I didn’t intend to write another column about The Virus, at least not right after my last one, but it seemed appropriate to share a surprising revelation from after my baby was diagnosed with the deadliest form of spinal muscular atrophy.
My husband, Randy, and I braced ourselves for a challenging set of circumstances as the pediatric neurologist examined 8-week-old Jeffrey. I had taught children with orthopedic and multiple handicapping conditions; lo and behold, there Randy and I sat several years later, crediting God’s handiwork for that life-altering assignment. We fully expected to put into use what I’d learned and practiced during that experience to provide whatever special accommodations Jeffrey would need in the future.
Except that the “future” wasn’t included in our set of circumstances.
Ours included probable death by age 2.
Once the shock of the diagnosis and prognosis transitioned somewhat into our new reality, we wasted no time looking for alternative treatments. Our goal was to save our precious Jeffrey, bucking the consensus among the medical experts that there was nothing we could do.
The search was intense and relentless. A new hook-up to the internet unearthed mind-boggling mazes of information with no end in sight. Tending to the needs of our older children — Matthew, 10, and Katie, 7 — helped blur the days and nights.
I didn’t pray for sleep, though. I needed something else.
I just didn’t know what.
Shortly after the diagnosis, Katie and I ran several “Jeffrey errands.” My legs were covered with an impressively oozy poison ivy outbreak, and someone at one of our stops asked alarmingly, “What did you do to your leg?” As soon as we walked out, Katie piped up, “I thought she was talking about my leg, ‘cause it’s so hairy.”
Katie’s wit instantly saved the day, enabling me to do something I couldn’t imagine doing again — laugh. And when I laughed, so did she … and so did Matthew, whose own witty self broke through some tough layers of sadness and fear. I’m not sure Randy or anyone else ever fully understood my need for humor wherever I could get it.
Tears are tears. I much prefer unleashing them because of belly laughs to those flowing from an overwhelming sense of grief and despair.
I’ve shed plenty of both.
“Laughter is the best medicine” stems from Proverbs 17:22: “A merry heart does good, like medicine.“
That’s an understatement.
There is nothing remotely amusing about the pending death of a child; however, I was a quick study in the benefit of balance between “doom and gloom” and humor. Call it the Seesaw Effect … or something.
My bright, hilarious 4-year-old granddaughter, Clara, has heard plenty of conversations about the coronavirus. When I asked recently if she’d like to come home with me to make dinner, she crossed her arms, furrowed her brows, and incredulously proclaimed loudly, “We can’t go to other people’s houses because of the CORONAVIRUTH!” She relented to coming with me and even having a sleepover, but when she cleared her throat that evening, she looked at me and declared matter-of-factly, “I have The Cough.”
A few days later, a thoughtful family friend hid Easter eggs in the front yard. Clara and her 2-year-old brother, James, gleefully gathered the eggs and rushed inside to check them out. Upon finding a Jolly Rancher in one of her eggs, Clara squealed ecstatically, “LOOK, MOM! I GOT A COUGH DROP!”
Well, a cough drop these days does rank pretty close to toilet paper, paper towels, hand sanitizer, and chocolate.
As the media continues hammering us with the havoc wrought by COVID-19, I’ve opted to downsize my exposure to the news. With the exception of MomMom duty two houses down the road, my one hot travel destination is the dump. My other contribution as a responsible citizen is washing at least the top layer off my hands. Don’t tell, but I do not sing “Happy Birthday” while doing so unless I’m supervising James, a pretend hand washer. Meanwhile, Clara belts out “Happy Birthday to Jonah!” (the above family friend’s toddler) only after holding her clasped hands under running water as she preps for her performance and eventual sorta-washing.
I am absolutely blessed to enjoy my delightfully animated grandchildren daily; there is no shortage of funny stuff there. I’ve also seen some particularly witty, creative memes related to the “coronaviruth” floating around online and appreciate both those who make them up and those who post them.
Thinking of ways to help each other, including sharing laughter (or at least a smile), will help get us through this. That, plus staying put and washing the top layer off our hands.
And if we were lucky, we found a cough drop in an Easter egg.
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.