It’s hard not to notice Gracie rolling up to you; from her pink sparkly wheelchair to her fashionably mismatched outfit – Gracie’s loudest accessory is her smile.
I noticed Gracie on Friday afternoon at myTeam Triumph’s 4th annual Triumph Mile. Hundreds of people we arriving to register with our team and from across the street a girl, who I later learned to be Gracie, caught my eye. Having a daughter around the same age as this girl across the street, I was struck by the confidence that she exuded; wheeling her chair among all of the people and parking herself exactly where she needed to be with the myTeam Triumph crew. Talking with our crew members and other Captains, she appeared to be within her element of comfort. I lost track of that girl as the Triumph Mile started but was reminded of her the next morning at breakfast when my oldest daughter started talking about the “girl with the cool wheelchair” and I remember making a mental note that I needed to find that girl at the race.
Race morning of the Bellin Run was quite a rush. Being my first Bellin experience and knowing that I would be writing an impact story from this race, I made conscious effort to take in all that was happening. My head was on a swivel; watching, listening, making mental notes; how in the world would I be able to find one story to tell from this race with all the spectacular things happening around me? …and then I saw it. Nope. It wasn’t Gracie…I saw Gracie’s mom.
As the race clock hit 43 mins the announcer exclaimed, “AND HERE COMES GRACIE!! The FIRST myTeam Triumph team!!”. There was a collective gasp by all of the mTT volunteer & family waiting in our staging area. Gracie’s team was FLYING into the finish and the woman standing behind me quickly fumbled with her phone and darted toward the finish line. With a time of 44 mins, Gracie and her team of Angels crossed the 41st Bellin Run finish line and while the myTeam Triumph family was high-fiving and back-slapping each other, I couldn’t take my eyes off of Gracie’s mom, Sarah. She just stood there, hand over her mouth, tears running down her face. I will never know what it is like to walk in Sarah’s shoes and her day to day struggles. But as a mother, I knew exactly what that expression on her face meant and I knew that I needed to learn her story.
“Gracie wasn’t always in a wheelchair,” Sarah said. “She was in an accident on June 7, 2014 at a neighborhood party.” Playing with her friends on a hammock, Gracie fell off with her head landing on the metal frame of the swing. Knowing Gracie was hurt, Sarah, rushed her daughter to the ER only to find out that Gracie had a severe concussion. “Having run in the Bellin Run the year before, Gracie was supposed to run it again just a few days after her accident but her doctor advised against it.” For the next 6 months, Gracie suffered from headaches, had trouble concentrating and it just got worse and worse. Sarah was now taking Gracie into the ER on a regular basis. Every time they went, doctors told her that all tests were normal but Sarah knew that something was seriously wrong with her daughter. After refusing to leave until someone figured out what was wrong, a nurse decided to hook Gracie up to a EKG holter monitor to check her heart. Finally, a test that confirmed Sarah’s intuition; something was wrong. By February of that year, Sarah finally had a diagnosis. When Gracie hit her head on June 7th, the impact affected her brainstem and she developed a condition called POTS which was now affecting her heart rate and blood pressure. With an abnormally high heart rate and dangerously low blood pressure, Gracie’s body was in ‘cardio mode’ 24 hours a day.
Sarah watched her 9 year old daughters’ health decline from that point on; Gracie was rapidly losing weight (20lbs within a few months) and losing basic function. By February, Sarah’s Bellin finishing, gifted and talented student lost all mobility and now struggled to read and to write. “She struggled for everything and she depended on me for everything”, Sarah explained, “I had to put her on and off the toilet, shower her and I would sleep in the living room with her to make sure she didn’t stop breathing”. Taking care of Gracie became “all consuming”. Sarah went on, “Plus, I have two other kids at home. I didn’t know how to manage splitting up the time between them. It wasn’t fair to the other kids but Gracie needed me. I finally had to call my friends and ask for some help. It took a village to get through that time.” And slowly, Gracie started to get better.
Last year, Sarah’s friend told her about myTeam Triumph and about how we were looking for 40 Captains to run in the 40th Annual Bellin. “I asked Gracie if she wanted to do it and after the first practice run, she was hooked.” Gracie completed that race but needed to be taken to the ER after finishing. “With her condition, her body can’t control its temperature.” Last weekend, Sarah drove Gracie and brother Matthew out to the 41st Bellin. “Before the race, I had told Gracie that I reserved the right to pull her from the race if I thought she could get hurt.” Worried for her safety because of the rising temperature, Sarah allowed 13 year old Gracie to participate.
When I asked Sarah what she was feeling in the moment that I witnessed last weekend, she responded in a shaky voice. “When I heard that she was the first one, I was in complete shock. I was so proud of her; it was a dream come true for Gracie.” She keeps doing more and more with myTeam Triumph. She sees herself as an athlete again. myTeam Triumph was a life saver for her sanity. She is my hero.”