From teacher, to parent, to SMA parent, to grandparent
Watching my grandkids grow up brings back memories of my SMA assignment
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My goal in college was to become a special education teacher. I had a dream work-study job at a nearby elementary school, assisting in two special ed classrooms.
My career plan derailed slightly when I married, moved, and resumed studies at a university without a special education department. Several years later, my husband, Randy, and I both returned to school for teacher certification.
Randy’s coaching offer required a move from our native Fort Worth, Texas, to Columbia, South Carolina. I was hired as a kindergarten teacher at Brockman School, a self-contained school for students with various diagnoses and disabilities.
It would be an ideal placement.
Family expansion
As much as I loved Brockman, life became even sweeter with the arrival of our first baby. Matthew was perfect for us first-time parents. He was easily soothed with milk, a diaper change, and lots of snuggling.
Three summers later, Katie arrived. Equally beautiful, she came equipped with a full-blown independent streak. She was a perfect complement to Matthew’s easygoing nature.
Our family moved to the mountains of North Carolina when Matthew was 9 and Katie was 6. Our new rural life wasn’t the only adjustment; we were soon floored to learn we’d be welcoming a new baby!
Thankfully for his middle-aged parents, Jeffrey was a breeze. His cries, coughs, and sneezes were whispers. He drifted off to dreamland after nursing for only minutes and never wiggled during diaper changes. He was exceptionally easy.
Two months later, we learned that Jeffrey’s extraordinarily placid behaviors had a name: spinal muscular atrophy (SMA), in its deadliest form. SMA’s status as the leading genetic killer of children under 2 would keep our precious baby from reaching his first birthday.
Our brief SMA assignment
Matthew and Katie were perfect siblings for Jeffrey. Matthew was a reserved, conscientious big brother, eager to hear after school that Jeffrey had a good day. Balancing Matthew’s calm demeanor was Katie, squealing with enthusiastic gusto as she rushed in from school to pump her baby brother’s legs. It was obvious from his expression that he adored them both.
Our SMA assignment initially consisted of digging online for information, alternative treatments, and fellow SMA families. Suctioning, something one of my Brockman students had required daily, soon commanded the spotlight.
Randy and I experimented with alternative treatments until Jeffrey had enough. I begged, “Just one more,” when the opportunity arose to meet with a pulmonologist treating another little boy with SMA. The meeting did not go well, however. We ended up in the emergency room before being admitted overnight. Upon our return home, our home health nurse recommended hospice.
Our SMA assignment ended on Nov. 4, 1997. Jeffrey wasn’t even 6 months old.
Grandchildren!
Matthew and Katie grew up and headed to college. Katie moved to South Carolina and married, while Matthew married and moved to Virginia. And then Matthew’s first child — our first grandbaby — arrived.
In 1997, Jeffrey was cozy in the cradle Randy made. (Photo by Helen Baldwin)
Clara was a cutie with a bubbly personality to match. It was a cinch for Randy and me to take our new roles as doting grandparents seriously. I frequently stayed several days to care for Clara when her regular babysitter couldn’t.
Tears flowed while I rocked Clara as she approached 2 months, the age at which Jeffrey was diagnosed with SMA. More tears flowed as she approached 5.5 months, Jeffrey’s age at his death.
All was good with Clara until she was diagnosed with Beckwith-Wiedemann syndrome at 11 months. Despite her mild case, she had to be monitored every six weeks at St. Jude Children’s Research Hospital for liver cancer and every three months for kidney cancer until she turned 8. She’s now 10 (!) and sees only an orthopedic surgeon for routine checkups.
A month after Clara turned 2, she became a big sister to James. By then, Matthew, our daughter-in-law, Jill, and Clara had moved down the road. Their proximity to us was a win for all, especially when I took care of James and sometimes Clara during his first year.
Our grandson, James, looked equally cozy in 2018. (Photo by Helen Baldwin)
James’ uncanny resemblance to Jeffrey at birth led me to inadvertently call him “Jeffrey” numerous times in the beginning. As he grew, so did the bond between us. I commented several times that he was like two little boys in one: hugging me fiercely one minute, tackling me fiercely the next. As with Clara, the tears flowed freely when James turned 2 months old, and again as he neared 6 months.
James loves sports and has apparently inherited a knack for them from Randy and Matthew. As rowdy as this sweet little tank can be, his “MomMom!” gets me every time. I’ve wondered if he might also share some of his baby uncle’s traits that we didn’t get to see.
At the end of January, our boisterous “two-in-one” grandson turned 8. Recent winter storms delayed his birthday party until this past Sunday.
I like to think that Jeffrey was celebrating, too.
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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