It all started 23 years ago, this propensity for November to pack a punch.
In the wee hours of Nov. 1, 1997, a power outage set the stage for an eventful day.
Make that an eventful few days.
By that time, our baby Jeffrey, diagnosed with spinal muscular atrophy type 1, was comfortable only on a pillow on my lap. Because of the oxygenator and blow-by oxygen keeping him a bit more comfortable, losing power meant an instantaneous beeping alarm. I don’t know how long it took to wake me, but once I did, hoo boy.
My husband, Randy, and our children, Katie and Matthew, who initially thought our house was on fire, stumbled into action. Randy scrounged up a candle and flashlight and hooked up the portable oxygen tank. The flickering light on Jeffrey’s face revealed a sickeningly familiar expression. It mimicked the limp look on his face during multiple episodes of respiratory arrest a mere three weeks earlier — when Randy and I braced for the end.
With a return of blow-by oxygen, along with morphine, suctioning, and more than a little prayer, Jeffrey began breathing again.
While we waited in the dark of night for the return of power, Jeffrey needed more morphine, and the oxygen tank was knocked over, further frazzling nerves. Our tiny warrior needed intense suctioning again. Just as the battery to the suction machine fizzled, the power came back on.
We’d need a lot more.
As the first day of that November inched along, Jeffrey’s condition deteriorated at an alarming speed. From his nursing, albeit weakly, to having milk dropped into his mouth with a dropper, to requiring increased morphine and suctioning, it was apparent we were nearing the final lap of our SMA assignment.
I asked God to take Jeffrey, if it was His will. And then I promised to do whatever was necessary to keep our little guy comfortable until whenever.
The day continued to qualify as eventful. A wild thunderstorm caused Katie to panic that the TV antenna would be hit by lightning. Work continued on the road heading up our little mountain to Jeffrey’s upcoming resting spot. Jeffrey required increased morphine and suctioning. I realized I couldn’t remember when he — or any of us — had smiled last.
In the afternoon of Nov. 3, Jeffrey looked at me and clamped his lips shut for the morphine. There was no need to ponder what that meant.
An exquisite going-away gown and pillow for Jeffrey made by my sister-in-law, Jaymie, arrived in the mail. Katie thought it was for her American Girl doll. But not for long.
On Tuesday, Nov. 4, Jaymie and her daughter, Bethany, arrived unexpectedly for a visit. Bethany was out of school for Election Day. (What election?) It was also her ninth birthday.
Jaymie knew Bethany would want to see Jeffrey again, and based on my updates, Jaymie thought this might be her last chance. I asked my mother, who had come over to help, to meet them outside and especially prepare Bethany. No longer the chubby baby she had cuddled not too long before, Jeffrey required almost constant suctioning and morphine. His focus was elsewhere.
During Jaymie and Bethany’s visit, the counselors and some of the faculty from Matthew and Katie’s school brought food and grocery gift certificates. They had soared far above and beyond the call of duty since they learned of Jeffrey’s diagnosis.
Randy took Katie to Brownies that evening. I beefed up the prayers that nothing would happen before they returned home.
At 10:43 that night, Jeffrey had endured hours of increased morphine and suctioning deemed only minimally effective. I told him how much we loved him and — finally — thought to give him permission to go on.
One look of thanks and two breaths was all it took.
Our active SMA duty had ended.
The stunning display of colors on top of delightfully mild temperatures has always rendered fall my favorite season, at least until winter’s first snowflakes drift by. For the past 23 years, however, reminders of the bluest of skies and spectacular colors on our final outing with Jeffrey (to seek, unsuccessfully, the opinion of a pulmonologist) have been topped every year with a bit of emotional upheaval.
It took me a while to realize what was happening and a while longer to embrace it in memoriam.
The lunacy of 2020 has been pervasive for so long, this fall seemed almost normal … as if any of us would recognize normal. Our grandchildren, Clara, 4, and James, 2, keep me hopping daily with their perpetual antics, and every day I am thankful for them and those antics. We talk about Jeffrey and his spot in heaven. Clara is always quick to say she misses him.
As do we all. But he’s good at sending signs, like perhaps that fawn out the kitchen window on Nov. 4.
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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