Today you are 40 years old. Two years ago I didn’t know if we’d make it to this day. If we did, I thought with certainty, life would look so different for us, full of wheelchairs and breathing machines and all sorts of medical devices keeping you alive. But here you are today, at your favorite place in the world, driving the boat and diving off the dock, throwing footballs to the kids in the water and playing wiffle ball in the yard. You are drinking vodka sodas and eating lobster drenched in butter and having a frappe a day.
You are not dying, and lately I’ve been thinking more and more that maybe you really won’t, not from ALS anyway.
When you were first diagnosed I dragged myself through life watching other people, observing their lives, wondering what it would feel like to be them, to have every reason to believe the future was still mine to have. For me and for us, I thought, those days were over. You sometimes still mention, like you did before ALS, that one day we will own a lake house or that when we are empty-nesters we will spend a year living in San Diego, and I smile on the outside despite inside feeling like I am on a roller coaster and we have been click-click-clicking to the top and suddenly you mention the future and the world falls away from me, my body dropping, my heart and stomach slamming into my throat.
But in these last months, as you sailed past the 6-18 month life expectancy doctors gave you 26 months ago, as I watched you coach baseball and prepare for the NHL Draft and Free Agency, as I listened to you talk to agents and negotiate contracts and as I sat next to you on the porch and watched the sun sink into the Western Canadian sky, a small thought started creeping into my prepare-for-the-worst mind.
What if someday we do get that lake house and we watch the sun set behind the green New Hampshire mountains and we pull the kids behind the boat on a tube while they scream with glee? What if, together, we do get to watch Cohen and Willa grow up and you are there for all of the moments, big and small? What if we keep celebrating birthdays and watching the wrinkles deepen on each other’s faces and the grey hair creep in around our temples? What if you survive a not-survivable illness?
What if the future is ours to have after all?
So much of your life has not been fair. You’ve lost your mom and your dad, your dominant hand, your brilliant smile, your expressive face and your ability to eat, drink and speak the way you used to. You have not lost your spirit, your resolve or your optimism. Only a couple of days ago, as we drove through the winding New England roads, the sun flitting through the trees, the windows down and the wind whipping through our hair, you looked at me and said, “This is hard, but if I can do some good, I think it’s all worth it.”
You spend very little time missing the parts of your physical self that this disease has taken. You throw left-handed; you enjoy taking us out for the foods you love but can no longer eat; you just keep going. Sometimes, not often, you let yourself miss your smile. The other day you told me that your inability to make facial expressions means you always look distant, but the truth is that Cohen, Willa and I have never felt closer to you.
In spite of everything you deal with each day — or maybe because of it — you have found it in you to love us better than you ever have before.
It’s true that I’ll never think about the future with the same cavalier assumptions I used to, I know that, but I also know that when I think about my life with you, the future seems possible again.
This is not a small thing. This is not pie-in-the-sky hope. This is not wild optimism. This isn’t even my deep, abiding belief that no matter the obstacle in life, you find a way to overcome it. This is the result of the science that I watch working in you every single day. This is about a drug that is changing the course of this disease and of our family. This is about being one of the first people to survive ALS. This is about a miracle. The medicine is a miracle, of course, but so are you.
You are the miracle.
You are our miracle.
Happy 40th birthday, baby.
2 responses to “#24: 40”
Dear Kelsie, I’m sorry for your husbands diagnose but do warm when I read about your familys love. I have just found your blog and have also a husband with ALS. Your text is so hopeful. Can I ask you what medicine Chis is on? Thank you for sharing!
Hi Johanna – Chris is in Biogen’s trial for the drug Tofersen, which is an ASO made for people who have ALS caused by an SOD1 mutation. Sending love to you. Xx