Of touchdowns and togetherness: Creating the moments that define us
Gathering together with family was the best week of my husband's life
On a snowy morning three years ago, in Ann Arbor, Michigan, my late husband, Jeff, sped the entire length of the University of Michigan football field in his blue power wheelchair. Light snow was falling as his brothers and I watched him fly down the field, a flannel blanket around his lap, his expression one of pure and utter joy. The scene was one of the most magical of my life, a moment I will never forget.
We were on a scheduled public tour of the awe-inspiring stadium, affectionately known to fans as “The Big House.” It’s the largest stadium in the United States.
I’d set up the tour as a surprise to Jeff, a hardcore Michigan football fan, while we visited family in Michigan in early March 2020. But when our small group of five arrived at the stadium, we discovered to our delight that we were the only fans on the tour, essentially making it private. We explored the stadium in wonder and awe, three die-hard Michigan fans and their wives.
Our morning at the stadium was the last full day of a week spent immersed in the company and love of family and friends, a week I now think about more like a summer camp for grown-ups.
Jeff and I lived in Maryland, and I’d driven us to Michigan in our mobility van so that we could spend uninterrupted time with family there. The journey itself was ambitious. Jeff’s ALS was advanced, making the trip all the more important. I remember now that our packing list of medical supplies covered the full front and back of a sheet of notebook paper, without exaggeration. It was at least 100 items long.
Once in Michigan, we moved into his sister Janet’s spacious dining room. She’d graciously offered her new home as the site for this gathering, with some family members occupying different bedrooms and others coming to visit daily. She’d rented a hospital bed and Hoyer lift for us, and thoughtfully put up a partition screen so that we’d have some privacy if needed.
As it turned out, privacy wasn’t needed. Janet’s house was teeming with people and love. Each morning, we’d all assemble in the large living room, collectively sharing stories and memories. We’d spend the entire day, and well into the evening, basking in each other’s company and laughing. We’d share, too, in caring for Jeff, taking turns with his meals, medications, and personal care needs.
There was no sadness that week, only gratitude and joy for the time together. We made new memories, too — new inside jokes, new stories, and new beginnings, as Jeff’s daughter shared with him that week the incredible news that he was going to become a grandfather to a baby girl.
When the time came to leave Janet’s house, driving back to Maryland was tough. It was hard not to compare this drive to the dozens we’d done together before along this route, Jeff always driving his blue pickup while we talked, joked, and planned our future. This time, as I pulled our mobility van out of Janet’s driveway, Jeff was crying. Realistically, we both knew he likely wouldn’t see some of his loved ones again. That feeling was wrenching.
“That was the best week of my life,” Jeff told me via type-to-text as we rode down the street toward home.
I reflect on that moment, and those words, often. I think about the simple beauty of gathering together — no agenda, no grand plans, just people we love making time to be together, taking an opportunity that might not come again. Of all the things Jeff had experienced in life — an exciting career, world travel — his favorite had been a week with his family while living with ALS.
A week after we arrived home, COVID-19 gripped the country and lockdowns went into effect. Visits with friends became unsafe and impossible; even our ALS clinic had to suspend in-person appointments. We’d been so lucky in our timing, as the trip to Michigan couldn’t have happened even a week after we returned home.
I think often about how ALS robbed Jeff of the chance to meet his granddaughter, attend more Michigan football games with his brothers, and keep fishing on his beloved Green Lake. I think about how it robbed us of the chance to grow old together in a peaceful spot on a creek as we’d always imagined.
And then I think, too, about the gifts we were given — the perspective to understand, for us, what was really important in life, and his courage and dignity and joy in making those moments happen. Jeff’s Big House touchdown — late in life, in a wheelchair, in the snow — will eternally symbolize this for me.
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Very uplifting, yet so sad. When will we have a cure? Julie I love your stories and how you bring them to life
Juliet, Thanks so much for sharing your story. My husband was diagnosed in November 2022. watchig him decline is breaking my heart. He still walks so that is a huge blessing. He recently lost his ability to talk and eat so we have a tobii and a gtube. I really like to read as many articles as i can to prepare myself for the future. Right now, even though, I'm a Registered Nurse, I'm dreading when my husband needs a tracheostomy so I'm trying to study on that. If you have any helpful ideas I'd appreciate it. Oh and what power chair model did Jeff have? We are in the process of ordering one now? Thanks for the link to the mobility van. I also need to start planning for that!!!!! Thank-you so so so much!