It’s probably safe to say that these past four months have been a blur for many. It seems that mere blinks ago it was mid-March, the last days of normalcy in untold routines, and the beginning of upheavals that have defied description.
Somehow, it’s already four months later — four months of zipping through grocery shopping at the pre-dawn “old-people” hour, masked and attempting to decipher informational aisle directions with fogged lenses. I’m equally surprised that it’s only been four months.
So, now it’s July. The seventh day of the month signaled the anniversary of the death of one of our dogs. Duffy was hit by a car in the front yard while our son Matthew (whose birthday is in July) and his younger sister, Katie, played outside.
On the 13th of July, my physician brother Paul’s birthday, Paul performed a quick assessment of our son Jeffrey at my husband Randy’s request. Paul solemnly informed us after the brief exam that Jeffrey had no reflexes and a dull-sounding lung. He advised us that the pediatrician would likely refer us to a pediatric neurologist at Jeffrey’s scheduled “well” checkup the following morning.
The next day, July 14, 1997, marked one week after Duffy’s death, which had sparked heavy-duty discussions with Matthew and Katie about death, heaven, and God. That evening, the chance to repeat the conversation struck when a pediatric neurologist introduced Randy and me to three words that left us reeling: spinal muscular atrophy.
It was Monday, two days short of a full moon. Additionally, my legs already were screaming from the rampant poison ivy outbreak on my legs from helping Duffy out of the ditch. The stress of learning what we were up against escalated the itching frenzy until I thought I would claw my legs to shreds.
The neurologist’s words had done a similar number on my heart.
With an optimistic mission to outmaneuver SMA in some way, Randy and I mustered whatever strengths we needed to get through the day and proceed with our quest. As with any life-altering experience, it wasn’t just the “introduction” date that was connected to our assignment. We noted that we’d made it through the first day, week, and month. The unconscious charting of the passage of time (to the best of my ability, anyway) resembled my mental notation of life after Jeffrey’s death. One hour without him …, the first night …, 24 hours …, one week …, and on and on.
I realized after Jeffrey’s death that the grieving process had gotten a head start with the diagnosis.
One year later, as I flipped the calendar to July, I mentally and emotionally gravitated to three dates: July 7 (Duffy’s death/”rehearsal”), July 13 (Paul’s exam), and July 14 (diagnosis). Randy and I were in the midst of a bakery stint that kept us mostly distracted, thank goodness.
Two years later, July 13 and 14 made a few slight ripples.
For many years after that, July 14 was significant enough to acknowledge, but it didn’t make me crumble.
Over two decades later, I can say with honesty, relief, and gratitude that for the past several years, July 14 has had a different feel. It took some doing to realize that SMA and blessings could be included in the same reference, but that’s exactly what happened.
It helps that I much prefer focusing on the positive and don’t hesitate to scour nooks and crannies if necessary to find it. A few of the blessings of our SMA assignment include meeting some extraordinary SMA families, experiencing prayer and faith at work, and becoming more attuned to how snippets of life come together. Incredible signs provide reassurance that the wings of our loved ones haven’t taken them so far away after all.
Getting to share this and much more through this column is the icing on that proverbial cake.
Adding SMA to prenatal testing and starting affected babies promptly on effective treatments — Spinraza, Zolgensma, and the promising risdiplam — surely helps diffuse the devastation of an SMA type 1 diagnosis. Until the past few years, medical experts had no glimmer of optimism about SMA and its bleak prognosis. Today, with some of the treatments capable of squelching all indications of SMA type 1, I imagine that Diagnosis Day doesn’t have a chance to pack the wallop of the past.
I’m elated for the families fortunate enough to bypass the destructive nature of SMA.
Without the wallop, though, I don’t know if the blessings can be quite as appreciated.
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 Services, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.
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