Being thankful even for SMA
It’s somehow already time for Thanksgiving, the designated day for us to give thanks for our blessings. Ideally, we should designate a few more days each year to doing that — like, say, the other 364 — but one day a year is better than none.
I try to give thanks at bedtime before I fall into a near coma. There’s a lot on my gratitude list, so sometimes I have to work fast before my eyelids clamp tight. I wish I could say I thank God for everything, but there’s so much.
You might be surprised by one item on my list.
Thankful for family … and SMA?
I’m always thankful for my family. My husband, Randy, has tolerated my antics for more than 50 years. Our two adult children have done us proud, and their spouses, our bonus “children,” are equally fine adults who slipped a number of years ago into our circus of a family with the greatest of ease. Our two grandchildren are smart, funny, energetic, thoughtful, and cute.
And then there’s Jeffrey. In late 1996, news that we were having a third baby caught Randy and me by complete surprise, but there was more to come. Eight weeks after his birth, we learned that Jeffrey’s “special delivery” included an additional whammy. Our beautiful baby had SMA.
That’s certainly nothing to be thankful for, right?
One big blessing from SMA: The people
While I wouldn’t have voluntarily tackled a daunting assignment like SMA, I can’t ignore the blessings stemming from it, either. Witnessing faith and prayer “in real live” (as our grandson says), becoming attuned to signs hinting that heaven’s closer than we think, and the kindness of people were all godsends, courtesy of SMA.
Family, friends, and fellow SMA families stepped up without hesitation, assisting however they could. My parents, innkeepers at the family’s lodge on the Blue Ridge Parkway, helped with Jeffrey and his siblings, Matthew and Katie, and provided much-appreciated morale boosts.
Friends from my earlier days teaching kindergarteners with orthopedic and other conditions also didn’t skip a beat. A couple of them, including one of my wonderful teacher assistants, even drove up to visit.
We had internet installed shortly after the diagnosis. I ignored my typical fear of new tech stuff and promptly connected with SMA families via message boards. Mere weeks after the diagnosis, I answered a post from Cindy Schaefer, fellow North Carolinian and mom to Bionews’ Kevin Schaefer. It took only a few email exchanges in one sitting to realize that SMA — and only SMA — had set into motion the beginning of an indelible friendship.
SMA, a hurricane, my mother’s music, and new friends
I’m thankful for the opportunity to share Jeffrey’s story through this column. Families experiencing the loss of a child fear their children will be forgotten. Writing a column helps ease that concern for me, as does social media. Before Hurricane Helene, I used Facebook primarily to share the column, post about Jeffrey on his birthday and “angel day,” and promote SMA Awareness Month.
Since Helene, tracking down and sharing recovery updates on Facebook has become an obsession. I’ve shared multiple accounts of devastation, incredible resilience and faith, the overwhelming goodness of the people assisting with recovery efforts, and utter frustration with authority tasked with ameliorating the most dire situations. The obsession is part survivor’s guilt and part just wanting to make sure our neighbors, like our deceased children, aren’t forgotten.
I was saddened to learn that a fellow Bionews columnist had lost both of her parents to raging floodwaters in one of the hardest-hit areas in North Carolina. After exchanging a few messages, she became a new friend — solely because of Helene’s destruction.
Thanks to SMA (the reason I’m a columnist for SMA News Today), I met another columnist friend, Colleen Steele. She’d taken a brief hiatus from writing after her husband’s death, when she moved across the country to care for her aging parents.
I was nudged to contact her and ask if she might like CDs of some of my late mother’s music. Colleen was thrilled, adding that her mother could have been a professional singer had it not been for severe stage fright. My mother, a pianist, also experienced severe stage fright! I sent Colleen several CDs, thrilled to share Mom’s extraordinary musical gift with her. Colleen said her mother enjoys singing along to familiar tunes; I know Mom is delighted!
Without SMA, I wouldn’t have a column, made another new friend, or been able to share Mom’s musical genius.
This year, I’m particularly thankful for family and friends (old, new, and reconnected). I’m thankful that Helene’s reign of terror left us mostly alone, unlike other areas of our county and certainly to the west of us. I appreciate good health and the energy (to try) to keep up with the multiplying projects around here.
Assured Jeffrey’s in the perfect place, I’m grateful for our SMA assignment.
Really.
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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