I don’t want to miss a thing. Yes, as I typed that, I sang the Aerosmith song in my head. It’s the soundtrack to my husband Jason’s favorite movie, “Armageddon.” But more than that, as a special needs parent and caregiver, I find that the lyric plays…
Columns
Life is lived in seasons, at least here in Nebraska, where we experience all four of them. Some days offer nearly perfect weather: The sun is shining, the temperature is in the mid-70s, and I can smell the thaw of winter and feel the hope of spring. Then there…
I’m reading “Eyes to the Wind: A Memoir of Love and Death, Hope and Resistance” by Ady Barkan, a late lawyer and political activist who had ALS. It’s been a tough read so far. In the book, Barkan recounts his experiences after being diagnosed with ALS…
I am a competitive former college athlete married to a someone who is equally competitive and also was a college athlete. We like to win and try to position ourselves in ways to make it possible. However, when three of our sons, Max, 18, Rowen, 15, and Charlie, 13, were…
On Feb. 19, I went to see my psychiatrist for the first time in 2024, after enduring a rocky start to the new year. When I last saw him in November, we’d decided that I’d consult him again as needed, but I wouldn’t have fixed appointments. The year started for…
When three of my sons were diagnosed with Duchenne muscular dystrophy more than 10 years ago, I shared everything we experienced on social media and found support and understanding. But as they grow older, weaker, and more dependent on me, I find caregiving harder than I could’ve imagined. I…
Last night, my wife, Wendy, asked me if I’d like to go out to eat. For most people, this request wouldn’t require much thought. It’s a simple yes or no question. However, my facioscapulohumeral muscular dystrophy (FSHD) makes even simple decisions like this one much more complicated. FSHD is…
Pulling into a parking spot at my oldest son’s high school, I hit a parked car with my van. Thankfully, there was no damage to either vehicle, and the car’s owner, sitting in the front seat when I hit it, was amiable and understanding. I could safely unload my son…
Amid a topsy-turvy start to 2024, I’ve marked a date on my calendar I’ve been looking forward to more than any other: Valentine’s Day. While it might not be a particularly significant day for many others, it’s a big deal for me. It’ll be my first time celebrating the day…
I do too much. You might assume I’m talking about caregiving because you’re reading a column written by a caregiver. And in part, you’re right. But mostly, it’s an admission that I’ve been doing things for my three sons with Duchenne muscular dystrophy (DMD) that they can…
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