The Gap

May 3, 2015, by Kristin Neva

“Did you think I was as old as you?!” He looked at me incredulously.

Ouch.

I was at a coffee shop with a writing group. A fellow writer also grew up in the area. “What school did you go to?” I asked, thinking we might play the who-do-you-know game and once again confirm that there is only one degree of separation between Yoopers.

He graduated from Houghton High School.

“I went to Hancock,” I said, “but my best friend went to Houghton. What year did you graduate?”

“2005”

“Oh,” I said. With his facial hair, it was hard to tell he was ten years younger.

I am fast approaching forty.

I’m at the age when many people come to realize life is not going to go as they expected.

Until just a few years ago, my life seemed to go according to plan. Graduated high school. Went to college. Had a rewarding job coordinating a tutoring program at an inner-city ministry. Met and married Todd who had a good job at a good company. A couple years after we were married, I was delighted to become a stay-at-home mom to Sara. A few years later, Isaac was born. We had dreams to travel, renovate our 1925 bungalow, and have more children.

We all had dreams when we were young, but then, at a certain point, life is what it is. My friend thought she’d be a business woman, but has found herself at home with four kids. I have another friend who dreamed of being a mom, but encountered infertility, then hoped to adopt through the foster care system, but thus far remains childless. Others thought they’d marry, but remain single. Other friends struggle financially.

Life doesn’t turn out as we expect. That gap between unachievable expectations and reality is called disappointment.

When Todd was diagnosed with ALS, we were more than disappointed. We were filled with grief. Our reality collapsed.

Would baby Isaac even remember Todd? Some people with ALS are cut down and die in less than a year. The hope we had for the future became unachievable expectations.

My once active husband, who used to remodel the house in his free time, never imagined that he would be confined to a wheelchair, his limbs nearly completely paralyzed. I had always imagined a family life including physical activities like bike rides, hiking in national parks, and occasional winter vacations to some place warm. I never thought I would be my husband’s caregiver in my thirties. I transfer him with slings and lifts. I help him toilet, bathe, and dress. I take care of the kids, prep meals, and run errands. I never imagined I’d be doing it all myself.

Over time, we’ve had to adjust our expectations, and we have to keep adjusting as the disease progresses. But, Todd tells me that he is not confined to a wheelchair, instead liberated by one.

Todd continues to approach life with a smile. He gets out as much as he can and acts as a sounding board for his friends. He listens to and encourages me. He uses voice dictation software to write. He spends time with the kids. We enjoy family movie nights and attend sporting events together. This is our life. I’m a mother, a wife, and a caregiver. I’m committed to my husband and to my children, to my marriage and our family.

Also, I’ve developed a new passion: writing. Todd and I wrote our memoir Heavy together. More recently, I’ve been writing fiction. Writing is a good creative outlet for me in the midst of never-ending laundry and dishes. I completed my first novel, Snow Country, and found a literary agent. He submitted it to a half dozen publishers, and we are waiting to hear back from them. In the meantime, I am working on novel number two: Copper Country. I write and Todd is my editor-in-chief. He helps me brainstorm and structure my stories. Writing has brought energy to our marriage.

Todd says, “The gap between unachievable expectations and reality is opportunity.”