My First Descent with Down syndrome.
There never seem to be enough hours in the day this time of year. Last week I was running between meetings at GiGi’s Playhouse Charlotte when someone stopped me in my tracks. My meeting was running late, and only because of unexpected traffic I found myself idly standing by the front door as a woman I’d never seen walked in. As I greeted her I quickly realized her eyes were filled with tears. Before any words were spoken I could feel my eyes filling too—I knew where she was. I had been there and was immediately transported to another time.
Everett’s diagnosis will forever be etched in my memory. Every single piece. I remember the exact spot in our apartment where I was standing when the hospital number flashed on my phone. I remember the long pause before the Genetic Counselor told me my first unborn son had Down syndrome. I remember the pine smell on the floor where I crumpled up trying to will myself to call my husband and family and tell them. I can see the exact outline of the dent in the wall where I threw my iPhone in utter despair. I remember the feeling of my chest tighten and my mind go to places I never thought they could.
See…I’m a goal-oriented person and always have a plan of where I’m headed. And this diagnosis was most certainly not part of my life plan.
At the time, I was an academic scientist and weekend-warrior adventurer. We lived in an old cotton mill on the banks of the Haw River outside Chapel Hill and our lives were crazy exciting in all the right ways! The reason I’m wedded to both science and adventure is the thrill of the unknown. The sense of discovery and not knowing exactly what lies around the next corner. The adrenaline rush when you make a new discovery. The thrill when you paddle up to a rapid and calculate your line through what others may see as chaos. That’s when I feel most alive. The moment on your mountain bike or snowboard when you’re just on the edge of loosing control—but hold the line. That fuels me. The few seconds standing on the rock ledge as you lean back into your climbing harness, take that long breath, and wait to feel the safety of the rope catch you. That feeds me.
Adventure sports, and I would argue any life well lived, is all about calculated risks. It’s about the rush, but it’s also about your team ‘setting safety.’ The community waiting for you in eddies when you pick a bad line and need someone to pick up the pieces–on the river we call this a yard-sale or a $&@#-show. The friends who might ride faster, but always wait at the trailhead to make sure you make it out. The belayer at the bottom who slows the rope when you loose your footing. These are my people. This is how I’ve survived.
The single most terrifying part of Everett’s diagnosis was not the unknown; it was that I didn’t have anyone ‘setting safety.’ I didn’t have my trusted experts in the eddies, at the trailhead, or on the ground making sure I made it safely through.
I finally found those people on a Tuesday when Everett was 6 months old. We walked into GiGi’s Playhouse Raleigh and my life was changed. They became my safety team. My experts who had already done their first descents with Down syndrome. GiGi’s provided the gear, and for the first time, this new adventure of Down syndrome became just calculated risks and new goals to set.
Each year the Down syndrome community comes together to celebrate World Down syndrome Day on 3/21, in honor of the 3 copies of chromosome 21 that result in Down syndrome. This year I get to celebrate with my GiGi’s Playhouse Charlotte team on March 19th and 20th at the Hyatt House uptown. Unbelievably, our Charlotte co
mmunity will be just a few weeks shy of our one-year grand opening anniversary!
As I stand on the roof 166 feet above the Spectrum center you better believe I’ll be double- and triple-checking with my safety team! It will be a beautiful (and moderately terrifying) full-circle moment where my love for GiGi’s Playhouse and adrenaline come together. When I take that long breathe and lean back into the harness, I know the rope will catch me. And I know the surge of adrenaline is right behind it as I begin calculating my long walk down the side of the building!
I challenge each of you to join our team that day. Join me on the wall for the love of Down syndrome. Join me as I go Over the Edge and help ‘set safety’ for our Charlotte Down syndrome community.
To register, learn more, or support my descent visit our website
– Jessica Allen, GiGi’s Playhouse Charlotte Founding President and Executive Director + Mother