Oh, the hugs I’ve missed as times have changed

“I really want to go to your performance,” my husband, Todd, told our daughter, Sara, who was starting a weeklong intensive with Eisenhower Dance Detroit that will culminate in a performance Saturday. “It’s just too hard to get out, and I don’t want to sit in the theater with my ventilator.”

Sara nodded, unsurprised, as her father hasn’t attended any of her performances for the past couple years because of his ALS, especially after his neck became too weak to comfortably ride in his accessible van and he’s felt self-conscious wearing his noninvasive ventilation mask in public.

On Sunday, Todd was sitting in his wheelchair in the dining room after I’d fed him dinner, and our son was in the backyard tossing and kicking a football around by himself. His high school football practices are starting next week. Sara was telling us about her upcoming schedule of classes and activities with the dance company.

“There are four things I really wish I could do,” Todd continued in a rare moment of vulnerability. “Attend your dance performances, play catch with your brother, hug your mother back, and eat at a Thai restaurant.”

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I felt tears form in my eyes right after he talked about hugging me back. That’s one of the things I miss most from the days when he was able-bodied. He often asks me to hug him, and he tells me he loves me, but it’s been years since he’s been able to wrap his arms around me.

Todd is generally positive and upbeat, even amid devastating loss, but he doesn’t talk much about his feelings. He just plays the cards he’s been dealt. In some ways his grace and stoicism have helped our family compartmentalize his ALS.

We’ve made an effort to allow our kids to live as normally as possible, doing such things as having Todd’s caregivers use a separate entrance to his office so the kids have their own private family space. We don’t ask the kids to help a lot with their father’s personal care, except for occasionally adjusting an arm or getting him removed from or set up on his ventilator (although they both know how to help him cough in an emergency). We have family movie nights, play board games, and talk about current events.

We rarely talk about ALS.

What we share

When it’s just the two of us, Todd and I often joke about the difficulty of living with a disability and his short prognosis, which inexplicably keeps extending to the horizon.

The other day, Todd had me check how many boxes of disposable gloves were left in the case underneath his bed. He’d ordered 10 boxes of 100 disposable nitrile exam gloves in April, and he had two boxes left.

“Ugh. I thought I had a lifetime supply,” Todd said. “I guess I’ll have to order one last time.”

It’s better to laugh than cry.

Life would be too sad if we were always talking about our grief, but I feel a deeper connection with Todd in those rare moments when he opens up about his sense of loss.

I miss his hugs, and I wish we could be one of those couples walking hand-in-hand along the waterfront. I wish Todd were beside me at our daughter’s dance performance rather than having to watch my mobile phone recording of it later. I wish Todd could be in the backyard throwing a football with our son — he’d have been able to throw harder and farther than I can. I wish we could go on a date to a nice restaurant.

I long for what was, and I’m wistful for what will never be. When Todd named the things he wishes he could do, I felt less alone in my grief — because I miss the same things he does.

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