When Ryan was diagnosed with ALS in 2021, he and his fiancée Katie were five months away from their wedding day. What was meant to be the start of their next chapter together instead became the beginning of a journey they never expected.

“The irony of the timing felt like the cruelest part,” Katie shared. “We had both been through so much to get where we were, and we thought our easiest and funnest chapters were ahead of us.”

Despite the shock and heartbreak that followed, Katie and Ryan chose to move forward with joy and deep love for one another. They celebrated their wedding, built a home together, and this year, welcomed their first child, a baby boy.

Ryan’s ALS has progressed slowly, something Katie calls a blessing.

“We’re incredibly grateful that Ryan is an outlier with an extremely slow-progressing form of ALS, so four years later, we’re still sharing an incredible life together,” she said.

Katie, a nurse by profession, has always found comfort in caring for others. When it comes to ALS, caregiving takes on an entirely new meaning, one that is both anticipatory and enduring.

“Caregiving comes naturally to me,” she explained. “What bothers me most about ALS is the helplessness of knowing that no matter how good I am at my job as a caregiver, there is very little I can do to change outcomes or make his life easier.”

This feeling of loving deeply while carrying the knowledge of future loss is something many ALS families quietly live with. It’s called anticipatory grief, the process of grieving in advance for changes that have not yet happened. For Katie, it’s not a single moment of sadness, but a constant awareness threaded through daily life.

“There isn’t a moment of any day that ALS isn’t intertwined with all of my thoughts and emotions, like credits rolling in the background,” she said. “Even when things are going great, the weight of it never goes away.”

In the face of uncertainty, Katie has found that gratitude takes on a new shape. It’s no longer reserved for the big milestones or perfect days; it’s found in simple moments.

“Gratitude is every single little thing that you would’ve never known to be grateful for before,” she said. “Having my husband help decorate the Christmas tree, watching him carry our child, going on family walks, these are all things I know could’ve already been taken from us, and one day will be. There are dozens of opportunities to be grateful every day.”

For many ALS families, this shift in perspective becomes a quiet act of resilience, an intentional choice to live fully in the present while holding space for the unknown.

As Katie and Ryan continue to navigate life with ALS, their story reflects both the fragility and strength of love under pressure.

“The loss of dreaming about your future is huge in itself,” Katie said. “It’s a huge adjustment to adapt to that permanently being my life now. It’s constantly draining mental and emotional energy, regardless of what else is happening.”

Yet, through it all, Katie continues to show up for her family. Her story is not only one of caregiving but of what it means to love bravely in the face of uncertainty.

At Live Like Lou, we are honored to share stories like Katie and Ryan’s. Their story reminds us that even in the shadow of ALS, love continues to grow and gratitude deepens.