A Life Unfolding: The Beauty and Weight of a Slow Farewell

I am blessed to be the wife of the love of my life and the proud mom of two extraordinary boys we adopted in 2013 - now 15 and 14. Our dog, Snake, may raise eyebrows with her name, but she is the kind of loyal companion who somehow knows when to curl up beside me without being asked.

We’re a family that thrives on adventure, laughter, and faith. Even when life looks different than we expected, we choose to move forward with purpose, courage, and joy.

Living with a terminal diagnosis

I once imagined a very different future - one where transthyretin amyloid cardiomyopathy (ATTR-CM) never existed. But in March of 2020, my life shifted dramatically when I received my diagnosis. I already knew what this disease could look like; I had watched my father face it after his diagnosis in 2009. We lost him the following year.

I remember thinking then that “terminal” meant something sudden, something that happened in days. I didn’t understand that it could also be a slow, steady goodbye that stretches across seasons... years... moments. And now, I’m living that long goodbye.

Early signs of ATTR

Looking back, the early signs were there. In 2018 I began retaining fluid — so much that I gained nearly 25 pounds in a month and my stomach turned rock-hard. My doctor sent me to a lymphologist, but nothing improved. The shortness of breath, the fatigue, the sense that something was deeply wrong - it all kept building. An echocardiogram revealed thickening of the left ventricle, but ATTR-CM wasn’t even on the radar. It was my sister who gently said what I was afraid to admit out loud: “Faye, this looks like Dad.”

Fear kept me silent for years about our family history. I worried what knowing might mean. But with her encouragement, I finally ordered a genetic test.

Testing and diagnosis

That test kit sat untouched on my kitchen table for two weeks. I would walk past it, glance at it, and feel my breath catch. When I finally mailed it in, I knew my life might be different on the other side. And it was.

My doctor called with the positive result, and all I heard was the echo of my own fear: I’m going to die. She didn’t know much about the disease at the time — few did — but she began researching day and night to learn how to help me. I will forever be grateful for that determination.

Coping with uncertainty and loss of control

Receiving a terminal diagnosis forces you to make a choice about how you will live the rest of your life. For me, it meant deciding whether I would mourn the future I thought I’d have or embrace the one I’d been given... even though it came wrapped in uncertainty.

I wanted control — desperately. My instinct was to manage everything, to somehow order this disease into submission. But ATTR-CM teaches you something humbling: control is an illusion. What we do have is time — precious, fragile, unexpected time. And with that time comes opportunity.

Outlook for ATTR

I’ve learned that a terminal diagnosis doesn’t always mean the end is close. Sometimes it means you have a few years. And as strange as it sounds, there is a gift in that. I get to say goodbye slowly. I get to make intentional memories with my husband and our boys. I get to check things off my bucket list. I get to write letters and journals full of the stories, wisdom, and love I want them to hold onto long after I’m gone.

How I live my life now

I’ve learned to celebrate the ordinary days because they’re the ones that build a legacy. When I look at my husband — my steady, unwavering partner — I’m reminded that vows aren’t just spoken; they’re lived. And he lives them every single day.

My boys inspire me to keep teaching, keep loving, keep showing up. Time means something completely different to me now. It’s no longer something I simply move through — it’s something I honor.

Sharing our ATTR stories matters

Sharing my story has become a calling. For two years, I went from doctor to doctor without answers. I don’t want anyone else to walk that same confusing, frightening path. Educating others about the early signs of ATTR-CM feels like continuing the work my father began without ever realizing it.

My journey is still unfolding. Some days are hard, some days are beautiful, and most days are both. But through it all, my faith remains my anchor. I don’t know how many chapters are left in my story, but I do know this: I will fill them with gratitude, purpose, and love.

And I will make every moment count.