The air this week is cold, and every small bluster of wind sends the few leaves still clinging to their branches cascading to the ground. Two days ago the kids and I walked to school through the field behind our house over a blanket of snow covering the still-green grass, and now when I wake up in the morning the sky is still dark.
Winter is coming, and I should be grateful. Every change of seasons that the four of us walk through together is a gift, and I’m always aware of that. But the looming cold doesn’t feel inviting. It feels lonely and scary, empty and endless.
Chris’ busiest time of year at work is the month before the NHL draft and free agency. This year that came in September, which was strange, but isn’t everything about this world and our life strange now?
Last week, while he worked late one night, the kids and I sat at the table eating dinner when Willa said, “Cohen, in 100 years we’ll be grandparents!” I informed her that in 100 years, they would likely be dead. She gasped. I explained it’s rare for people to live to 109 and 106 years old, and when Cohen said, “Mommy, in 100 years you’ll be …,” I interrupted to say, “In 100 years I’ll most definitely be dead.”
The only thing we know for sure about life, I told them, is that we all die.
He frowned, looked up at me with sad eyes and said, “I wish I had the resurrection stone.”
The resurrection stone is something from Harry Potter, a stone that can bring people back from the dead. But it’s imperfect. The people return to the living world sort of transparent and distant and sad. They are not who they once were.
I reminded Cohen of that. He looked at me and said, “Yeah, but at least you’d be there. That would be enough.”
My heart cracked open. I squeezed his hand and told him we have so much more time together.
After bedtime I thought about what he’d said, what he didn’t realize he was telling me.
Chris has lost his right hand. He’s lost his smile and, to our great heartbreak, he is now losing his ability to swallow.
We don’t know how much he will lose in the future. He could be in a wheelchair, unable to talk, unable to play catch and ride bikes and squeeze us tight, unable to breathe with his own lungs. He could be different from who he once was, but for Cohen — for us — that would be enough.
A week later we all sat at dinner together when Chris started coughing and gasping for breath. He had taken too big of a bite and his food went down the wrong way, as we all say. What that really means is he choked. He stood up from the table and quickly made his way to the washroom. Cohen and Willa started sobbing, their eyes filled with fear.
Chris caught his breath and returned to the table, hugged the kids and wiped their eyes, and then it was time for another conversation with our babies about this disease.
We explained and we reassured. Daddy is ok, but just like his hand muscles got weak, the muscles he uses to swallow are getting weak. He has to take small bites, he has to eat slowly and not talk while doing so. He has to make sure he keeps eating lots so he stays strong and doesn’t lose weight. And he can still play catch with you and tickle you and hold your hand.
The medicine is still working but maybe it’s just not getting to the parts of his brain that control his swallowing. Someday, Daddy might not be able to eat much with his mouth. If that happens, he will have a tube in his belly, and we will put his food right into his tummy from there.
If that happens, that’s OK. Daddy will still be here. He didn’t need his right hand to be here and be our Daddy, and he doesn’t need to be able to eat with his mouth to be here and be our Daddy. And so our jobs are to remind Daddy to be safe, to tell him we love him, to ask any questions we have and talk about how we are feeling and to tell him to eat more ice cream!
They giggled and they exhaled. We asked if they had any questions, anything they wanted to say. Cohen shook his head no. Willa said only, “I’ve never seen that happen to Daddy before. I was scared.” We told her yes, it was scary, but Daddy was OK.
They saw in our eyes that we meant everything we said, that we were honest with them and that we seemed OK, and so long as they believe we are OK, they are OK.
They cleared their plates and went to brush their teeth. I looked across the table at Chris, searching his blue eyes. They looked back at me full of sadness.
“I’m sorry,” he said. I told him I am, too.
I put Willa to sleep and waited until I felt her little body relax and heard her breathing slow before the tears started rolling silently down my cheeks.
Tomorrow would be another day, and it might be better than this one, but it wouldn’t be a day without ALS.
We don’t get those.
We are out here now, floating in this endlessly stormy sea. For so many months, when Chris had no progression, we stood on the shoreline and watched so many others in the ALS community bobbing along and fighting the wind and the rain and the swells. We saw them keep pressing on, with no rest in sight, no place to drop anchor and catch their breath. It looked so hard and so tiring and so consuming. Maybe we could stay on the shore, we thought. Maybe this drug would keep us on safe, solid land. Maybe we’d be spared.
We were not, and now we are out there with them.
And while we stood on the shores, we saw something else happen. We saw all those out on the water looking to the shore at Chris and cheering for him to stay there. We saw our hope become theirs. Chris has become a symbol of what could be, of what might be on the horizon for all those who’ve been forced into the murky waters of ALS. In Chris, they hoped, maybe there could be a way back to dry land, a calming of the endless storm they’d been sucked into.
And so Chris’ progression isn’t hard for only him. He feels he’s letting down an entire community, one just as desperate for his story to have a happy ending as we are.
What we know, with absolute certainty, is that this drug is working for Chris. His mutation (SOD1 A4V for those in the ALS community who will wonder) comes with a 6-18 month life expectancy. His dad and two uncles all died within nine months of diagnosis. His 28-year-old cousin within 18 months. And here Chris is — walking and running and skating and breathing and talking — 18 months from symptom onset.
He is a miracle. This drug is a miracle.
We also know that, for us at least, it has not stopped the disease entirely.
Now, along with thousands of other families dealing with this disease, our boat is taking on water. Faster and faster, it rises around our feet. But we sit, tall and strong and steadfast, hoping for help that will patch our leaky vessel. We don’t expect perfection. We are OK with soggy shoes and torn sails.
We just want to stay afloat.