Our son Matthew and daughter-in-law Jill handed me a Mother’s Day card in 2015 with instructions to read it aloud. I didn’t pay attention, however, so my deafening squeals left my husband, Randy, perplexed until I blurted out that we were going to be grandparents.
A critical task on the baby to-do list is choosing the name. When the ultrasound revealed that our first grandbaby was a girl, the name Rebekah Kate surfaced to the top of the list. Rebekah is Jill’s middle name. Our daughter, Katie, went by Kate one year.
We loved the name Rebekah Kate. It sounded fun, smart, creative, and strong, like Jill and Katie.
And then, toward the end of the pregnancy, Jill announced that the name would be Clara Elizabeth. Elizabeth is my middle name and an old family name on my mother’s side. Clara was the name of Jill’s paternal grandmother.
Jill didn’t know and Matthew had forgotten that Clara was also the name of the baby in the old cemetery atop our little mountain near the resting spot of our baby Jeffrey.
Rebekah Kate conjured up visions in my head of a delightfully spunky tomboy in pigtails with frogs in her pockets. Clara Elizabeth sounded suitable for a kind, quiet little girl who loved animals, but not in her pockets.
We ended up with a delightful mix! Vacillating between princess and superhero personas, Clara is thoughtful, pensive, imaginative, animated, smart, and chatty. With frequent trips to St. Jude for blood tests and scans after a diagnosis of Beckwith-Wiedemann syndrome, she has plenty of spunk when the situation demands it.
She is (usually) crazy about her little brother, James, and makes the rest of us a bit crazy when she momentarily morphs into a sulking teen before our eyes. I have yet to see frogs hanging from her tiaras, but she voluntarily hands treats to our slobbery dog. That counts for something.
James would likely have arrived with sticks, rocks, heavy machinery, and perhaps a frog or two if only he’d been birthed with pockets. A pint-sized proverbial bull in a china closet, he is built like a tank and is always on the move. He shows his adoration for his big sis with both heartfelt hugs and gleeful peskiness.
He’s also a cuddly sweetheart. I’ve taken care of Clara quite a bit throughout her 4 1/2 years, but I was responsible for James every school day for over a year when Jill returned to her teaching job. The reward — “MomMom? I wuv you!” — comes often, as does the bonus — when he places his head gently on my shoulder and squeezes me tightly.
James is such a bundle of BOY, I’ve quipped that I think he must be two boys in one.
I like that thought.
I don’t remember when Jeffrey’s name was first brought up to Clara. I do remember trying to untangle the confusion that although he was her uncle, he had been just a baby when he earned his freedom from spinal muscular atrophy. When she grasped that death meant she couldn’t see him in the earthly sense, she embraced his leaving for heaven as casually as if he’d merely left on errands.
She has chatted about Jeffrey on her play phones, drawn pictures for him, and in the beginning, referred to him as her boyfriend (to her credit, she named God as a backup). Recently, upon her first-ever arrival at his special spot on top of our little mountain, she celebrated with her own upbeat song and dance.
She has also played what she dubs “heaven,” which in her imagination is almost as magical as anything “Frozen“ has to offer.
James’ resemblance at birth to his daddy, Matthew, and to his uncle Jeffrey was uncanny. Since Jeffrey and James begin with the same letter, and sleep deprivation was the norm in the early days, it took a massive concentrated effort for me to get it right. Even now, 26 months later, I’ve had to catch myself on occasion.
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I am thrilled that Clara talks easily about Jeffrey, and I fully expect James to be equally curious as he gets older. I’m thankful the subject of death doesn’t frighten Clara, and that Jeffrey’s site is close enough for regular visits and celebrations.
The COVID-19 crisis has provided me with an abundance of MomMom time. While these precious grandchildren will never replace our son Jeffrey, they decidedly help close the gap in that void left so many years ago when their baby uncle donned his wings.
And that is some sweet love story.
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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