How joy and sorrow have marked our years of birthdays

When I checked my email last Wednesday morning, I was delighted to see a message in my inbox titled “Birthday Memories.” It was from my husband, Todd, who was still in bed sleeping; he must’ve scheduled the email to surprise me on my 48th birthday. I sat down with my breakfast and opened the message.

He’d compiled pictures of my birthdays over the years, starting in 2006 with a picture of me with my mother, grandmother, and 6-month-old baby girl. Todd and I had met in 2002 and got married in 2003, but we didn’t get a digital camera until that year — so that’s when the digital record of our life begins.

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In that year, my parents, grandma, and cousin visited us in Wisconsin, where we were then living (we’re Michiganders now). We were just five minutes from Todd’s work.

Kristin Neva celebrates her 30th birthday. (Courtesy of Kristin Neva)

I turned 30 the following year, and Todd included a picture of me with a Finnish filled cake of two layers, moistened with fruit juice, frosted with whipped cream, and covered with raspberries, strawberries, and blueberries. It was the same kind of cake that we had for our wedding, but by then I was on a gluten-free diet, and Todd had figured out how to make that version delicious.

For 2009, Todd included a picture of our then-3-year-old daughter and me in matching aprons that he’d purchased for my gift. At the time I was very pregnant with our son.

The next year, our world turned upside down. Todd was diagnosed with ALS that June, the month before my birthday. Above a picture of me blowing out my birthday candles, Todd wrote, “I know what you were wishing.”

I know what I was wishing, too. I was wishing the diagnosis was wrong. Wishing it could be anything other than ALS causing Todd’s weak arm. Wishing he would be healed. Wishing we could get our life back.

But the ALS diagnosis was confirmed at the Mayo Clinic the following month, and we began adjusting to a new normal — one that didn’t last long before the disease progressed some more. Todd was losing strength, and he began to have difficulty dressing and grooming himself. He grew out his beard and shaved his head to make life easier.

Todd Neva sits on the North Shore of Lake Superior. (Photo by Kristin Neva)

In July 2012, we visited Todd’s parents in northern Minnesota. On the way there, we spent a night on the North Shore of Lake Superior and visited Gooseberry Falls State Park. Todd was still walking then, but his arms had visible atrophy.

I remember being overwhelmed on that trip, desperately trying to make memories while we still had time, even as I grieved what was coming. Our kids were overtired and acting up, and I told Todd, “You can’t die and leave me alone with these two.”

To help capture memories, Todd upgraded his camera. He’d wanted a nice camera for years, so it was a “bucket list” purchase. For a couple years after that, we had photos from my birthday, but then the number of pictures dropped off after Todd could no longer hold his camera.

We got our dog, Comet, in 2013, the year after we’d built an accessible home near my parents in Upper Michigan. Todd included a picture of me holding our 10-week-old puppy wrapped in a bath towel after I bathed him in Todd’s roll-in accessible shower. Todd captioned the photo “new house, new baby.”

Kristin Neva bathes Comet, then only 10 weeks old. (Courtesy of Kristin Neva)

We made it out to celebrate my birthday at McLain State Park in 2020 and again in 2022.

As I looked back at the pictures from over the years, I reflected on how I went from being a young mom brimming with hope for the future to being a middle-aged mom trying to find joy in simple things while holding on to hope for our kids’ futures.

That trip down memory lane was filled with joyful sorrow as I reflected on all that we’ve experienced in our 15 years with ALS. There was so much grief and trauma — but there were good times, too.

Last Wednesday evening, we made another birthday memory.

My mom joined Todd, me, and our kids for dinner, cake, and presents at home. And then we had a family movie night. I picked “A Beautiful Day in the Neighborhood,” in which Tom Hanks plays Fred Rogers in a biographical drama of grace and forgiveness.

It was a beautiful day, indeed.

Note: ALS 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 ALS News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to ALS.