in Kayleigh’s case it only took 20 minutes. Normally, they keep a patient for 24 hours, but she was released 5 hours later. That’s when I knew I had Wonder Woman for a daughter.

The next week her platelet counts were on the rise, but my mom, who had just been diagnosed with Vascular Dementia, fell in the backyard and fractured her pelvic bone. Kayleigh and I trained for the first race in the Distance Challenge (the 80’s 8K) while mom was in rehab for three weeks. Kayleigh started her swim training for Special Olympics while mom’s health continued to spiral out of control. Normally, Kayleigh would compete in the 25-meter freestyle, backstroke, breaststroke and relay, but with her added training she decided to give the 100-meter freestyle and 50-meter backstroke a try.

In September, my mom was diagnosed with Alzheimer’s Disease. Then we learned that after 8 years of battling ITP, Kayleigh’s platelets were finally at a normal range and her Graves’ Disease was officially in remission. She was removed from medication and no longer had to go for monthly blood work. Oh… and she totally knocked out 1,600 meters of swimming without any problems!

October brought Kayleigh’s first 8K, which not only proved her determination for finishing, but also my absolutely ridiculous need to control her speed (which she rightfully rebelled against right there in the middle of the course). The next week she went to College Station to compete in a state swim competition. Then my mother found the keys to her car and disappeared. She left at one in the afternoon and the police found her at 9:30 that night in Luling.

Kayleigh and Gilbert Tuhabonye

Kayleigh and Gilbert Tuhabonye
Photo courtesy Sandy Williamson

Two weeks later, Kayleigh completed her first Run for the Water. That race introduced me to a new way of seeing my daughter. She was no longer the little girl I needed to protect. By mile 8, she was in excruciating pain but refused two offers to be driven to the finish line. We unofficially finished the race since the finish line had been dismantled but with tears in her eyes, she finished – oh and she perfected the art of flicking her hair timed perfectly with the finish line! She is a true DIVA!!! I have no idea where she got that from – definitely not me. It seems that with each race, more and more of her unique running personality emerges.

After all the pain she experienced during that 10 miler, I opted to pull her from Decker. That was hard but we still showed up to volunteer and ran the Brown Santa 5K. That’s about the time we started working with RunLab (Kayleigh is on the Elite Team). OH MY WORD, I LOVE THEM. In the past, doctors have turned us away. They would not accept my daughter as a patient due to two words – Down Syndrome. Dr. Davis loved having the chance to work with her. NEVER has a doctor had so much faith in my daughter’s ability, and the entire RunLab team leave me humbled with each visit.

By the end of the year my mother was admitted into a long-term nursing home, and in January it was time for the 3M Half Marathon. After seeing the bling, I had to be at that start line. Friends offered to bring Kayleigh to the finish line so she could experience the energy of it firsthand. Without training and while carrying an extra 15 pounds (oh yeah, stress does it to me every time!), I finished at a 13:33 pace – but I finished.

That brings us to the Austin Half Marathon. After a year of training, a year of ups and downs, and two months of amazing work at RunLab, Kayleigh is taking on her first half marathon. This week has been a blur. She has been mentioned in the paper as one of the 20 things to know about this year’s Austin Marathon & Half Marathon (check out #12), and we have been approached by a local TV station for an interview. She is determined, and along with all the training for the race has come a LOT of training in the science and timing of how to properly flick one’s hair.

I am sure you are wondering WHY on earth I’m sharing all of this… and it’s because of this running group. This training has been such an amazing experience for my daughter and me. It provided an outlet at one of the most difficult times of our lives. It brought us closer together and taught one overbearing mother how to see her daughter as a young woman and not as that little girl that needs to be protected from everything (including imaginary monsters). It was Muna meeting up with us during that last mile of the 80’s 8K to reach the finish line with Kayleigh. It has been the continual words of encouragement from Iram. It was all the runners who high fived Kayleigh during Run for the Water, and the ones who ran part of the way with her. It was all the people along the hike and bike trail who stopped and yelled out her name during the last difficult 2 miles of that race. It was so many words of encouragement while we volunteered at Decker, and it is how accepting and encouraging RunLab has been.

We would have NEVER known this depth of support and community had it not started with an idea. A simple idea from Iram, when he awarded us those two entries into the Decker Challenge. The idea that someone as beautifully unique as my daughter, a young woman with Down Syndrome, could complete a half marathon. His idea created a dream for my daughter a year ago. He, Muna, and others never once made us feel like we did not belong — completely the opposite. I have completed three previous Distance Challenges. I have every one of those jackets and greatly cherish them. But this year, well, this year is the first time I signed up and did not earn it, and it’s the best jacket I ever lost. This year, what the Austin Runners Club offered my daughter has been far greater. You offered her strength in knowing who she is. This amazing runner that belongs to an amazing community. Thank you to each and every one of you. We will see you at the back of the starting line along with a few of our friends, all working together to support Kayleigh in becoming the first individual with Down Syndrome to finish the Austin Half Marathon.