#17: Innocence

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.

Bedtime books, November 2020.

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.

A sunny sledding afternoon, November 2020, featuring Chris wearing the only sunglasses he could find in the car!

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.”

2 responses to “#17: Innocence”

  1. Kelsie, I wish I had wise and soothing words to use here, but have none. Just wanted to say that your writing is remarkable and the way you and Chris are dealing with this unfair disease is inspiring. I knew Chris a little years ago and knew Bob a little better from his college hockey writing days. Always enjoyed any chance I got to chat with either of them. Like countless others, I’m pulling for you and Chris and your family. Best.

    Liked by 1 person

  2. Kelsie….This morning was the first for me clicking on your stories. Why? My brother is struggling with these same issues with Parkinsonism. He is 70 and his wife is his 24/7 caregiver at home now. The feeding tube issue was just brought up to my brother by his speech pathologist on Zoom, my brother had to get up and leave the room, could not deal with this or the much needed discussion on DNR if needed in the future. Lots of fear, denial, anger, loss, grief….you get it, you two are going through all of this.

    I guess I just want you to know what a beautiful gift you have in your delicate words, compassionate feelings and ability to share such sensitive, personal feelings of grief with all of us. If you ever question what you are doing…don’t! You are doing the best you can with everything on your very full, overflowing plate. In one of your articles as you were cooking st the stove you said your tears dropped into the frying pan and sizzles. My tears flow that hard too, just dripping down my face sometimes like a floodgate that won’t stop. I thought, this living wife and mother can write! What a gift she has to affect others this way.

    I will pray for you and your family. I wish I could comfort you, the only way is through prayer and writing this to you in an encouraging way. I think you are an ALS HERO! God gave you this gift of writing to help others like me and my family. Thank you. I will keep following you on this journey. Do not give up. Keep writing, keep sharing your incredible, true, honest feelings. Your words will help heal your readers. I promise. I already feel inspired after one morning of finding your entries on my phone. I am do thankful that I took time to read about you. Be gentle with yourself. You are such an amazing caregiver to your husband. He is so lucky to have you. My heart was touched by your loving words. I needed to read them this morning. Gratefully,
    Janice Ford- Lynchburg, Va. ❤🥰🤩🙏🙏🙏🙏🙏🙏🙏🙏❤🥰🤩


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