I’m thankful February was short, and I’m ready for March’s optimism
Hello, March! Here in the North Carolina mountains, daffodils optimistically poke through the ground; impatient ones bloomed last week. Trees are budding, and flower beds are sporting a bit of green. Forager bees are gathering pollen for the baby bees. With all this popping up and out, you’d think winter was over. It’s not, but spring will be here soon.
March, a long month typically replete with signs of rejuvenation, follows the shortest month, which this year was burdened by sadness for me. February’s abbreviated calendar included tough losses close to home, in the SMA community, and beyond.
Those snagging their wings in February include a favorite worker in our Walmart pharmacy, a beloved retired teacher at the local high school, prominent members of the community, and the sister of one of my best teaching buddies at Brockman School in Columbia, South Carolina. Other losses include Augie Nieto (a hero from the ALS community), Melissa Milinovich (a wonderful adult role model for others with SMA and for her daughter, who doesn’t have SMA), several sweet children with SMA, and even an esteemed, adored doctor in the SMA community. It’s been overwhelming.
And if those didn’t pack enough of a punch, SMA News Today’s Alyssa Silva sure did in her column about losing her grandmother. Because of COVID-19, Alyssa (at higher risk because of SMA) and her mother (caring for Alyssa) were unable to visit her grandmother in the hospital as her health declined near January’s end. Alyssa was thankful they were able to FaceTime, but that’s not the same.
I empathize with Alyssa completely. When pandemic craziness started in 2020, I was horrified by the stories of family and friends kept from loved ones hovering near death and in isolation. I couldn’t fathom anything worse, and as my own mother’s vision and patience with life waned, I beefed up the prayers that her last breath would be at home.
As it turned out, on Feb. 11 of last year, Mom was escorted to the emergency room and admitted after testing positive for COVID-19. I wasn’t able to see her until her sixth night in the hospital, and only then because the protocol had shifted to palliative care.
That I was grateful for the opportunity to be with my mother as her earthly time wound down is an understatement of understatements. The others in the family able to visit her would agree.
Awareness doesn’t end for those with rare diseases
Yesterday, Feb. 28, was designated Rare Disease Day. Columnists for BioNews, the parent company of this website, filled the entire month with stories about why awareness matters to them: finding a treatment or cure, connecting rare disease families with each other, improving treacherous scenarios regarding nursing, caregiving, and equipment, and providing newborn screening for immediate treatment if available.
What many might have forgotten is that while February’s official awareness message ends with the arrival of March, awareness for those somehow affected by rare diseases doesn’t end. Ever.
Introduction of SMA to our family
Jeffrey, our youngest, was diagnosed with SMA in 1997, when he was 2 months old. Like most families back then, the diagnosis propelled us into completely foreign territory. Hearing the prognosis of this rare disease (death by the time he was 2) unleashed relentless tears and a determination to prove the neurologist wrong.
My husband, Randy, and I tried our best to thwart SMA’s devastation. I relied on my experience working with children with orthopedic and multihandicapping conditions at Brockman School. During my final year at the school, I employed hastily learned skilled nursing tactics. I was introduced to suctioning, feeding tubes, positioning, and much more.
Giving my baby morphine near the end was not covered in the curriculum.
At some point in our journey, I learned that SMA, though rare, was the leading genetic killer of children under 2 years. Jeffrey made it to 5 and a half months.
Years of awareness campaigns have helped boost newborn screening for SMA. Unlike in 1997, today there’s hope for newborns with SMA. Awareness campaigns will continue until newborn screening is universal.
A special celebration ‘sign’
Feb. 21 was my mother’s first “angel anniversary.” It comes eight days after my late dad’s birthday, the last of their first round of “together again — finally!” reunion celebrations, after birthdays and first dates and more, since Mom’s death.
Our son Matthew and his family now own my parents’ house. Early on Feb. 13, I sent him a “Happy Papa’s birthday!” email. Minutes later, Jill, our daughter-in-law, shared evidence that Nana and Papa weren’t about to leave us out of the celebration.
Meanwhile, here’s to whatever March brings.
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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