#8: When You Aren’t With Me

This last month has been a lot. A lot of traveling, organizing care for the kids, asking for help (which doesn’t seem to get easier). A lot of emotional energy.

In four weeks we’ve flown to and from Toronto three times.

I am beyond grateful. I’m also tired.

On top of the increased trips to Toronto, Chris didn’t come home with me after our last one. He flew from Toronto to Boston because management goes wherever the team is over the NHL Trade Deadline.

He got to see his sister and niece and nephew, his godmother and her husband and his friends from growing up. He felt loved and welcomed in his home city. It was good for him.

It was not so good for the kids and me. Chris and I have always spent decent chunks of time away from each other during our relationship. I used to be on the road for work covering baseball and he has always travelled to varying degrees since working in hockey.

But I am no good at being apart from him anymore.

Resting in the hospital after Chris’ eleventh dose in the trial.

The first few days he was in Boston were rough on all three of us, but the last night before Chris got home was better. We knew when we woke up the next morning Chris would be there and as a result it felt like everyone was breathing a bit easier.

I cooked dinner. Willa took a bath, Cohen sat at the counter and talked to me, then helped me stir. We sat at the table together and ate. We each listed the best and worst parts of our days, like we do every night. I cut up some fruit and we sat in Cohen’s bed and read a chapter from Harry Potter. They brushed their teeth, I tucked them in and kissed them and told them I loved them.

It was all so normal. They were happy. Their life feels just the same as it always has. They know that their dad has ALS. They know their grandpa died of ALS. But they see Chris and, aside from his right hand and forearm, he is unchanged, and they seem to take that at face value. They live fully in the present without worries about what the future might hold.

Adults are not so good at that, though, and as the three of us sat around the dinner table that night, I found myself thinking that this is what it would be like, if we lost him, if it was just the three of us.

The kids’ smiles and giggles and stories at the dinner table distracted me from the growing pit in my stomach. The difference if we lost him, I thought, would be the absence of those giggles, the crushing sadness that would fill the space where Chris once sat.

Then they went to sleep, and I was really alone. The nighttime quiet that filled the house — something I usually find peaceful — felt heavy and sad.

I walked up the stairs and checked on our daughter. I listened to her soft snoring and kissed her cheek. I sat on my son’s bed. I watched him sleep. I brushed the hair off his forehead. I took a photo of him to send to Chris, to document for the millionth time how, no matter that he keeps getting bigger and bigger, when he is sleeping he somehow morphs right back into our baby boy.

I am worried about him. When we took down the Christmas tree at the start of January he sobbed. Every time I took an ornament off of a branch he grabbed it from the box and put it back on. He was mad and he was sad and lately those two emotions keep bleeding into each other. I know he was so overtired from all the excitement during winter break from school and I know from talking to my friends with kids his age that his behaviors aren’t abnormal.

But for me now there is always this heavy underlying worry when my kids are off. Are they feeling anxious about their dad’s health? Are they worried, scared, anything?

Our trips to Toronto are always hard on Willa. She handles our actual time away fine, but as soon as I pick her up the day we get back she melts into my arms and laughs and cries at the same time into my shoulder. For the rest of that day, every emotion she had during the days we were away comes spilling out. I’ve learned on those days to take her home, give her a warm bath, put her in pyjamas and cuddle on the couch and watch Netflix until bedtime.

Usually Cohen is fine. He‘ll ask for a few more hugs than usual and some extra cuddles at bedtime, but he moves forward and accepts that these trips are good and necessary for Daddy. Our last trip here, though, he was so sad.

I knew it was because Chris wasn’t coming home with me. Since Cohen was a toddler he has struggled with Chris being away. I used to have to warn his preschool teachers so they’d know to give him some extra patience and love those weeks.

I made it home that trip just in time to take Cohen to hockey practice. Halfway to the rink I remembered it was his turn to be goalie. I told him so and he started sobbing saying, “I don’t want to be goalie if dad’s not there. I want him to shoot on me. I want him to help me get dressed. I’m not doing it without him!”

And, of course, that brought all my deepest fears to the surface and tears to my eyes.

I know how he feels. I don’t want to do anything without Chris anymore, either.

When Chris is away now I feel like part of my heart is outside of my body. I tie his shoes and kiss his lips and send him off for another day of work, and I am so grateful for that normalcy. But when he walks out the door each morning I feel like I am loaning him to the world.

Waiting for Dose 11 and showing me all the strength he still has in his upper right arm despite his loss of strength and muscle in his right forearm and hand.

When he was in Boston I was so happy for him, but I also felt strangely jealous of all the people who got to spend time with him when I couldn’t. I truly believe that Chris is going to be healthy and independent for so long, but fear is a powerful force and when he was away all I could think about was what I was missing rather than what I have been given.

What I’ve been given is the chance to plan another summer of trips and holidays with my healthy family of four. What I’ve been given, already, is time that Chris’ diagnosis was supposed to take away.

I spent the last week asking myself, if I’ve been given all of this, what’s been weighing on me? What is it that I want? Yesterday, looking out the plane window as the mountains faded from view, I figured it out.

I want a guarantee that Chris will be ok.

When I was covering baseball, I loved endings. I was good at them. In journalism the end of a story is called a kicker, and they were my strength. I could almost always find a nice, clever way to wrap up my story in a way that, I hope, satisfied the reader. It was succinct, it didn’t leave you guessing, it completed the story.

But there is no kicker for this. There is no way to wrap it up. There is only this complete unknown, stretching out in front of me for the rest of my life. And I know that, really, that’s always been the case, that kickers only come in movies and books and, I guess in my case, newspaper articles.

I looked over at Chris, who was working on his laptop. He paused and told me something interesting about what he was doing.

I took a deep breath and let go. I’ll never have a guarantee. None of us get that.

But I have today, and I’m going to live it the best I can.


To donate to ALS Research in Chris’ name go to http://www.calgaryflames.com/snowystrong

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