One phrase I’ve found myself repeating—again and again—is: “How is this my life?” And I know I’m not alone. I’ve heard it from so many other caregivers and survivors too. It’s a question that can come from the deepest moments of pain, and surprisingly, from the most beautiful ones as well.

I remember saying those words months before Tom passed. It was one of the lowest points in our journey with ALS. I was overwhelmed by sadness, grief, exhaustion, and a deep despair that felt unshakable. I wasn’t just watching my husband slowly slip away—I was being pulled under by the emotional weight of it all, made heavier by the later realization that we were also dealing with FTD.

Back then, I carried shame and embarrassment for even thinking those words. I’ve since processed those feelings. That moment was real. That pain was real. And yes, that was my life.

When Tom passed, the question returned: “How is this my life?” How did we go from a marriage full of laughter to me sitting alone in a quiet house, trying to comprehend a world without him? I remember hiding in bed, pleading with God to take the pain away. I wrote posts wondering if I’d ever feel joy again. I waited for it, hoped for it—but in the quiet moments, the heartbreak was louder than anything else. And still, it was my life.

But here’s what I’ve come to realize: that question—“How is this my life?”—isn’t just for the painful moments. It shows up in the joyful ones, too.

I said it on a Mediterranean cruise with Cy, as we watched breathtaking sunsets and explored new cities. I said it while swimming with sharks in Belize and watching monkeys play outside our rental in Costa Rica. I said it on a freezing day in New York City, standing at the top of the Empire State Building with Grant, facing my fear of heights and feeling nothing but awe.

Just this morning, I sat in the hot tub in my backyard, wrapped in quiet and reflection. Nearly three years have passed since Tom’s death. I’ve worked through layers of grief and guilt that ALS left behind. And I asked myself again: “How is this my life?” Not in disbelief anymore—but in wonder.

I’ve learned that to find happiness again, I had to meet it halfway. That meant letting go. Letting go of what I imagined growing old with Tom would look like. Letting go of the anger that he died. Letting go of the fear of being a widow. Letting go of my old life, so I could see the beauty in the life I have now.

I’m still healing, still learning, still growing. But I say yes to more adventures now. I embrace discomfort. I have no time for anything that isn’t authentic. And while I can see how far I’ve come, I know the journey isn’t over.

This is my life. I wouldn’t trade it—not even the heartbreak. Because that pain means I loved deeply. And to love that deeply is a gift.

How is this my life? It just is. And for all of it—the joy, the sorrow, the healing—I am grateful.

All my love,

Lara

For such a tiny word, “if” can bring on monumental feelings. I know this all too well. “If” was actually a motivator of mine for doing everything, being everything, knowing everything, and fighting for everything I could, with what I could, for Tom.

“If” can bring on such guilt and regret. It can keep us in a space that is not healthy. When I lost the twins and then our son in the second trimester, I was consumed by the “what if’s”. What if I would have known more about a twin pregnancy and the signs of preterm labor, “what if’ I could have been a better advocate for them. “What if” I understood that Doctors are not all knowing and fell back on what is typical/normal or how their own experience could bias them in the care of patients. “What if” I trusted my gut more. I spent 10 years doing this until I got help and processed their losses. In my grief journey with the babies, I learned that sometimes terrible things happen. I learned that I did the best I could with the information I had.

When Tom was diagnosed, I used the experience of losing the babies to adjust how I went into his diagnosis. I vowed from the very beginning, that I would do whatever I could so that in the end, I would not “what if” myself for the rest of my life. Let’s be honest, do you think my OB was kept up at night for 10 years doing the “what if”?

I learned what I could. I spoke up when something didn’t seem right. I listened to that inner voice, which I would later refer to as my spidey sense, when it would tingle. I did not just accept the answers or suggestions of the medical community without doing my own research or asking lots of questions. I honestly didn’t care how I came off to them or anyone else because in the end, it would be me who would deal with the aftermath of ALS, not them. When I heard I was being “too much” I knew I was on the right track.

I took this approach for everything. When ALS made getting out harder for us, I got creative and brought the world to us. Others helped in that as well. We had two amazing concerts in our home thanks to a non-profit in my area called Swan Songs. I arranged a petting zoo to come in for the afternoon. We celebrated ever big and small holiday by decorating the master bedroom where Tom lived. I put a window bird feeder on the glass french doors so Tom could watch the birds in the backyard, and at one point a very determined squirrel that learned to use the nearby birdbath to launch himself into the birdfeeder. We even hosted a 70’s themed party in the backyard with drag queens that Tom and I actually missed thanks to a trip to the ER when Tom developed kidney stones, but the party continued.

I didn’t want this side of ALS to be filled with the “what ifs”. I applied the lessons I learned with the babies to Tom and ALS. I became the person I needed to be for him and our family. Do I struggle with “what if’s”, yes, there are some but not the ones that will keep me stuck in grief. I can say, I loved and gave Tom everything I could. I saved nothing for myself during the ALS years because it was all for him so I could emerge without the guilt or regret that can come with the “what if’s”. I paid the price for that and have spent the 2 1/2 years since his passing working on myself. There is so much more work to be done but I am living this life, like I did with Tom during the ALS years, in a way that when things are all done for me and I change my address as my Grandma used to say, I will have no “if’s”. I will have lived this second part of my life to the fullest. There will be no wondering about it.

All my love,

Lara

Before Tom died, I cleaned out many of his clothes and had quilts made. Five to be exact. For Trey, I had one made from Tom’s military uniforms. For his parents and sister, quilts made from Tom’s dress shirts, ties and military uniforms. For me, shirts, ties, military uniform and the dress I wore on our first date in July 1989. I never could explain why I hauled that floral summer dress around all these years, but I found a home for it in the quilt. So when Tom passed, I had already cleaned out many of his things, but not everything. There are still some clothes left in my closet, his baseball hat hangs in my closet as well. His wallet, phone, and glasses live in my night stand and his razor still sits by the sink. I finally unplugged the razor almost a year ago, but could not bring myself to remove it. As I was getting ready and cleaning up my counter this morning, I kept looking at the razor.

Something so silly, like an eclectic razor, can bring on a flood of memories. When Trey was just a baby, and Tom would get ready for work, Tom would hold the buzzing razor in his hand and touch Trey’s little chubby cheeks with it. Trey would laugh and laugh at his silly Daddy. You know the kind of baby laugh I am talking about, full-on belly laugh!

There were times when Tom would get up and get ready for work and I would grab our coffee, and we would chat as we would get ready for work. As I sipped my coffee and put on makeup, he would sip his as he shaved. So many times, I would stop and just watch him shave. I can see it even now, how he would hold his chin or mouth as he shaved, careful not to go too fast to cut himself. He would inevitably stop and start back and ask me with those beautiful green eyes and say, ‘What”? My response was always like a swooning teenager, “Nothing, I just love you.”

Then ALS came into our lives. When Tom found it hard to turn the razor on and grab it, I would do that for him. I would place the razor between his hands and he would use both hands to shave. I started helping him shave when even holding the razor became too hard. When he became fully paralyzed, shaving him became part of my morning or evening routine. Shaving him allowed me to get close to him and whisper my “I love you’s”. It allowed us to be intimate in a different way.

The idea of the razor holds many memories for me, and yes, it is just another item that has been left behind. When do you remove these reminders of the person you loved and lost? The answer I give is the answer that is right for me, which is when your heart doesn’t ache at the thought of seeing the item gone. This morning, as I was straightening up the counter, I wiped off the razor and moved it to my bed. I will place it in a box with some of Tom’s other things that I haven’t had the strength to get rid of permanently but need to see if my heart can live without.

That’s how this widow’s life works. It seems like you are constantly testing the waters of what you can part with and what you can’t. I wonder what it will look like next year and what remaining things I will be able to part with. I have a spare bedroom stuffed with his medical stuff that needs a good culling out. The problem is, my heart just can’t do that yet, so maybe that will be next year’s goal!

All my love,

Lara