Honoring the Siblings in an SMA Family

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by Helen Baldwin |

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Because our daughter, Katie, and son-in-law, Paul, live over five hours away, we don’t see them often. Thanks to last year’s lockdown, we hadn’t seen them in 10 months when they pulled off a surprise visit for my birthday last May. That long weekend was stuffed with good food and enough laughter to fuel us for a few more months.

Katie and Paul returned last weekend for a quick visit before the commencement of school chaos. They stayed just down the road with our son Matthew and his family, which includes our daughter-in-law, Jill, and their children, Clara and James, and my mother; it was sorta like one-stop shopping! Katie and Paul brought books for Clara and James and “spa day essentials” for Clara before she begins kindergarten next week.

The effort Katie and Paul made to get here to spend time with the family was the best gift. There was plenty of laughter as usual, and since they both have August birthdays, we celebrated in person!

What a blessing it is to enjoy our children and their families, at any time.

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***

My husband, Randy, and I had never heard of spinal muscular atrophy (SMA) when our baby Jeffrey was diagnosed with the deadliest form of it 24 years and one month ago.

The neurologist handed Randy and me the news of a devastating set of circumstances. As the doctor explained SMA, my optimistic self quickly reasoned that we’d just make our old farmhouse accessible. It wouldn’t be easy, but surely there was a way. And I could draw from my teaching experiences at Brockman School, whose students had orthopedic and other challenges. God really does work in mysterious ways.

The neurologist proceeded to pack an extra punch. Jeffrey had Werdnig-Hoffmann disease, or SMA type 1, the most severe form of SMA known at that time. Babies with type 1 have severe muscle weakness that affects movement, sucking, coughing, swallowing, and breathing.

My optimistic self stumbled.

For the grand finale, the neurologist moved on to the prognosis: “No cure or treatment.” My own breathing muscles struggled mightily.

And then Randy and I, with Jeffrey in my lap, were hurled into the proverbial black hole. “Death usually by four years” (which was revised by the genetic counselor the following morning to “two years”).

I attempted to grapple with what I thought we’d just heard. Death? By four?

Our baby?

We would somehow have to regroup and tell the rest of the family, including Jeffrey’s doting siblings, Matthew and Katie.

***

August is SMA Awareness Month. It’s the one month of the year when I try to post daily on my Facebook page. Other than August, the only posts I usually make are links to this column. I can see how folks get hooked on Facebook, but there’s usually not much time for that. August, however, is a different story.

I missed two days of posting while Katie and Paul were here (not their fault). As I have done before, I checked Facebook to see what I might be able to share. A member of the SMA community shared something that jumped right out: “If you want to know how to treat someone with a disability, watch their siblings.”

Perfect.

***

When Randy and I decided to let Matthew and Katie in on the big baby surprise, we shared the ultrasound.

Matthew, our responsible, conscientious firstborn, was speechless with disbelief. Speechless. Katie, his carefree, fun-loving little sister, couldn’t contain her own disbelief, squealing over her good fortune.

When Jeffrey was born, both Matthew and Katie treated him like royalty. Matthew loved seeing Jeffrey’s new daily accomplishments, while Katie loved holding him and reading to him.

They were the best siblings.

***

We had two “normal baby” months before SMA changed all that. Besides taking care of new baby matters, I was soon thrust back into the skilled nursing mode of my final year at Brockman, often pondering whether an “incident” was SMA-related or simply normal.

The diagnosis warranted a crash course via the internet and its accompanying links. My head spun with the information I unearthed. Trying to absorb as much as possible without losing it completely kept my head spinning.

It’s a miracle it didn’t spin right off.

Meanwhile, Matthew became increasingly protective of his baby brother, checking every afternoon to see what kind of day Jeffrey had. He wondered how we were going to tell him if something happened while he was at school.

Katie couldn’t get to Jeffrey fast enough when she came home from school. She spent more of her time enjoying him instead of worrying — out loud, anyway. She explained SMA in impressive detail to the school counselor, who said Katie comforted her.

It wasn’t easy, but Matthew and Katie continued to be the best siblings as their baby brother’s time with us drew to a close.

They’ve grown up quite nicely, 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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