How I’m dealing with death, purpose, and, of course, signs

As a mother loses her son with SMA, I remember my own loss and lessons

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by Helen Baldwin |

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Unlike most days when I draft my column, I had this one all figured out. Recent brain sparks of potential topics provided me with such confidence. I plopped down at the computer earlier than usual on Sunday to tend to a few odds and ends before getting down to the business of writing.

After knocking out a few necessary tasks, I opened Facebook to access my messages. As I read the first post on my timeline, my column plans fizzled.

I shouldn’t have been surprised.

Optimism comes in handy

I’m grateful my optimistic nature generally enables me to identify specks of positivity in tough circumstances. It may take a while, and sometimes a single speck seems awfully minuscule, but it’s there.

Granted, on the evening of July 14, 1997, finding anything remotely upbeat was nowhere on the radar. My husband, Randy, and I were blindsided by news that our third baby, Jeffrey, likely had one of the deadliest forms of SMA.

As surreal as that conversation felt, it paled in comparison to the next morning’s horrors to confirm the diagnosis. The chest X-ray, blood draw in Jeffrey’s forehead, and EMG were beyond excruciating. When the tests mercifully ended, I was thankful that Jeffrey, Randy, and I were relatively upright and going home.

Home to what remained to be seen.

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Grappling with the horrible death of another family’s child

Blessings from a deadly case of SMA

The blessings from Jeffrey’s brief earthly stint continue. There are many! Finding some heavy-duty friendships vies for the top spot, as does observing the phenomenal power of faith and prayer “in real live” (as our grandson, James, puts it).

Communicating with other SMA families after the diagnosis was also instrumental in keeping me upright. Some had already lost children while others’ journeys resembled our own. Because of the extraordinary support from fellow warriors, I soon felt increasingly comfortable boosting the families of those newly diagnosed with SMA type 1 in whatever way I could.

I also didn’t hesitate to respond when those babies snagged their wings. It was the ultimate opportunity to “pay it forward.”

The end of another’s SMA journey and organ donation

The SMA mom’s Facebook post greeting me Sunday morning was sobering. Her son, Connor, born five years after Jeffrey, had experienced several medical crises while hospitalized over the previous few days. As graciously as possible, she announced that Connor’s battle with SMA was ending that afternoon and that his organs would be donated.

Crushed at the update, I was instantly zapped back to our first home health visit shortly after Jeffrey’s diagnosis. Trying desperately to think of good that could possibly come from the devastation, I asked the nurse about organ donation. She thought Jeffrey would have to be hooked up to monitors in the hospital at the end, but she’d check.

As I’d started praying that we could manage whatever happened at home, organ donation was probably out.

Fast forward to Oct. 6, a day from hell. Jeffrey went into respiratory arrest at a consulting pulmonologist’s office, sending us via ambulance to the nearby emergency room. After a second respiratory crisis there, Randy and I were summoned to the office to discuss whatever one discusses when the situation heads perilously south in a heartbeat. At that moment, my lone positive vibe centered around the possibility that maybe we we were there to donate Jeffrey’s organs after all. That consoled me to only a minimal degree, but I grabbed the thread and held on for dear life.

We ended up being moved to a room for the night. As soon as Jeffrey was placed gently on the oversized bed, Randy left the room to muster some composure. Our sweet baby then went into respiratory arrest for the third time.

I just wanted us all to go home, including Jeffrey. Thanks to prayers and the impromptu arrival of my physician brother, Paul, we managed that the next day. And we stayed put until our assignment ended less than a month later.

Tragedy strikes even grief experts

I checked for updates about Connor and read some heartfelt tributes to him and his devoted family. I stumbled upon videos addressing the tragic deaths of two young adults. David Kessler, a grief expert and author, and Rick Warren, former pastor and author of “The Purpose Driven Life,” each lost a son unexpectedly. Although both counseled others in times of death and grief, neither was remotely prepared for their immense personal loss.

According to Warren, however, “Your greatest ministry will come out of your deepest pain.”

The SMA community is a prime example. Despite plentiful joy and hope provided by treatment options, heartbreak is a given with this insidious disease.

Remarkably, so are gratitude and the desire to ease the paths of others.

Purple: a perfect sign of celebration

Connor’s mother asked folks to wear purple, his favorite color.

I thought of the purple lollipop verbenas swaying on our deck and was thrilled to see that the purple balloon flowers had opened up on Sunday. What a perfect sign of celebration for Connor’s heavenly flight!

I shouldn’t have been surprised by that, either.

Green potted plants, several with long stalks with purple flowers on top, sit on a weathered deck with a railing. Green trees and grass and a lake are seen nearby.

This month’s lollipop verbenas: a hearty (and purple!) favorite of pollinators. (Photo by Helen Baldwin)

A close-up of one green potted plant with a few purple floors. We can tell it sits on a weathered deck, with grass just beyond.

Balloon flowers that popped open July 9, the day Connor, a young man in the SMA community who loved purple, snagged his wings. (Photo by Helen Baldwin)

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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