I’m a flop at remembering details and dates. However, 1997 is the exception.
On July 7, 1997, our dog Duffy was killed by a car, sparking a conversation with my son Jeffrey’s older siblings about death, heaven, and God’s role.
One week later, on July 14, spinal muscular atrophy (SMA) barged into our lives.
Oct. 6 signaled the beginning of the end of Jeffrey’s time with us. I’m writing this column on the same day 22 years later.
My husband, Randy, and I adjusted as much as humanly possible to the demands and promises of SMA. We tried chiropractic/cranial adjustments, essential oils, herbs, supplements, kinesiology exercises, massage, therapeutic electrical stimulation, prayer, and more prayer. I played nurse more than mama.
Questions and doubts were constant: Are we doing enough? Is this (fill in the blank) a normal baby thing or an SMA thing? Should we look into (fill in the blank)? When will we know that enough is enough?
What is God expecting us to do here?
One of the final options was to see if Jeffrey was a candidate for a BiPAP machine. Jeffrey beamed in my lap as I skimmed the packet of information from the pulmonologist’s office. I scheduled a consultation in Asheville, North Carolina, for Oct. 6. Four days away.
Randy, Jeffrey, and I settled in with bountiful optimism for the three-hour trip. We were in awe of the spectacular fall colors, eagerly anticipating what we trusted would be a memorable visit.
As I wrote in “The Jeffrey Journey,” “Foresight would have headed us back home.”
The pulmonologist insisted that we try the In-Exsufflator, a machine that is used with patients who can follow directions and cough on command.
I should have listened to my gut.
Our innocent, terrified baby went into respiratory arrest and was transferred to the nearby ER, where he went into arrest again. The pulmonologist was shaken. He eventually said that a BiPAP was the only option.
Miraculously, we made it home the next day. Jeffrey was exhausted. Our wonderful home health nurse suggested hospice, and I didn’t argue. The next few weeks were spent keeping Jeffrey comfortable with morphine, suctioning, and lots of loving on a pillow in my lap.
The leaves withered and fell off. Jeffrey continued to deteriorate. At 10:43 p.m. on Nov. 4, he died.
Even now, over 20 years later, I’m rattled by crisp fall temperatures and the theatrics of the leaves in our spectacular mountain area. It’s still my favorite time of year, albeit bittersweet since 1997. Memories of that fateful October consultation are always at the ready, especially during this season.
Alas, so am I.
Happy fall (and “get back up”) to us all.
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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