May Baby, Special Delivery

I’m a May baby (actually, May senior citizen is a bit more accurate). I love having a May birthday. From wrapping up spring semesters before my birthday way back in college, to getting back to outdoor activities after winter confinement, and to my birthday falling on the heels of Mother’s Day, I couldn’t have picked a better month.

On my 40th birthday, my mother and I performed the accompaniment for a local high school performance of “Kiss Me, Kate.” Randy, the school’s head football coach (and my husband), volunteered our services when he learned the previous accompanist had quit. It was a thrill for us and the talented student cast when Mom’s two personal digital grand pianos were transported to the auditorium for dress rehearsals and performances. Our collaborative efforts provided us all with a micro-nibble of Broadway’s electrifying draw.

After our impressive feat, I felt confident that 40 signaled the beginning of some remarkable, memorable events on down the road.

Boy, howdy.

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A little over a year later, our family purchased a lodge and cabins on the stunning Blue Ridge Parkway. My parents became official innkeepers in September 1995, and I began the daily trek to help whip it back into acceptable shape. Randy and our children, Matthew and Katie, joined in on the weekends, and my brother and his family came whenever possible to boost the efforts. It was grueling yet fun and surreal to be surrounded by the spectacular beauty of the historic Parkway.

Three months later, Randy and I moved into an old farmhouse five miles from the lodge. On our new property was a little mountain. Our first hike to the top revealed quite a surprise: a cemetery. The cemetery was so old that most markers were rocks etched with undecipherable scrawls.

A typical marker in the old cemetery. (Photo by Helen Baldwin)

A “modern” marker identified a 5-month-old baby named Clara. We were understandably oblivious to its significance in what lay ahead, but it didn’t matter. We wouldn’t have believed it, anyway.

Baby Clara’s marker. (Photo by Helen Baldwin)

In the fall of 1996, Randy and I jokingly credited the “fertile mountain air” for our surprise pregnancy. On May 18, 1997, three days after my 43rd birthday and two weeks earlier than anticipated, our bonus baby made his appearance.

Jeffrey was an easy baby; he loved to snuggle and never raised his voice above a whimper. There was no need for him to exert himself, as his staff remained extraordinarily attentive to his needs. Matthew, most relieved his baby brother didn’t arrive during my classroom volunteering stints, made sure all was in order with his baby brother. Katie doted on Jeffrey in all ways, reading to him in his cradle and cuddling and feeding whenever possible.

Baby Jeffrey rocked our world!

Spinal muscular atrophy walloped it.

Matthew, Jeffrey, and Katie. (Photo by Helen Baldwin)

Life from the diagnosis date in mid-July to the night Jeffrey snagged his wings at 5 1/2 months was a roller coaster. Tending to Matthew, Katie, and a new business as we frantically tried to squelch the wrath of SMA was doable only by a lot of prayer and support from family, friends, fellow SMA partners, and other earth angels.

Jeffrey’s special spot is on top of our little mountain, not far from baby Clara’s.

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Five months after Jeffrey’s death, Randy and I opened a bakery and sandwich shop in a thriving tourist spot a few miles from home. I’m still not sure what led us to believe that was a smart move, but we did it and survived! It proved to be an immediate success and served as a welcomed distraction and balance to the devastation of our SMA assignment.

Five weeks after opening was May 18, Jeffrey’s first birthday.

To say that acknowledging his birthday without him was excruciating barely nicks the surface. I wanted to curl up in a corner that day on more than one occasion and just let the tears gush. Thankfully, slinging sandwiches and cinnamon rolls kept us occupied, and donations to the Chunk Your Change for Charity jar came at a steady pace.

That was 22 years ago.

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Like all mothers who have lost children, I wonder what Jeffrey would be doing if he were still here. Sometimes I think of him as the baby he was when he left, sometimes as the adult he’d be if he hadn’t. He’s always beaming and perfectly healthy in my mind, which I’m confident is exactly how he is now.

I won’t be looking for a sign because they tend to appear when I’m not looking for them. Jeffrey’s been mighty good at sending them over the years, though, so I’m eager to see what might be on tap this year.

Twenty-three years.

Happy heavenly birthday to our incredible May baby.

Special delivery, indeed.

Jeffrey. (Photo by Helen Baldwin)

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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 Services, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.