Memories of the Past, and a Miracle in the Present
The Christmas spirit eluded me in 1997.
Our baby Jeffrey, diagnosed with SMA that summer, had snagged his wings that November. Needing to find something positive, I focused on why I should be thankful. Jeffrey was in heaven, free from the ravages of SMA. I knew that, and my gratitude was genuine, but oh, boy, my heart ached.
Though mostly numb, our family survived Thanksgiving. And then, almost before I exhaled, here came Christmas. On emotional autopilot, I lugged out our little tree for the benefit of Jeffrey’s siblings, Matthew and Katie, who were in elementary school. Graciously, the generosity of family and Secret Santas (i.e., others) yielded squeals of delight on Christmas morning.
I intended to take pictures, but my camera broke on the first click. That seemed fitting.
Among the memories from that holiday season in 1997, two remain indelible: the kindness of others, many of whom remained anonymous, and meeting fellow SMA mom Cindy Schaefer in person.
Cindy and I had established an instant connection through the Families of SMA (now CureSMA) message board shortly after Jeffrey was diagnosed. The new North Carolina chapter, initiated by Cindy and her husband, hosted a Christmas party. My husband, Randy, dreaded going, fearing it would merely compound the sadness, but I knew better. The in-person hugs and tears of laughter supercharged the healing process, and it set the stage for more than 25 years (and counting!) of an extraordinary friendship.
Music for the soul
My mother, an accomplished musician, owned two stunning grand pianos and was privy to an expert piano tuner in Fort Worth, Texas. When my folks moved to South Carolina (muggy!) and eventually to the North Carolina mountains (no air conditioning!), maintaining the ideal humidity for the pianos was virtually impossible, and so was locating a tuner. Mom replaced the pianos with professional keyboards requiring minimal upkeep.
Upon learning that Jeffrey probably wouldn’t be here long, Mom recorded a collection of original songs, “Dreams for Jeffrey.” While our dreams for a miracle to halt SMA’s destruction didn’t pan out, our sweet baby always drifted easily to dreamland with Nana’s music.
Small world, big connections
Years later, Matthew transferred to the high school down the mountain where Randy coached football. Ryan Marlow was a year ahead of Matthew at the same school.
Ryan was best man at the wedding of one of Matthew’s good friends, Matt, who later officiated at Matthew’s wedding to Jill.
Jill’s sister Emily was friends in high school with Megan, who would become Ryan’s wife.
Ryan is a pastor and a piano tuner. He likely would have been the tuner for my mother’s grand pianos if she’d still had them when he started his business.
When I learned about Ryan’s dire health situation, sending some of Mom’s music, including “Dreams for Jeffrey,” seemed like a perfect first move.
Megan’s live updates covering the topsy-turvy past four months would cram a book or two. Buckle up for the ultracondensed version.
Aug. 14: Megan posted on social media about their recent anniversary getaway.
Aug. 15: Megan reported that Ryan was experiencing symptoms of vertigo. A few days later, he couldn’t see. The following day, he could no longer speak or use his left side. His cough ability, gag reflex, oxygen level, and heart rate diminished alarmingly, and he was intubated.
Aug. 26: Blood cultures showed Listeria, a germ that causes a serious but treatable infection.
Aug. 27: Ryan experienced a brain hemorrhage and was pronounced clinically deceased just before noon. Megan, her faith never wavering that her beloved husband was in God’s hands, mourned while organ recipients were located.
Aug. 30: The organ donor team waited outside Ryan’s room, prepared to escort his body to the operating room after everyone’s goodbyes. In true, last-minute miracle fashion, Ryan’s foot moved when he heard his children singing on a video.
The surgical team disbanded.
Miracle in the making
Long, amazing, improbable story short: Ryan was transferred to a long-term acute care hospital in Knoxville, Tennessee, near the end of September. His improvement there (including waving and responding with nods and squeezes!) earned him a coveted transfer on Dec. 2 to the Shepherd Center, a top rehab center for brain trauma patients in Atlanta.
Last week, Megan met with the medical dream team working so diligently with Ryan. If Ryan shows sufficient progress with continued intense therapy at Shepherd, he will remain. Otherwise, he will likely be discharged in January to go home.
Life at home would be challenging, as Ryan now uses a wheelchair and has extensive needs. But, as Dorothy utters in “The Wizard of Oz,” “There’s no place like home.”
Whether Ryan goes home or remains at Shepherd is cause for celebration. Witnessing the effects of Megan’s tenacious faith and the power of prayer from family, friends, and untold others across the world has been a gift.
And that should get anyone in the Christmas spirit.
Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.
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