Pushing for something positive after our baby’s SMA diagnosis
In the late 1990s, an SMA diagnosis was devastating news for this family
Although I rarely have a chance to read the work of fellow columnists here at BioNews, the parent company of this website, it’s evident that I’m in the midst of some stellar writers. Halsey Blocher, who is the columns lead for my group of writers, and Kevin Schaefer, who is associate director of community content as well as a columnist, often recommend exceptional columns for us to read. They’re always outstanding, and sometimes they spark an idea for my own column. This is one such instance.
In her column titled “Joyful Sorrow” at ALS News Today, Kristin Neva recently wrote about how her husband, Todd, has insisted on ignoring limitations imposed by his ALS diagnosis. She notes that sometimes she’s worried about it unnecessarily, but at other times, Todd’s boundary-pushing has warranted legitimate concern.
For example, he once fell while trying to climb onto his riding lawn mower and ended up having to barrel-roll into the house as the nighttime darkness approached. There, he waited for someone to arrive home to help get him back into his wheelchair. Despite requiring manual cough assistance when his lungs fill up with mucus or being unable to easily maneuver his power wheelchair because of a snowfall, he insisted on attending his children’s events outside the home.
Kristin writes that, because of ALS, the boundaries have been closing in on Todd, but he still pushes on. He continues to eat, despite knowing that choking is a constant risk. He talks to his mother on the phone, despite it leaving him particularly winded.
“He wants to hold on to all that he enjoys for as long as he can,” Kristin writes.
I understand pushing. My husband, Randy, coached high school football for years, pushing players to do their best on and off the field. During my stint as a kindergarten teacher at a self-contained school for children with multiple physical conditions, I urged my charges to push themselves out of their comfort zones.
One day, the word “push” gained new meaning for me.
Pushing away from despair
Our third baby, Jeffrey, was 8 weeks old when he was diagnosed with SMA. Randy and I pushed — and pushed hard.
We pushed ourselves out of the surreal nightmare that a rare, genetic killer likely would claim our beautiful baby before he reached kindergarten. (He didn’t even reach 6 months old.)
We pushed ourselves to defy the dismal words uttered by the neurologist, who said there was no cure or treatment for SMA at the time. Back then, in 1997, hopes were dashed. Our mammoth assignment momentarily dwarfed a “healthy baby” regimen of checkups and immunizations. However, the neurologist’s flippant response that “it didn’t really matter” if Jeffrey had his immunizations fueled me to push even harder to prove him wrong.
Upon our return home from the hospital, I faced our older children, Matthew, who was 10 at the time, and Katie, then 8, and my parents. Pushing my usual optimism way beyond its normal limit, I revealed only that God had handed us a hefty assignment and we’d do our best to tackle it. Unbeknownst to me, Paul, my physician brother who briefly examined Jeffrey two days earlier, had shared with our folks his suspicions of the diagnosis. I’m not sure how much optimism I could’ve mustered had I been aware that they already knew.
That night, I pushed back tears when Matthew, who sensed I hadn’t told the whole story, asked about SMA’s progression. It was obvious from his questions and tears that he understood the ramifications of our daunting assignment.
Pushing (we hoped) in a positive direction
The next morning started with a push to learn all we could about SMA. My first call was to an organization named Families of SMA (it’s now called Cure SMA) to request any information they could send. Retaining sufficient composure just to make the call required me to push myself, but it turned out to be one of the easier tasks I’d have. Talking to someone who understood why I was tearing up was a huge relief and provided me with sufficient fortitude for other items on the agenda.
That day, I penned a heartfelt letter asking for prayers and any information about SMA. I pushed myself to mail copies to folks I hadn’t seen in years and others I didn’t even know well, including the parents of Matthew and Katie’s preschool classmates.
When a home health nurse made a surprise visit a couple of days after the diagnosis, I pushed — rather, shoved — myself into asking what had already muscled its way into my reeling head: Could we donate Jeffrey’s organs at the end?
I felt like someone had pushed me over the edge.
When the pushing changed course
In the weeks after Jeffrey’s diagnosis, Randy and I pushed to unearth any potential roadblock to SMA’s devastation, whether it was chiropractic treatment, essential oils and supplements, therapeutic electrical stimulation, or gabapentin. Prayer was steady.
We pushed until we believed we’d exhausted every option and until we thought we’d pushed Jeffrey far enough.
As the final stretch of our SMA assignment commenced, I pushed myself to administer the morphine prescribed by Jeffrey’s hospice nurse. I pushed myself to believe that while losing our baby had to be the worst imaginable circumstance, confidence that he’d be safe in the arms of Jesus eased the agony.
I just hope we won’t be asked to push like that again.
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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