A double rainbow, a flash flood, and memories of different kinds of storms
Like a sudden storm, our SMA assignment was intense but brief
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Last Wednesday evening, a double rainbow popped up across the road. We’d had rain to some extent every afternoon and night. The rainbow provided a beautiful bit of calm and was, we hoped, a sign that the rain would be easing up. It turned out to be the calm before the storm.
This was the most substantial flash flooding at our house in our 30 years here. (Photo by Helen Baldwin)
The rain began the next afternoon, slowly at first. Then it picked up. With the ground saturated, the water had nowhere to go. I watched as our little creek rose, swirling deliriously. Within mere minutes, water rushed over from across the road, flooding the road and half our yard on that side of the house. While the creek had raged when the monstrous Hurricane Helene hit almost two years ago, water hadn’t come that close to the house.
Almost as quickly as the flooding hit, the water receded. The whole thing transpired so fast, I wasn’t sure what had just happened.
That’s an inkling of how I felt on the night of Nov. 4, 1997.
A move brings more than just new jobs
My husband, Randy, and I both grew up in Fort Worth, Texas. We never entertained the thought of leaving.
Eleven years after we married, though, Randy was offered a position as defensive coordinator at a lucrative private school. The catch? We had to move to Columbia, South Carolina. I was hired to teach kindergarten at Brockman School, a self-contained school for children with multiple disabilities.
The move to Columbia was a whirlwind, with football, teaching, and house hunting. The first year flew by; weeks later, our first baby, Matthew, was born. Our daughter, Katie, arrived three years later. Before I knew it, I had five years of teaching under my belt.
Because of the push to “mainstream” students enrolled in self-contained schools, I didn’t have a class lined up for my sixth year.
At the 11th hour, the school nurse, Mary, found me at a teacher workshop and informed me that I had students! My enthusiasm and relief waned only slightly when Mary told me to sit down while she described my upcoming year.
The good news was that the teacher assistant I’d have was wonderful. The other news? My teaching duties would be taking a back seat to skilled nursing. I would be learning a lot on the fly. It would be a stressful year.
That turned out to be my final year at Brockman. Down the road, I would reap more benefits from that year than from any other.
Surprises galore
In May 1997, Randy, Matthew, Katie, and I were happily adjusting to life in the North Carolina mountains when we welcomed our surprise baby, Jeffrey. He was beautiful!
Meanwhile, we were on the heels of a miserable year of coaching for Randy that (almost mercifully) ended when his contract wasn’t renewed. There was considerable stress at losing our income, but we were about to learn why he needed to be at home.
Two months after Jeffrey’s birth, Randy and I sat with him at Brenner Children’s Hospital, consulting with a pediatric neurologist. Jeffrey’s lack of reflexes, movement, and head control, along with his abdominal breathing and weak cry, had a name: spinal muscular atrophy (SMA). With the severity of his type (Werdnig-Hoffmann, or type 1), we were told he likely wouldn’t make it to kindergarten before all the muscles for moving, sucking, swallowing, and breathing quit functioning.
How did we get from the revelation that we were having a surprise baby to being told that he wouldn’t be with us long? Surely there had been a mistake.
Gratitude for my Brockman experience
My experiences at Brockman helped provide a glimmer of light in the SMA storm. Suctioning one of my students daily during my final year alleviated the stress of learning to suction. It did not ease having to suction my baby.
SMA wasted no time. This proverbial storm was intense but brief. At just 5.5 months, Jeffrey took his final breath. He was perched, as usual, on his pillow in my lap.
A double rainbow appears across the road. (Photo by Helen Baldwin)
I’d been in the “Jeffrey chair” for his final 13 hours, not wanting to leave our tiny warrior’s side for even a minute. In short order, Randy made “The Call” to our families, the hospice nurse, and the funeral home director. I bathed Jeffrey, grappling with the fact that it would soon be time to hand his body over to someone else for the last time. I dressed him in the gorgeous going-away gown my sister-in-law had made and rocked him. Randy woke Matthew and Katie up.
Just like that, our SMA assignment ended. “Surreal” is a fitting, if grossly inadequate, description of those few months in which we had a baby and buried a baby. Talk about a flash flood.
Although we didn’t have a double rainbow after Jeffrey’s death, we did see a twinkling star. If there was one sign that served as immense consolation of his destination, that was it.
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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