The end of daylight saving time leaves the barn doors open
I don’t know what it is about the end of daylight saving time that rustles my brain when the sun goes down. Maybe it’s because we think of secretive things emerging at night, and now it gets dark at 5:30.
As time backed up this month, my “barn doors opened,” as my late mother used to say. Memories jockeyed for first place out the doors.
My brother, Paul, wrote to tell me that his grandsons had collided with each other, sending one to the emergency room with jaw fractures. That prompted a memory of when Paul and I were kids and running around in the sprinkler in our yard, under a mimosa tree. It would’ve been wise for at least one of us to have kept our eyes open, but we didn’t, and Paul’s mouth suffered from our own collision.
Another memory burst forth, of when Paul and I were chasing each other through our grandparents’ house. We were told more than once to stop, but we feigned collective hearing loss and kept going. I ended up on the screened-in porch, with Paul about to slam the French door shut. With poor timing and poorer aim, I instinctively pushed the door, propelling my arm right through a pane of glass.
The blood pouring from a wicked gash on my wrist and another on my upper arm shocked us into a momentary “What just happened?” stupor until I’m pretty sure I screamed that I was dying. I wasn’t, thank goodness, but as the doctor stitched me up, he proclaimed that it could’ve been much, much worse.
A miscarriage, babies, and a surprise
My husband, Randy, and I had been married eight years when the “baby bug” hit. Pregnancy came easily. Just as I shared the good news with the last essential friend, however, I had a miscarriage.
A few months later, I spiffied up our flower bed of prolific periwinkles. Still crushed and still “unpregnant,” I heard a voice assuring me that we would have a baby. What I didn’t hear, but clearly understood, was “when it’s time.”
I acquired special education certification, endured an emergency appendectomy, moved with Randy from Texas to South Carolina, and began teaching kindergarteners with varying disabilities. In the blistering summer following my first year of teaching, our first son, Matthew, was born.
Despite loving our perfect baby more than anything, I found myself anticipating certain milestones — the umbilical cord falling off, Matthew putting the pacifier back into his mouth, his sleeping through the night, blah, blah, blah. Sleep deprivation does that.
The milestones passed — in a blur. Matthew became a big brother to our daughter, Katie, and before we knew what hit, they were attending elementary school.
And then came 1997, the Year of Big Surprises. Our next baby, Jeffrey, was a big surprise; the fact that he was beautiful and a spitting image of his older siblings was not.
The biggest surprise, yet to come, was that he harbored a deadly genetic secret.
Another time change
During Jeffrey’s first two months, I don’t recall being in a hurry for anything. My reward for not rushing milestones, I thought, was having the easiest baby on the planet. I didn’t know that he didn’t wail at the top of his lungs or wiggle during diaper changes because his muscles had begun petering out.
Jeffrey had SMA.
The diagnosis in the middle of summer hurled familiar routines out the window. Sanity soon followed. My concept of time was skewed until school resumed, forcing me to remain alert for Matthew and Katie. Meanwhile, Jeffrey’s morphine and suctioning routine intensified that fall as our SMA assignment wound down.
On Oct. 25, 1997, in an attempt to remain a step ahead of Jeffrey’s next morphine dose, I updated the dosage schedule, only to realize with horror that daylight saving time was ending in a few hours. Rehashing the frenzy and utter mental exhaustion of revising the schedule with the new times before Jeffrey needed more morphine unleashes tears even today — 26 years later.
Remembering the music between the notes
The barn doors are still flung open. For the first time since my mom’s death in early 2022, I recently listened to CDs of music she and I recorded years ago. I recalled the excitement of being able to record our practice sessions from new keyboards directly into the recording equipment. Barking dogs, ringing telephones, sneezes, and my occasional beat-counting no longer interfered with the recordings.
As my mind drifted along to our playing, I anticipated the chatter and guffaws that came when a goof (usually mine) forced us to stop, cackle, and start over. But there were none. My eyes welled up because I missed hearing those things at least as much as I relished hearing the music again, a bittersweet recollection of the fun we had for so many years.
Mom told me that myriad memories, many totally random, popped up the older she got. Maybe we old folks just can’t shut the barn doors tight enough.
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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