In the beginning of the COVID-19 chaos, I tried to stay informed of updated health-related warnings and recommendations. I soon waved the proverbial white flag to ward off permanent whiplash from keeping abreast of the ever-changing information.
During this pandemic pandemonium, my current primary daily duty is playing “MomMom” to our delightfully engaging, energized grandkiddos. Clara is 4, and James is 2.
With Clara’s ties to St. Jude due to her Beckwith-Wiedemann syndrome and James’ eventful croup ordeal in 2019, it was deemed preferable for them to remain home for a while. Clara’s participation in virtual pre-K requires her to pay even closer attention than her in-class classmates, which isn’t always easy. Her mama (Jill, a virtual third grade teacher) and daddy (Matthew, a virtual college teacher) help with as many of her Zoom sessions as possible, but I’m “it” for a big chunk of them.
Clara’s teacher, Miss K, is doing the best she can, considering she’s tending to a class of of live 4-year-olds and three more in cyberspace. I’d like to think I’m doing the best I can, too, but teaching an old dog new tricks can be quite an undertaking.
Near the end of a Zoom session on the first day, I found something entertaining to occupy James on his “tab-u-wet” while I joined Clara during the exercises as the teacher demonstrated. When I heard Miss K instruct everyone to “turn around,” Clara and I dutifully spun round and round until Clara said, “I’m dizzy!” I then heard Miss K’s voice: “Just spin around one time!”
Pay attention, MomMom.
Upon learning that my 43rd birthday would be spent anticipating the arrival of our surprise third baby, the needle on my emotional meter hit euphoria, panic, then euphoria again. At the same time, Randy, my husband, was experiencing some challenging turmoil in his new teaching and coaching assignment. We were a pair.
Our baby Jeffrey’s diagnosis of spinal muscular atrophy (SMA) came two months after his birth. In 1997, treatment for SMA was a pipe dream, so Randy and I forged ahead on our own. A newbie to the information highway, I burned rubber and midnight oil looking for anything to thwart the progression of SMA. My head threatened implosion more than once.
Since what we tried with Jeffrey — chiropractic adjustments, therapeutic electrical stimulation, supplements, herbs, massage, and more — could not be found in an SMA playbook, every single new anything (i.e., twitching, drooling) warranted an assessment.
“Is this (new movement, increased drooling, stuffy nose, etc.) because of SMA, or is it from the fill-in-the-blank treatment?”
“Or is it actually just normal baby stuff?”
I paid close attention to our sweet little guy’s every move while he was perched in my lap, his favorite spot. I didn’t want to miss a thing, even if I couldn’t figure it out.
As Jeffrey’s earthly body continued winding down, hospice joined our journey to assist all of us with the final lap. I kept constant tabs on the color of Jeffrey’s skin and his breathing, which was becoming increasingly erratic, so I would know when to administer the morphine. When the alarming Cheyne-Stokes breathing began, I couldn’t take my eyes off his tiny chest. I hated to blink.
Paying utmost attention to the signs that Jeffrey was on the brink of snagging his wings helped immensely when my father was about to snag his, and again when my mother-in-law was about to snag hers.
The evening our Labor Day cabin guest checked out, I drove the short distance up to the cabin to gather laundry. As I was leaving, I slowly pulled the door closed, suspicious that I was forgetting something. Nothing came to mind, though, until the second the locked door closed. I’d forgotten the two bags of produce our guest had brought for us! Impressed that I had identified the culprit so quickly, I reached into my pocket to get my keys to unlock the door.
My personal keys (including a spare cabin key) were sitting inside the locked cabin. Both the regular and spare keys for cabin guests were sitting right beside them.
The price I paid for not paying attention included having to walk down to the house to get what I thought was yet another spare cabin key, then walking back up to the cabin to discover that the key didn’t work. Thanks to angel intervention, however, I remembered I had just cracked open the windows, so voila! I raised one and climbed inside to retrieve the keys and the produce, all without breaking a leg.
We now have two more spare cabin keys. I trust I can remember where I put them.
Pay attention, MomMom.
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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