My son is settling into the sadness.
Last night I tucked him into bed, kissed him on the forehead and went to do the same for his sister.
“Mom? I have one question, about ALS.”
This is our new bedtime routine. After his energetic body has calmed down and the busyness of his 9-year-old mind has quieted, the ALS questions rise to the surface. I doubled back and sat on his bed, brushing the hair from his forehead as he talked.
“Daddy’s voice is getting harder to understand. Will he lose it? Will he talk with the cool computer like Steve Gleason?”
My heart both sank and soared. I was thrilled he used the word cool to describe how Steve talks, and I was heartbroken that, now, these realizations come fast and furious for him. The changes to Chris’ swallowing and his voice have meant our little boy is having his own personal reckoning with this disease.
He is too young for this, but ALS doesn’t care. And so I sit in his bed with him each night, listening to his questions while my heart crumbles in my chest. I fumble around in the dark, searching for answers that bring him peace without false promises, that let him know he’s not in this alone and that all his feelings are normal and valid and the same ones I have, too.
Tonight the topic was nightmares. He’s been having more of those.
“Do you have nightmares?” he asked.
“Yes,” I said, “we all do.”
“What is the worst nightmare you have?” he wanted to know.
“Oh, I suppose when something bad happens to you or Willa or Daddy, and I can’t help you,” I said.
He turned his face from mine into his pillow, and I could see the tears squeezing out of his closed eyes.
“You feel that way, too, don’t you?” I said. “Like you can’t help Daddy right now, and that’s all you want to do?”
He nodded yes, his head still buried in his pillow.
I kissed his dark brown hair and rubbed his back and told him I know how he feels. I told him that the way we help Daddy is just to love him as best we can. I told him that no one in this world, not even me, loves Daddy the way he does, and that means everything to Daddy.
And then we sat there together and cried for a bit. I told him how proud I am of him. How much I love him.
From the next room his sister called for a drink of water. I brought it to her and sat beside her while she drank and told me about what happened at recess, and I thought about how much understanding separates them. They are three short years apart in age, but a world apart in grasping what is going on.
For 6-year-old Willa, there is just acceptance. She loves her daddy and matter-of-factly tells anyone she meets, “My daddy isn’t like other daddies. He has one hand, and sometimes he talks funny.” This happened last week on a sledding hill. She told a newly-minted buddy her life story, grabbed her sled and zoomed away, squealing and giggling with glee all the way. It’s a fact that doesn’t go beyond the moment for her, and I am so grateful for it, for this time while her brain lives only in the present.
For Cohen, though, there is an ever-increasing understanding of the future. Of this disease. Of what it could take from him.
Another night during our bedtime soul searching, he was just plain sad. Sad that Dad can’t eat many of the foods he loves anymore, sad that his voice is changing. I told him sometimes you just have to be sad. That sometimes it happens to me, too. I told him that when I’m sad it helps me to think of things I’m grateful for. I asked him if he wanted to try. He didn’t hesitate.
“I’m grateful I have a Daddy who is here,” he said.
And again my heart crumbled. What a thing to be grateful for at 9 years old. When I was 9 I was thankful for not having cavities at the dentist or getting to have ice cream after dinner. I wasn’t grateful my parents were alive because I didn’t know there was any other possibility.
I can’t take this from my children, and I’m not supposed to. This is part of their story, just like it’s part of mine and part of Chris’. What I can do is love them and guide them and talk to them. I can cry with them and cuddle them.
I know we all have two choices when we are dealt a hand like this in life — we can be angry and turn inward or we can look for love and turn out. We will still be angry and sad, but we can use the pain to more acutely feel the joy and the heartache to more profoundly see the beauty. And it is my job — and my promise to them — to try like hell to hold their hands through this journey in a way that allows them to see the immeasurable value in the latter path.
Tonight before bedtime Cohen stood at the fridge filling his cup with water. We had just finished reading a chapter of “On the Shores of Silver Lake,” by Laura Ingalls Wilder. I read this series voraciously when I was Cohen’s age, in large part because many of the books took place just 30 miles down the road from where I grew up in small-town South Dakota.
Like all pioneer families the Ingallses have hardships. They lose one child and another ends up blind after a bout of Scarlet Fever, but Laura writes about the simple joys of her prairie life so beautifully — about the warmth of their cozy home, about the days and nights of peaceful sewing and singing, about the small Christmas presents they all make for each other and the nights around the fire while Pa plays the fiddle.
“I think these books will just keep getting better, Mom,” Cohen said. “Because their life is hard, and it’s also really, really good.”
I stared at him, amazed at the existential understanding contained in his tiny little body.
“You’re right, buddy,” I said. “And isn’t that just like our life? It’s hard, and it’s is also really, really good.”
Enter your email address to get notifications of new posts and podcast episodes sent right to your inbox.
By Kelsie Snow
Show Your Support
Follow me on Twitter
- Q&A: Chris and Kelsie Answer Your Questions
- Living Impossible: Steve Gleason on Radical Acceptance & Life with ALS
- Not According to Plan: Nicole Briscoe on Infertility and Miscarriage
- What if it All Works Out: One Year Later with Sandra Abrevaya