When I think about my love story with my husband, David, I don’t start with ALS. I start with joy.
David has always treated me like a queen. Anything I ever wanted, he found a way to make it happen. Anywhere I wanted to go, he took me. We truly enjoyed life together, laughing often, traveling when we could, and always making the most of each day.
Then one day, we noticed something wasn’t right.
David’s words suddenly became unclear, and I honestly thought he might have had a silent stroke. After seeing a neurologist, we were given a diagnosis that changed everything: ALS. Very quickly, our lives filled with new routines, new equipment, and new terms like mobility aids, an Eye Gaze device, BIPAP, and cough assist. It was overwhelming at first.
I remember feeling stunned and confused, wondering how someone so healthy could be diagnosed with ALS. I was scared, too. No one prepares you for becoming a full-time caregiver, you just learn as you go, one step at a time.
For David, the hardest part wasn’t what ALS was doing to his body. It was not being able to help others the way he always had. He’s always been the one who made sure everyone else was okay. Even as things changed, he didn’t want the disease to define him, and in many ways, it never has.
What this journey has shown me is how strong love really is.
True love means looking past what ALS has taken and still seeing the man I married. David is my prayer partner, my soulmate, and my best friend. His heart, his compassion, kindness, and love, has never changed. And that’s what I fell in love with.
These days, love shows up in the smallest, sweetest ways. David was never someone who asked for much, so when he asks me to help with even the littlest thing, it means everything to me. Those moments remind me how deeply connected we are.
When he’s in pain or feeling stiff, I’ll get a heating pad or whatever helps him feel more comfortable. Then I lay beside him, hold his hands, cuddle in his arms, and we listen to music. I tell him how much I love him, how handsome he is, and that I will always be by his side.
We were married in 2020 in Martha’s Vineyard, but COVID-19 and ALS made a big wedding impossible. Last year, we turned our five-year vow celebration into a beautiful ceremony with an 18-person bridal party at Adelphia’s Restaurant in New Jersey.
As I walked in, I sang to David, and of course, he was already crying. For the first time in three years, he stood for two full minutes as we danced to “Forever” by Jason Nelson. A mime dancer performed during our dance so everyone could focus on the joy, not his limitations. David danced with his sisters, our family and friends shared heartfelt toasts, and we ended the night with dinner and dancing. It was magical, joyful, and full of love.
Now, the moments that feel most sacred to me are often the simplest ones. Every time we make each other laugh. Every smile we share. Every morning and every night when we pray together and say, “I love you.” In those moments, I feel his heart, and that’s what matters most to me.
We’re still creating memories together, intentionally and joyfully. We keep our date nights. In our home, we have a wall that stretches from the first floor to the second with a sign that reads “Through the Years,” filled with photos from special moments we’ve shared. We decorate our dining room for holidays, milestones, and celebrations, because every moment is worth honoring.
This journey has taught me something beautiful about love.
Our hearts don’t know ALS, our minds do. So, we choose to love with our hearts and let our minds follow. Every day that David is here, I love him even more than the day before. Love truly does outweigh any obstacle.
If our story could leave a message for others, it would be this: say “I love you” often. Communicate openly. Find something good in every day. Remind your loved ones how much they matter. Make each other laugh. There will be good days and hard days, but end each day knowing you did your best. And always remember, it’s okay not to be okay.
When I think about how our relationship will be remembered, I smile. David and I never let ALS steal our joy, or our love for each other.
And if there’s one thing I want to say to David, straight from my heart, it’s this:
“David, I promise to hold your hand through every moment, be your sunshine on cloudy days, and your rainbow at the end of any ALS storm.”
This is our love story. And it’s one that will never let go.
