Diagnosis Day — and the Day After

Keeping up with the calendars around here can be dizzying.

One desk calendar is reserved for scheduling jobs for our small carpet-cleaning business. Reminders to do one thing or a hundred dot almost every square on another. We have a reservation book for our cabin and a to-do schedule on the computer, where I copy/cut/paste like a ninja.

Because my mind frequently takes off on its own, I write everything down. Although I know our immediate family’s birthdays and anniversaries, I still write them down because sometimes I can’t keep up with what day it is.

What is not written down — anywhere — is the date Jeffrey was diagnosed with spinal muscular atrophy: July 14, 1997.

On that date, our lives took a nosedive smack dab into the depths of a black hole. The memory of hearing the ominous-sounding probable diagnosis and numbing prognosis (death by age 2) still defies description. 

It doesn’t need to be marked on any calendar — even if I wanted a reminder.

As impactful as the 14th was on our lives, however, it was the 15th — when we first spied a glimmer of light from that black hole — that shaped the “new” us even more.

Upon Jeffrey’s dismissal from the hospital, we drove straight to the office of a chiropractor who had been recommended to us. The chiropractor took great interest in Jeffrey and began gently massaging his neck at the approximate spot where a mother cat licks her newborn kittens to stimulate movement. As if on cue, Jeffrey’s feet moved!

Instantly, we appreciated an incredible surge of positive energy and confidence that we had been purposefully selected for this daunting mission. Maybe we would somehow contribute to the discovery of a natural treatment for SMA! With renewed conviction that God has a purpose for every action, Randy and I left the chiropractor’s office with a heaping dose of optimistic expectations and determination to keep massaging our little kitten’s neck.

On the way home, where we would surely rally the troops with our enthusiasm, we stopped to get paper towels and dog food. All at once, I felt the crushing effects of the previous 72 hours. The poison ivy I had acquired after helping our dying dog out of a ditch revved up to claw-my-eyeballs-out level. My joints, petrified from hours of sitting frozen in fear, and the rest of me, puffy from sleep deprivation and shedding more than a few tears, rendered me a sight to behold.

I shuffled my zombified self through the store’s entrance. On my way to the paper towels and dog food, every display I passed advertised something for babies or toddlers. I tried to focus on the items we needed — paper towels, dog food … paper towels, dog food — but mental, physical, and emotional exhaustion was heaped on top of sheer panic as to what had transpired. (We were just told our baby was going to die!!!)

It all gnawed at my chipper facade until I wondered in the checkout line how the heck we were going to explain it all to our families, especially Matthew and Katie. And how were Randy and I going to function? Were we going to function?

The prayers for guidance and strength continued all the way up the mountain until we reached our driveway. They were amplified as we made our way to the house, where my folks waited with Matthew and Katie for an update.

Those prayers worked. Speaking with a touch of clarity and promising Matthew and Katie that we would do our very best with this assignment, I managed not to crumble during the pep talk.

I knew well before we arrived at the hospital the day before that our lives had changed forever. The benefit of faith and prayer, however, was an assurance that we were not the ones ultimately in control of this very special assignment.

July 14th, diagnosis. “Devastation” is an understatement.

July 15th, the day after. SMA, here we come.

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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.