Not All Gifts Are Wrapped in Shiny Paper

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by Helen Baldwin |

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December is replete with giving opportunities in the form of holiday presents, donations, and volunteering with myriad charitable causes, making its designation as National Giving Month apt. It’s a natural extension of Thanksgiving.

Virtually anything can be a gift. Any time.

***

My husband, Randy, and I are PopPop and MomMom to Clara, almost 6, and James, almost 4. Last Christmas, I made a counting book for James to accompany the ABC book I’d made for his second birthday. I’d made similar books for two nephews, and Clara’s eagle eyes noticed.

Clara: “Are you going to make a book for me?”

Me: “Oh, just wait! You’re getting a princess book, and it will be the biggest and best of all!”

The much-anticipated book turned out to be three books. I handed them over to our resident princess the week she started kindergarten … in August. Arghhh.

Lack of time forced me to return this year to the old-fashioned way of gift-giving: just buying them.

Online shopping is handy; however, I don’t like buying things I can’t see and feel. Consequently, looking for gifts occasionally makes me want to pull my eyeballs out. When I think I may have discovered a seemingly perfect item (something the kids would like, not insanely expensive, at least sorta educational, and guaranteed to arrive in time), I scroll to the reviews: “Much smaller than the picture suggests, color not accurate, broken when it arrived, broken within five minutes, DON’T WASTE YOUR MONEY,” and on and on. I scroll enough to see if the specific complaints will matter. If so, the search continues. Groan.

The choices seem to stretch into infinity, but I think I may have finished. That’s my gift.

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***

Our third baby, Jeffrey, arrived in May 1997. Perfect like his older siblings, Matthew and Katie, Jeffrey’s appearance two weeks ahead of the due date explained his smaller size. Maybe it also explained why he wanted to sleep all day after he was born.

Or maybe not.

A bizarre fog enveloped me the first two months after Jeffrey’s birth. I functioned adequately, but something wasn’t quite right.

That’s one way to put it.

Concerned about Jeffrey’s abdominal breathing, Randy asked my physician brother, Paul, to examine him. Paul found no reflexes and a dull-sounding lung. He said the pediatrician would probably refer Jeffrey, at his scheduled wellness checkup the next day, to a pediatric neurologist. To make sure no precious minutes were wasted, Paul called the pediatrician the following morning. He was on the phone with her when we arrived for our appointment.

Unbeknownst to me, Paul had scoured the internet the night before. He determined what Jeffrey likely had and shared his findings with the doctor.

By then, my fog was gone, and I was pretty terrified. I couldn’t imagine what was coming next.

What came next was a diagnosis of SMA.

The gift of optimism nudged me forward.

***

Last year at Thanksgiving, Matthew and his family were quarantined for two weeks after being exposed to COVID-19. It was memorably not fun.

This year made up for it. Matthew, our daughter-in-law, Jill, Clara, and James spent time over several days with Katie and Paul, our son-in-law, and cousins from Jill’s side. On Thanksgiving, Paul and almost his entire brood (10 of 11!) miraculously pulled off a visit. With several little ones in tow, and it being the first visit with some family members in two years, there was a bit of bedlam.

At one point, James looked like he needed a breather, so I went with him into his room. I asked if it bothered him that his cousins were playing with his toys. He assured me it was OK.

But he had a request. “MomMom, I think I just need to watch a stampede on your phone.”

Who knew a stampede video could provide a gift of fortification for the commotion in the next room.

***

Learning that Jeffrey had SMA and wouldn’t be with us long in the earthly sense packed a wallop. With zero optimism from the medical experts, we searched for miracle treatments and sought consultations.

Oh, and pondered a funeral.

Randy had just started a carpet dry-cleaning company when Jeffrey was diagnosed. An early job was at a local funeral home, where Randy formed an immediate bond with the young director. He told Gary about Jeffrey, alleviating a tiny bit of dread about the inevitable.

While cleaning in a room of new caskets, Randy wondered if a tiny white one would be Jeffrey’s.

A few months later, Randy called to let Gary know the time was coming. He probably asked about the fee.

Because the death of a child was traumatic enough, all fees were waived. It was called their Cherub Service — or as I consider it, angel intervention.

And that’s a gift any time of the year.

***

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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