Our first real argument as a married couple, expecting our first child, was about climbing. More specifically, climbing at Climb Nashville (CN).
My husband Nick started enjoying the sport and was steadily spending more time at CN. I was at home, 6 months pregnant, and not in a position to boulder. The argument was lit by my fear that once our baby arrived, Nick would be spending all his free time at the gym, and I’d be taking care of a newborn by myself. Nick’s fear was that once we were parents, he wouldn’t have time for the hobby he had come to enjoy.
Put simply, we were both scared.
Little did we know, our son’s birth would put our fears into a different perspective. In September 2012, our son Uriah was born. And he was born with Down Syndrome - a third copy of his 21st chromosome. It’s hard to fathom that one moment can change the trajectory of your future, but it can.
Uncertainties existed regarding our son’s health and development, because over half of children born with Down Syndrome have major heart conditions and most have significant developmental delays. Truth be told, the down right awesome diagnosis took us by surprise, but we were able to accept and prepare for his birth the weeks leading up to his arrival.
We just weren’t prepared for the second diagnosis.
As a 14 day-old infant, our son was diagnosed with Transient Myeloproliferative Disorder (TMD) - a transient leukemia condition that we didn’t even know existed, and is only found in a small percentage of those who are down right awesome. TMD is a temporary blood condition where unstable blood levels reflect that of leukemia. Within three to six months, the blood levels generally self-regulate without the need of chemotherapy or other intervention. However, those diagnosed with TMD are at greater risk of acquiring acute leukemia before the age of five.
This rocked our world, again.
The first several months of Uriah’s life, we were on lockdown. We lived in the shadows of the public, avoiding people and germs. Because Uriah’s immune system was suppressed, the common cold could reap havoc. The flu or croup could kill him. We kept to ourselves, declined company, and washed our hands. A lot. As we gave time for his blood to stabilize, we chose the places we ventured very carefully.
And one of the first places we took Uriah was Climb Nashville. I know- an indoor climbing gym is typically not the most sanitary place that comes to mind.
But strategically, we would travel to CN on weekday mornings, soon after the early birds had left and long before the after school/work crowd arrived. We would set up a Pack-N-Play with a few toys, position Uriah so he could see us, and we would boulder. Uriah had a great disposition as an infant and very seldom cried. His time in the gym was also a great tummy time motivator because he loved looking up to see climbers. The Pack-N-Play also served as a barrier to others, decreasing his exposure to physical contact and germs.
It became our new normal.
And the climbing community’s response was amazing. On several occasions, the climbing staff helped set up the Pack-N-Play and checked on Uriah as they made their rounds throughout the gym. Only positive and encouraging comments have ever been made to us from fellow climbers. We also found much needed community as we became acclimated to parenthood, considering several climbers are parents themselves.
The climbing community’s impact continues to expand beyond the gym.
Friend and fellow climber, Cait Miller, was the first person outside of family to watch Uriah during his recovery from TMD. Now Cait serves on the Down Syndrome Association of Middle Tennessee’s (DSAMT) board, helping advocate and plan services for those who are down right awesome.
Former CN climber, Rachel Zoeller, was Uriah’s first Physical Therapist at Vanderbilt’s Down Syndrome Clinic, working with Uriah every other week from 8 weeks old until his first birthday.
And when Cody Roney, current Executive Director of the Southeastern Climbers Coalition (SCC), caught wind of Uriah’s diagnosis six weeks after his birth, she immediately connected us with another climbing family who also has a down right awesome son. Our friendship with the Reyes family has been a huge blessing and encouragement, and we finally got to meet their son during the Triple Crown Bouldering Series last year. Horse Pens 40 is their stomping grounds.
If there is one thing we have learned since becoming Uriah’s parents, it’s that community throughout life is important, especially during unexpected or challenging seasons.
And the climbing community is top notch.
That’s why we wanted to make a special effort to invite the climbing community to join Team Uriah for the Down Syndrome Association of Middle Tennessee’s (DSAMT) annual Buddy Walk. The event takes place on Saturday, Oct. 31st from 8am-1pm at Centennial Park here in Nashville. You can swing by and stay for as little or as long as you are able.
The walk simply provides an opportunity to come together and celebrate those who are down right awesome.
There are several ways to participate. You can officially join "Team Uriah" by visiting www.teamuriah.com (though registering doesn’t obligate you to attend, it simply puts you on the roster). You can also help spread the word and/or make a donation.
The proceeds from the walk benefit programming and resources provided by DSAMT, one of the largest organizations coordinating support and programming for those with Down Syndrome and their families.
Uriah’s good health is one of many things we’ll celebrate at the Buddy Walk this year. His blood levels have remained balanced, his heart has no significant defects, and he’s hitting milestone after milestone both developmentally and physically. We’ll also be celebrating his all time record for a dead hang (12 seconds).
Our son may have an extra chromosome, but he’s on his way to becoming one hell of a climber.
- Dara Bacon, Climb Nashville member, Mother of Uriah Bacon and wife to Nick Bacon, a Climb Nashville member and Mobility Instructor