Born in 1991, I was the third child but the second living. My sister, Lindsay, passed away at six months old from a debilitating neuromuscular disease known as Spinal Muscular Atrophy type one, a.k.a. Werdnig Hoffman disease. This was a death sentence back then, all the way up until just a few years ago, when scientists came out with multiple treatments for this disease that primarily work most effectively in infants and newborns. Lindsay Amber Stewart was too weak and went to be with Jesus too soon. Life must go on.
Next came my big brother Matt, or, as I call him, “Bubba.” The healthy baby boy held my parents together while they were still grieving such a tremendous loss of their firstborn.
Taking every challenge head-on
I was born healthy but was diagnosed with the same disease as my sister at six months old. What was laid before me was a lifetime of struggles, hospital visits, and a prognosis of living two years or less. I took every challenge head-on, with the sovereign hand of God guiding me every step of the way. I’ve seen angels. I’ve talked to God. He has even talked back and told my parents and myself how to best take care of me throughout my 33 years thus far on this earth. I’m referred to as a “medical miracle” by doctors. God is more real to me than if He were sitting down with me having a cup of coffee.
My father has been singing Southern gospel music since before I was born. I don’t believe I’m biased when I say he has the voice of an angel. I grew up watching him sing in between hospital visits. As I’ve gotten older, I don’t get out as much; it’s just harder with all my medical needs and all the supplies I have to take with me; plus, I deal with pain in my hips and back. When I’m feeling well, though, I still like to go see my daddy sing.
‘Be the exception’
A few years ago, on a hot summer day (because I hibernate in the winter), my dad was singing at a little white church half an hour away in the country. I got dressed, and with makeup (I don’t leave home without it) and hair done, out the door we went, in my wheelchair-accessible minivan (every girl’s dream car), over the river and through the woods to get to this church on time.
We arrived just a little late because I couldn’t be on time for anything, so I rolled myself out of the van. I visually scanned the church laid before me. Where’s the ramp to get in? I drove to one side, then the other. The nurse has closed my ride and is behind me, hauling my 50lb medical bag in tow (OK, maybe 20lb, whatever). Stunned initially, I let out a “Ummmm…” Surely there’s a ramp somewhere, and I’m just momentarily blind, right? But no. I stared at the six steps that led up to the church doors, tears welling up in my eyes. “Don’t let them fall; you have to stay strong,” I thought to myself. My caregiver and I waited outside in the heat for half an hour before some strong men came out and carried my 300+ pound wheelchair, with me in it, up the stairs into the church. It was kind of them, but if they had just had a ramp, it would have saved so much trouble and made me feel like less of an outcast and burden.
Individuals who are disabled, like myself, live in a world that wasn’t designed for us.
We understand sometimes those not affected by disability can be blind to us and our needs, but can I ask you, especially church leaders, to please ask God to open your eyes?
Be the exception. We’re all just searching for a place where we belong. After all, what better place to welcome the outcasts than the church?
EDITOR’S NOTE — This story was written by Amber Stewart and originally published by the Baptist Convention of Maryland/Delaware. Amber Stewart is a member of Pleasant View Baptist Church, Port Deposit. She is the author of, “Broken and Beautiful: The Greatest Beauty Comes from Our Deepest Pain,” and the “Sassy Sally and Her Little Dog” series.
