PART 1: THE LIFE WE BUILT TOGETHER
When I married my husband in 2014, I felt like life was giving me a second chance.
It was the second marriage for both of us. We each came into the relationship with a daughter from our previous marriages, and while blending families wasn’t always easy, we shared a vision of building something strong together. We weren’t young newlyweds starting from scratch. We were two people who had already experienced life’s disappointments and were determined to create something lasting.
We understood each other in a way that only people with a little history behind them can.
The day we got married, I felt hopeful about the future. We talked about all the things couples talk about—the places we’d travel, the memories we’d make, the years ahead. We knew life wouldn’t be perfect, but we believed we would face whatever came our way together.
A year later, our son was born.
The moment I saw my husband holding him for the first time is a memory I will carry with me forever. His face lit up with pride and joy. Watching him become a father again was one of the greatest gifts of my life.
Those early years were busy and beautiful.
There were school events, family dinners, birthday parties, vacations, soccer games, and countless ordinary moments that now feel extraordinary. We were raising three children together and creating a home filled with laughter, noise, and love.
Life wasn’t perfect.
No marriage is.
But we were happy.
Looking back now, those years feel like a treasure chest of memories that I didn’t fully appreciate while I was living them. At the time, I assumed we had decades ahead of us.
I assumed our story would be long.
I never imagined that everything could change so quickly.
About five years into our marriage, we received news that would alter the course of our lives forever.
My husband was diagnosed with FTD/ALS.
Most people have never heard of that combination.
Frontotemporal Dementia and ALS.
A rare and devastating disease.
The diagnosis felt impossible to understand.
We sat in doctors’ offices listening to explanations, medical terms, statistics, and treatment options. I remember hearing the words, but my mind struggled to process them.
How could this be happening?
How could someone so full of life suddenly be facing a disease that would slowly take everything away?
At first, we tried to focus on hope.
We told ourselves that maybe the doctors were wrong.
Maybe the disease would progress slowly.
Maybe we’d have more time than expected.
But over time, reality became impossible to ignore.
The disease began changing him.
Not all at once.
Little by little.
The man I knew started slipping away.
Some changes were subtle.
Others were heartbreaking.
Our children noticed things too, though we tried our best to protect them.
There is no guidebook for explaining a terminal illness to a child.
No perfect words.
No way to make it less painful.
As the years passed, caregiving became a central part of my life.
Doctor appointments.
Medications.
Therapies.
Hospitals.
Endless paperwork.
Sleepless nights.
I learned more about medical equipment and insurance than I ever wanted to know.
But mostly, I learned how strong love can be.
Because when someone you love is suffering, you keep going.
Even when you’re exhausted.
Even when you’re scared.
Even when your heart is breaking.
You keep showing up.
Day after day.
Year after year.
And somehow, our family kept moving forward.
Birthdays came and went.
School years started and ended.
The children grew taller.
Life continued happening around us.
But the disease never stopped moving forward.
Eventually, it became clear that we were entering the final chapter.
The word “hospice” entered our lives.
And suddenly the future we had imagined was replaced by a much smaller timeline.
Days.
Weeks.
Maybe months.
The realization was overwhelming.
The man I had planned to grow old with was dying.
And there was nothing I could do to stop it.
END OF PART 1
PART 2: THE HARDEST GOODBYE
Today is June 22, 2025.
My husband is on hospice care.
Someone stays with him around the clock because it appears that he is preparing to transition.
Even writing those words feels surreal.
For years, we’ve known this day would eventually come.
The doctors told us.
The specialists told us.
The disease told us.
And yet no amount of preparation can truly prepare you.
No amount of knowledge softens the reality of watching the person you love reach the end of life.
People often think grief begins after death.
I’ve learned that isn’t true.
Grief begins long before.
I’ve been grieving for years.
I’ve grieved each ability the disease took away.
Each memory it stole.
Each future plan it erased.
I’ve grieved the husband I used to know while still loving the man sitting in front of me.
Now another layer of grief is arriving.
The grief of knowing that our time together is almost over.
I am about to become a widow.
Even typing that word feels impossible.
Widow.
It sounds like someone else.
Someone older.
Someone whose story belongs in a book.
Not me.
Not us.
And yet here I am.
Sitting beside the man I married eleven years ago.
Watching the clock.
Listening to his breathing.
Wondering how many moments we have left.
Friends and family ask how I’m doing.
I never know how to answer.
How do you explain a heartbreak that is still happening?
How do you describe the feeling of losing someone while they’re still here?
Some days I feel strong.
Other days I feel completely shattered.
Sometimes I cry.
Sometimes I don’t.
Sometimes I sit quietly and simply hold his hand.
One of the things that breaks my heart the most is our son.
Next month, he turns ten years old.
Ten.
Such a big milestone.
Double digits.
A birthday every child looks forward to.
And the painful reality is that his father may not be here to see it.
We are only weeks away.
A matter of days.
And yet it feels like an impossible distance.
I find myself thinking about it constantly.
If only he could make it to that birthday.
If only we could have a little more time.
If only this disease had been slower.
If only life were fair.
But life doesn’t always give us what we want.
And terminal illness certainly doesn’t.
I look at my son and wonder what he will remember.
Will he remember fishing trips?
Birthday cakes?
Family vacations?
The sound of his father’s laugh?
The way his dad looked at him with pride?
I hope so.
More than anything, I hope so.
Because although this disease has taken so much, it cannot erase the years they already shared.
Nearly ten years of love.
Nearly ten years of memories.
Nearly ten years of a father loving his son.
No disease can take that away.
As I sit beside my husband now, I think about our wedding day.
The promises we made.
The future we imagined.
The ordinary moments we once took for granted.
I never imagined our journey would look like this.
But I also never imagined how much strength love could create.
Love carried us through every appointment.
Every setback.
Every difficult conversation.
Every impossible day.
And now love is carrying us through goodbye.
I don’t know exactly what the coming days will bring.
I only know that when the moment comes, a part of my heart will go with him.
But another part of him will remain.
In our son.
In our daughters.
In every story we tell.
In every memory we share.
In every life he touched.
And while I am not ready to say goodbye, I am grateful for the years we had.
Grateful for the family we built.
Grateful for every ordinary moment that became extraordinary simply because we shared it together.
The future looks frightening right now.
The road ahead feels impossible.
But for today, I am here.
Holding his hand.
Loving him.
And cherishing every moment we have left.
THE END
