Our third baby, Jeffrey, shook things up from the moment the nurse at the doctor’s office exclaimed, “You’re pregnant! You’re very pregnant!” She seemed exceptionally delighted to announce the confirmation. Although my husband, Randy, and I were shocked at the news of having a newborn in middle age, there had been enough suspicion on my part to have a pregnancy test done. We were not knocked totally off our props.
That would come a few months later.
All baby items, save for a few favorite outfits and the crib, had been given up long ago, so we were starting from scratch. Our daughter, Katie, and I spent a fun day, and more than a few pennies, shopping for newborn essentials. When Jeffrey arrived two weeks earlier than expected, we were ready enough. He was greeted with loving arms, doting siblings, and whatever else we thought he needed. After his arrival, when long-distance skeptics realized we hadn’t been kidding about the midlife baby news, we were blessed with more gifts.
A routine fell into place without too much commotion. Jeffrey was a happy baby, always particularly delighted to reap the attention of Katie and his big brother, Matthew.
Two months into our new routine, our props were legitimately knocked away as we added spinal muscular atrophy (SMA) to our vocabulary.
We would realize one day that the real gift was Jeffrey.
Before the SMA diagnosis, life as we’d known it was comfortable. Perhaps not financially, but the stress was mostly typical. Randy’s position as a high school football coach provided seesaw moments of sanity and stability that could turn hairs gray, but we accepted it as part of the job. Adaptability was the name of the game.
And then came SMA. Hoo boy.
The only thing predictable about life with SMA was its unpredictability. Once we adjusted to the new “normal” after being handed our SMA assignment, we learned to hang on tight to one another, our faith, and our increasing reliance on prayer. A good day, defined as nothing extraordinarily catastrophic, was followed either by another good day or one that left us limp. As our brief assignment inched forward, we played it by ear, moment to moment.
We continued to hang on.
After Jeffrey’s death at 5½ months, we shifted from active duty to recuperative duty.
Hoo boy, Part 2.
Writing these columns serves as continued catharsis, still beneficial 22 years after Jeffrey snagged his wings. Considering the emotions unleashed in this column the past few months, I think it’s perfectly reasonable to expect the phase of healing, recuperation, and grieving to linger until my earthly time is up.
I’m grateful I don’t feel compelled to do it huddled in a dark corner.
Part of losing a baby includes treasuring the few pictures or mementos collected over such a short span. While writing “The Jeffrey Journey,” I dug up the notes I’d started keeping during our assignment and came across some other treasures: the four announcement letters we sent (“Don’t Faint — We’re Pregnant!,” “He’s Here!” “Prayers, Please!” and “Angel Jeffrey”), medical bills, funeral notes, and an empty — yes, empty — bottle of goat milk lotion from a post-funeral stop at Cracker Barrel.
Not typical baby book fare.
This Thanksgiving weekend, while digging out the last of the baby clothes to hand over to a local charity group, I came across a rubber ducky, bib, and spoon we’d received from the hospital at Jeffrey’s birth. There were also two pairs of baby shoes, one with Matthew’s name and birthdate, and one with Jeffrey’s. It is fitting that there were no shoes for Katie, as she didn’t wear any until after her first birthday.
I didn’t flinch at the ducky, bib, or spoon. Those shoes, though.
Jeffrey never wore them, but for some reason my eyes have welled up ever since just thinking about them.
Maybe it’s because he never needed shoes.
Maybe it’s just that it was the last typical baby keepsake I pulled out of the box.
Maybe it’s because it’s Thanksgiving weekend, with a focus on how thankful we should be: Jeffrey may no longer be with us, but he’s eternally safe and happy!
Maybe it’s because we’ve been privy to numerous signs these past 22 years that I’m not imagining Jeffrey’s presence in his absence.
Maybe it’s just because.
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.
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