Finding moments that transcend the grief of ALS

A few months after my husband Todd’s ALS diagnosis, we traveled with our children from our home in southeast Wisconsin to meet up with Todd’s sister and brother-in-law at a rented condo overlooking Lake Delton in Wisconsin Dells.

We had recently returned from Mayo Clinic in Minnesota, where Todd went to get a second opinion. Our hopes for any diagnosis other than ALS had been dashed, and our new reality was setting in.

Todd and I stayed in the condo with our sleeping baby boy while Todd’s sister and brother-in-law took our 4-year-old daughter down to the pool.

While our son slept, I sat with Todd in the screened-in balcony overlooking the lake, trying to process my thoughts and feelings in my journal.

When our son woke up, I brought him out and we cuddled on a couch. Puffy white clouds were scattered about a deep blue sky, and for a moment, I felt OK again. I was able to step out of the grief of the diagnosis and just be in that moment.

Todd recounted this trip in our memoir, “Heavy.” “On this day there was no problem,” he wrote. “We were learning to take life one day at a time.”

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Where I wanted to be

That was 16 years ago. In the years since, I’ve lived with a steady background hum of grief and stress for much of the time. Every once in a while, though, I transcend the hum.

One of those moments happened last week. It was a beautiful 76 F, sunny, September day. After I fed Todd lunch, I rolled him out onto our back patio. I parked his wheelchair next to my planters of strawberries, gerbera daisies, and zinnias. I reclined Todd back, adjusted his head, and lifted his footrest. And then I pulled my hammock frame across the yard to the grass on the other side of the planters.

I lay in the hammock with a book of poetry and my journal. I was able to be free of my phone because Todd was right next to me. I didn’t need to be on alert, waiting for a call from him. And he was napping, so he didn’t need me to scratch his itches, move his arms, or adjust his nasal pillows.

I listened to crickets chirping as my hammock rocked in the breeze. Puffy white clouds were scattered above in the deep blue sky. On this day, there was no problem. I was right where I wanted to be.

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