“In The Shadow of Huntington’s Disease”
Note to Reader: This is just a snippet of a story in progress, one chapter in the book Robin is currently writing about her experience living with and later losing her mother to Huntington’s Disease.
I wanted her to come.
I knew it was a long shot. I knew it would be asking a lot. But still, it was our wedding day, and I wanted my mom to be there. I wanted her with me.
Her nursing home life had grown small with the passing years. Anger had made her antsy early on, eager to get out and get away. But now it was different. She was different. Her walker had given way to a wheelchair, and her initial seclusion had now transformed into a sort of sociability. For the first time in forever, she seemed almost content.
Even so, I expected her to tell me “no.”
She had been gone for almost a decade and hadn’t been seen in so many years. Attending our wedding would mean going back. It would mean returning to her church, to her family, to a community of people who had watched her get sick, and who would be watching her be sick.
It was a lot to ask. It would be a lot to handle. But still, I wanted her to come. I wanted her to be with me on my wedding day.
Because she should be there.
Because she was supposed to be there.
Because it didn’t have to be this way.
Because we didn’t have to be this way.
Ten days before our wedding I went for a visit. Alone I traveled the country roads that took me back to my mother’s hometown and pulled up in front of her nursing home in late afternoon light.
Inside, she was easy to find. She was seated in the common room in what had become her usual chair, the one against the wall, half the distance between the two nurses’ desks that flanked the living room of that old converted house. Other residents moved about the room. Some were loud and talkative, while others sat quietly, congenially passing the afternoon.
I greeted Mom and sat down in the open chair next to her, happy to see that she wasn’t unhappy to see me. It had been a month since our last visit, and so we started where we always did: with updates. I began by filling her in on all that was going on. I shared details of what was new and what was happening with me and anyone else she ever knew and liked.
After that, I offered her some candy. I broke miniature Reese’s Cups into thirds and placed each bite into her mouth that opened in a rhythm all its own. As she ate, enjoyment and slobber escaped her lips from all sides. Slimy chocolate and slobbery peanut butter descended from her chin to her shirt, and I gently wiped it away using the clean towel always kept close by.
These were our rituals, our pattern. It’s what I knew to do and what she knew to expect of me and only once they were complete did I find the nerve to ask, “Mom, will you come to our wedding?”
Pausing hesitantly, I resummoned my courage, “I have it all planned for you. The nurses said they will help you get ready. Your friends can come and pick you up. They’ve offered to take you to the church for the ceremony and promise to bring you right back home afterward. Do you think you could do that? Will you come?”
Stopping for a moment, I tried to get a sense of what she might be thinking, but quickly decided it was best to press on. “Grandma will be there. I’ll make sure you get to sit with her. And, you don’t have to do it, but I’ve held a spot in the processional for you. I’ve lined up a wheelchair and reserved a space just for you, for the Mother of the Bride. But you don’t have to do it. Just come. I would really love for you to come.”
“Please, will you come?”
Disease had made her speech slow. It had been years since she had been able to carry on a full conversation, and yet I raced through my words as if she was going to stop me; as if she might interrupt and dismiss me before my request was even made.
She shifted in her seat and her arm jutted out in front of her while her fingers clenched and her wrist flexed. She was working on a response and it was taking visible effort. Dropping her hand on the chair she shifted herself back again. “We’ll…” she started, and her knee jumped and her other arm curled tightly to her chest as if pushing the words up and out, “…see.”
She didn’t say “no.”
Surprised and cautiously hopeful, I knew better than to ask anything more. I rested my hand gently on her arm, doing what I could to help calm the abrupt, uncontrollable movements that our dialogue had aroused. Then giving her a hug and a quick peck on the cheek, I said, “Thank you, Mom. I love you, and I’ll see you soon.”
The setting sun left me sitting in its last dusky hues while my car warmed against the late winter chill. Flipping on the headlights and buckling my seatbelt, I prepared to put the car in gear and pull away from the nursing home when I heard a knock on the passenger side window.
Startled, I looked up to see the nurse who had sat quietly working across the room while Mom and I visited. I rolled down the window, easily recognizing the look on her face. With equal parts compassion and pity, she said, “I’m sorry, honey, she says she’s not going.”
“But,” she went on, unwilling to take responsibility for removing all hope, “I have your phone number. If your mom changes her mind, I’ll call you right away. You never know, maybe she’ll change her mind.” But we both knew she wouldn’t.
My mom wouldn’t be making the trip. She wouldn’t be going back to that place.
My mom wasn’t going to be with me on my wedding day.
I wanted her to. I had hoped she might. But I had expected she wouldn’t. I had expected her to say “no.”
But, I had expected her to say it to me. And this time she didn’t.
Instead, she told me, “We’ll see.”
“We’ll see” because “I know this is important to you.” “We’ll see” because “part of me wants to be there with you too.” “We’ll see” because “the answer is no, but this time I don’t want to hurt you with it.”
I had expected her to tell me “no,” but this time she had said, “we’ll see.”
And with that, I could hear what she couldn’t have spoken.
Related post: CHAPTER 14: A Half Mile Down the Road
If you are interested in learning more about Robin’s full story right now, check out some of Robin’s earliest posts on the topic:
In the Shadow of Huntington’s Disease: How’s Your Mom
In the Shadow of Huntington’s Disease: Will You Be Tested