Cherishing The Time We Have (December 13, 2024)

Today has been one of the hardest and most emotional days of my life. Each moment feels like a wave crashing over me...

Up until today, we’ve been blessed to have a hospice nurse visit twice a week, with the comfort of a 24/7 on-call option. That routine has been a lifeline in so many ways, but earlier this morning, Aveanna Hospice reached out to let me know that Ali’s continued decline in health now warrants daily visits. Starting today, a nurse will be here every single day to help care for her. Hearing those words felt like another step into a reality I’ve been desperately trying to avoid.

Ali’s body is struggling more than ever. Her blood pressure and respiratory rate are low, and mottling has begun to appear on her legs and other parts of her body. For those who aren’t familiar, mottling happens when the heart can no longer pump blood effectively. It’s one of those signs that nobody ever wants to face, but here it is, staring us in the face.

Despite the heaviness of the day, there were these moments of beauty and light. Our incredible friend Kim Bettis came by tonight and brought Martin’s BBQ for dinner. More than that, she poured so much love into Avalynn and Liam. Watching them play and laugh like they didn’t have a care in the world was a gift… one of those moments you want to freeze in time. For those few hours, the weight of everything else lifted, even just a little.

Kim also spent time by Ali’s bedside, just talking to her. Ali hasn’t been awake much lately, she sleeps most of the day, but I could see that she recognized Kim’s voice. A small smile appeared on her face when Kim started speaking.

Later, Aaron and Ann Thanasack stopped by to sit with Ali. They’ve been family friends for as long as I can remember, and when Ali heard their voices, that same little smile appeared. Even though her energy is fleeting, even though her words are whispered and rare, Ali is still here with us in the ways that matter. She hears us. She feels our love. And that, at least, is something.

I won’t lie… as Ali’s health continues to decline, it feels like the walls are closing in. Each day, I feel more overwhelmed, more exhausted, more broken. I still pray for a miracle every single day, but I’m also trying to prepare myself for what might come next. Preparing, of course, is a relative term. How do you prepare yourself to lose the love of your life? You don’t. You just survive it.

A coworker and friend sent me a quote that I haven’t been able to stop thinking about. It says, “If love could save you, you would live forever". Those words hit me like a freight train every time I read them. They capture everything I’ve been feeling… this desperate, aching love that would do anything to pull Ali back from this terrible illness. If love alone could save her, she’d have beaten this a thousand times over.

But love isn’t enough to change the course of this disease. What it can do is hold us all together as we walk through this. It’s the love of our family and friends, who keep showing up and holding us when we can’t hold ourselves. It’s the love of Avalynn and Liam, who still find joy in the middle of all this sadness. And it’s the love Ali and I have shared for so many years, which will carry me through whatever happens next.

I’m heartbroken, I’m overwhelmed, and I’m scared. But I’m holding onto hope… even if it’s by the thinnest thread. I still believe in miracles, and if one is out there waiting for us, I will be ready. Ali deserves that. She deserves forever.