“You know what’s really wonderful about those fireflies?” he said finally, as if they had been having a whole other conversation. “Sure they live for just a few weeks. Not much at all in the grand scheme of things. But while they’re there, the beauty of them, well, it takes your breath away.” He ran a thumb over the ridge of her knuckles. “You get to see the world in a whole new way. And then you have that beautiful picture burned onto the inside of your head. To carry it wherever you go. And never forget it.”
Before he even said the next words Alice felt the tear begin to slide down her cheek.
“I worked it out sitting here. Maybe that’s the thing we need to understand, Alice. That some things are a gift, even if you don’t get to keep them.”
My Mom gave me The Giver of Stars for Christmas, and it helped me to read a beautiful story over the holidays and think of Matt.
Matt did not want to live his cancer journey publicly. I shared a little bit here, but then I stopped.
I don’t want to open that up very much today.
But I want to share some of what happened and say that he is special and strong in ways that I could never imagine.
We had two clear scans following his uveal melanoma treatment. Then, sitting in a hospital room with our three-month old daughter, we found out that the melanoma had metastasized to his liver.
We went through immunotherapy, liver-directed therapy, chemotherapy and all of their side effects. We were evaluated for clinical trials. We spent weeks and days in hospitals and away from our baby, our dog and our farm.
We found hope in butterflies and birds and animals that we saw around the farm and songs that we heard on the radio.
We tried for normalcy by going to work, mowing the grass, shopping for groceries, walking the dog and playing with the baby. We ate vegetarian. Then we ate keto. Searching for something that helped.
We laughed and cried and were scared all the time.
The Magnolia Journal that I mentioned last post connected with me in a lot of ways. There were two stories of people who had died from cancer.
Reading Dennis Fullman’s words felt like all of the situations Matt and I faced and all of the things we said to each other. Making jokes about needing your spouse to get well because he’s the one who takes care of a specific chore around the house and goodness knows you don’t want to have to do it. Living your days with tunnel vision and making the choice to be intentional every day.
“We’ve chosen not to look too far ahead, not to get too overjoyed or stuck in sorry. We stay focused on the present day. We steady ourselves in the middle, committed to each other, living this life as well as we can, resolute in our desire to finish well, no matter how many days I have left on this earth.”
As time went on, the tumors grew, the treatments took their toll, and Matt suffered more and more. When I finally relented–fearful that any hospital visit would mean he would never come home–and took him to the urgent care clinic, I asked for a sleeping pill and some cough medicine. They put us in an ambulance and transferred us to the cancer hospital.
The tumors in his liver were so large that they had collapsed his lung.
We worked for a week to convince the doctors to let him come home. During that week there is nothing that Matt and I did not say to each other. And still, there is nothing we had to say to each other.
We know everything. We have absolutely no doubts about the love we have.
Matt came home on Friday afternoon. Our families were here and everyone got to sit with him. Ellie ran back and forth down the hall to see “Daddy!”
In the middle of the night, Matt asked to be moved to the living room. The nurse and I walked him down the hall. He managed to make it to the couch, right in the middle of the living room, surrounded by windows looking out on the farm. There, on Saturday morning, as Ellie and I played on the floor beside him, he died.
Gabe Grunwald, also in Magnolia, mirrored Matt in so many ways. Young. Determined. Rare cancer. Metastatic liver failure. Fighting so, so hard. And then knowing it is the end. I know what her last days look like. I know what it means to bring the person you love home to die.
“While there is glory in the resolve to never give up, there is also glory to be found in the grace to surrender. To know when you have run the race well and fought the good fight. The grace and grit she demonstrated in her final days lives on as her parting gift–showing us all that amid even the heaviest of life’s tasks and the most uncertain of circumstances, there is never a situation so dark that light cannot shine through, never a scenario so bleak that hope has no place.”
Matt’s last moments were in the place he loves most, with the people he loves most. Ellie was laughing. The greatest gift he gave us was time. He hung on as long as he could and made it home. The gift we could give him was letting him go that November morning. We hold him with us in many ways and know that he will always be with us.
So beautifully written Julia.
My dear Julia,
May God continue to look down upon you and your wee daughter.
You may very well be asking “God, what about what God?” I too have asked that myself with my own diagnosis of cancer and my daughter now being diagnosed with a 2nd brain tumour. We talk about “fairness in life” etc in our home, yet the conclusion to such conversation remains constant, that being it’s “life”. And with that said, life holds no guarantees. God continues to be in our lives, but more so does Faith. Faith in each other, faith that for this day, this moment all will be as it is.
Julia, thank-you for your posts. I enjoy reading about your journey and genuinely care about what will become of the path your and your Matt had begun and now because of life, (and his death) you must embark upon your own.
I wish you well, I wish you peace and strength.
Thank you very much for your kind comment. I like your thoughts about faith. I didn’t think about it in those terms, but that’s very similar to how I approach life. I wish you peace and strength and faith as well in your own journey.
I am deeply touched. Thank you for sharing.
I’m glad that my feelings came through.
Yes, thank you for sharing, Julia.
Thank you very reading and commenting.
Julia, your writing is beautiful. I felt a small little glimpse of what you must have felt. You are so very strong, I know you and Ellie will do great things with Matt’s encouragement in your heart! ❤️
Thanks for phrasing it like that, Sarah. He was encouraging us all along and we still feel him doing that.
Beautifully written. I’m so sorry you and Matt had to go through this battle. Ellie is so fortunate to have had two of the bravest people as her parents.
Thank you for all of the love and support you’ve given us.
Thinking of you. I’m so glad that Matt got to come home to the farm.
Thanks for your condolences and all of your support.
“The greatest gift he gave us was time. He hung on as long as he could and made it home. The gift we could give him was letting him go that November morning.” That is love.
Thank you for writing this and for sharing the wonderful photos of Matt. My sincere condolences to you and all Matt’s dear ones.
There is so, so much love, as I think you can tell. Thank you for your message.