When This Column Merges With Memory Lane

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by Helen Baldwin |

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Kevin Schaefer was a cute, spunky, almost-4-year-old when I lucked into a plum friendship with his mama, Cindy. My third baby, Jeffrey, had just been diagnosed with SMA type 1. Kevin, her third child, had a milder form.

Cindy and I became fast friends. With three hours’ distance and packed schedules between us, we’ve only met in person a handful of times. You’d never know it, though.

But I digress.

When that spunky preschooler grew up, he asked if I’d like to pen a column for SMA News Today.

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My quest to share our family’s SMA assignment led to “The Jeffrey Journey.” An account of our surprise baby’s brief earthly time, the book is based on notes I scribbled. Included is a special dedication to those living with SMA and those who have gone on.

As the old SMA groups’ message boards dissolved, I joined Facebook primarily to retain connections with other SMA families. I still mostly utilize Facebook on Jeffrey’s birthday, his angel anniversary, and as many days as possible during SMA Awareness Month in August.

So, when Kevin invited me to join the SMA News Today team, I couldn’t pass it up.

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I’ve been with BioNews, the parent company of this site, for 2.5 years. I’d love to claim that the proficiency and encouragement from my fellow writers and editors has considerably eased the column process.

The truth is, however, that pulling it together doesn’t always feel less challenging than it did in the beginning. Figuring out a topic (sometimes a gift, sometimes a brick wall), satisfying the required mechanics (word count, links, etc.), and trying not to sound dull can be quite the trick for this old dog.

That’s not all. Most BioNews columnists write about rare diseases that affect them. Sometimes the affected one is a family member. Caregivers are also part of the columnist community.

I was hired to write about SMA type 1. To my knowledge, my situation is unique: Jeffrey, my “subject,” was present in the earthly sense for less than six months.

Keeping the tone of my columns relatively upbeat isn’t difficult, as I’m generally an optimist. Seeking a glimmer of anything positive as your baby’s life winds down may not seem like favorable fodder for a column, but the blessings are there for sharing. Sometimes, however, it’s not so easy figuring out how to broach a connection between the devastating assignment of losing a baby (thankfully, something most families don’t experience) and something more relatable — and certainly more comfortable.

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Brad Dell, BioNews’ astute director of columns, helpfully posts a monthly roundup of possible column topics. Each month is chock-full of designated days and weeks; the entire month usually also acknowledges something.

I appreciate the writing prompts and the surprise trips down memory lane they elicit.

October is a full month. Rett Syndrome Awareness Month puts me at Brockman School with Hagen, a sweet little girl in the adjacent classroom. Blindness Awareness Month reminds me of Fallon, a beautiful, tiny girl in my kindergarten class, and Jarvis, my blind, nonambulatory student who gnawed off chunks of a new positioning wedge. Down Syndrome Awareness Month provides an easy reminder of my certification process that included Roger, with his suspenders and two pigs named Fred and Ethel, and twins Richard and Tina. National Spina Bifida Awareness Month takes me back to some of my favorite students: Kimberly (with whom I still keep in touch after over 30 years!), Kent, and Jesse, who simultaneously battled juvenile rheumatoid arthritis.

Respiratory Care Week, Oct. 24-30: Oct. 6 was the 24th anniversary of the horrific “consultation” with a pulmonologist that fast-forwarded Jeffrey’s decline. Addition, the memory remains fresh of our grandson James’ terrifying episode with croup, requiring four nights of hospitalizations in two facilities.

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Epidermolysis Bullosa Awareness Week, Oct. 25-31: During a joint blog venture, Cindy and I searched for other bloggers facing special challenges. We came upon a prayer request for Jonah, a baby with EB who was hospitalized where Jeffrey had been diagnosed with SMA. Jonah is thriving, and his amazing mama, Patrice, is now a fellow columnist!

World Cerebral Palsy Day, Oct. 6: More of my students were diagnosed with cerebral palsy than anything else. Some were mildly affected, others much more involved. When Matthew, our son, visited my classroom on occasion, his happy preschooler self made fast friends. He even began walking with an uneven gait like one of his new buddies!

World Hospice and Palliative Care Day, Oct. 9: Following the nightmarish pulmonologist consultation-that-wasn’t, hospice joined our Jeffrey team. The hospice nurse assigned to help our brave little guy complete his last lap comfortably was perfect.

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This column is cathartic for me. Sharing all parts of Jeffrey’s story will never get old; it’s one of the few things I can do on his behalf.

I hope it’s also helpful to others, whether they’ve been in our exact shoes or not.

So many of us aren’t in Kansas anymore.

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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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