James Taylor and praising the village of rare disease friends

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by Helen Baldwin |

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I have a gift inherited from my late musician mother. Simple melodies or complete orchestral scores, favorite old songs, two-piano music we played, my own original tunes, or a conglomeration of all of the above play inside my head, on demand or out of the blue.

James Taylor’s version of “You’ve Got a Friend,” a favorite singalong from long ago, has been popping up lately.

You just call out my name
And you know, wherever I am
I’ll come runnin’

While I usually don’t know what sets a song in motion, this time I credit a little angel invention. For one, my dad’s birthday was Monday, Feb. 13. If there was anyone who would drop everything and “come runnin’” if you needed something, it was Dad. Long after his death in the summer of 2006, I fully expected him to pop around the corner with his signature chortle. Judging by the tears pooling up as I write this, I either still wouldn’t be surprised, or know that he probably won’t.

This particular song sparks another memory: the connection to fellow warriors after our baby’s rare disease diagnosis sent our family spiraling into a big black hole.

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Gaining experience I didn’t realize I’d need later

After college graduation and several years of gainful employment in Fort Worth, Texas, my husband, Randy, and I both decided to return to school for teacher certification. Randy started first, while I tested the waters as a substitute teacher in self-contained schools and self-contained classrooms in regular schools. The generic special education certification I then earned enabled me to teach students with extra mental, physical, and emotional needs. Unsurprisingly, the eye-opening year of subbing in demanding situations fortified me way more than the certification.

Upon Randy’s acceptance of a plum coaching offer in Columbia, South Carolina, we headed east. I interviewed at three self-contained schools, favoring one because of my past experience. God loves to surprise, though. I was hired as a kindergarten teacher at the self-contained Brockman School for students with orthopedic and multihandicapping conditions. My single certification class in this area, combined with subbing assignments at Jo Kelly School in Fort Worth, had to suffice for expertise.

The panic eased a bit when I met my assistant and saw my students filing in with their pint-size wheelchairs, walkers, and crutches. My assistant was wonderful, and my new charges were adorable.

I was a certified Brockman Bear.

‘If the sky above you/ Grows dark and full of clouds’

Working with children with special needs was instrumental in ways I wouldn’t discover until it hit home. I learned how to suction, tube-feed, document seizures, improvise, and celebrate the tiniest of achievements. It was never dull.

A job change after six years steered us to Lenoir, North Carolina. When my folks, who had followed us from Texas, became innkeepers at the family’s newly acquired lodge on the Blue Ridge Parkway in the fall of 1995, Randy and I moved closer to help out.

God graced us with an “I didn’t see that coming” bombshell not long after our arrival — an unplanned pregnancy. That wasn’t all, though. Just as we steadied our new-baby props, a diagnosis of SMA (and prognosis of death by age 4) knocked them to parts unknown.

At the urging of my doctor brother, Paul, and as initial shock morphed into survival mode, we signed up for internet. My tech-dense self navigated tangled internet mazes until I stumbled upon the former Families of SMA (now Cure SMA) website and the coveted feature: the message board.

And the grand prize? Discovering we were not alone.

The necessity of the village, aka the value of learning you’re not alone

It took only one click on the message board for us to feel immense relief, gratitude, and reassurance. The value of knowing that others had already traversed the SMA path and that fellow newly diagnosed families walked beside us defies description. Our neurologist had volunteered nothing about an SMA support group. Without my Brockman stint, I likely wouldn’t have thought to ask about one, and that still makes me cringe. Establishing bonds with fellow SMA families is absolutely essential.

I don’t know how anyone without a firm belief in God survives devastating circumstances. Likewise, I’ve wondered how families endure crises without some kind of connection with those who really understand.

When our granddaughter, Clara, was diagnosed with Beckwith-Weidemann syndrome (BWS), a disease even rarer than SMA, my first contribution was finding online BWS groups.

The need for a village when it comes to rare diseases cannot be overstated.

The importance of rare disease awareness

With treatment options for SMA now, miracles abound. Videos of babies and toddlers diagnosed with type 1 (like our son Jeffrey) demonstrating typical age-appropriate accomplishments are mind-boggling!

SMA is not cured, however, and deaths in the SMA family remain too frequent, often somewhat unexpected, and always tough. Fellow SMA families, knowing that on any given day it could be their child, rally around angel families with genuine, loving support.

Such reinforcement should be readily accessible to everyone.

Rare disease awareness — it matters.

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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