Another Challenging Weekend

Jessica comes home

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Every weekend, I pick up my daughter Jessica from her group home and bring her to our house to stay for a couple of nights. She moved to the group home when she was twenty-eight. Now she is almost forty.

The years of continual caregiving and planning led to the eventual move to the group home and influenced the narrative framework for my debut memoir, The Shape of Normal.

Most parents of children with disabilities know it isn’t easy having a child like mine. In my case, my sweet daughter might ask me the same question over fifty times. My guess is her cognitive abilities are about the age of a five-year-old. She can’t read, but she has learned how to use a smartphone. Every morning she calls at 6 am, and if I don’t pick up, she’ll leave 15 or so voice messages saying, “Mom call me.” Or “Mom, member you say you pick me up this weekend?”

I remind her of course I will, but she keeps asking.

During the weekend at home, I try to respect Jessica’s desire to be as independent as possible. This can be extremely challenging when she decides she doesn’t want me to interfere. She doesn’t require help with the skills of dressing and is mostly able to manage her personal hygiene, but I admit I’ve often allowed her to go to bed without following up on whether she has adequately brushed her teeth or washed the shampoo out of her hair. Taking care of her has required enormous patience on my part, patience that gets quickly depleted.

While Jessica often wakes in the wee hours of the morning (she claims she can’t sleep) – when she’s at the group home, the house manager sends her back to bed. Whether or not she does go to sleep, is another matter. But when she’s at our house and gets up before dawn, she’ll turn on the TV and wait until we’re up. If she’s hungry, she will go into the cabinet and take chips, or pour herself a bowl of cereal. Sometimes I’ll open the fridge to find her leftovers, a bowl of sliced turkey covered with half a bottle of ranch dressing.

This past weekend, I heard her rummaging around in the kitchen at 1 am. I got up and told her she had to go back to sleep. “At least until five.”

But the problem with Jessica is she can’t tell time. It frustrated both of us when I asked what time it was when she got out of bed.

I had a feeling she was up all night. Everything she did the following day contributed to my annoyance, and I blamed myself for being intolerant. As I drove Jessica back to the group home, she kept up her running commentary. “You pick me up on Friday?” The fifth time she asked, I raised my voice with an emphatic yes. Then she switched to, “I sorry Mommy.” On repeat.

When I was ready to drop her off, the house manager was busy in another room, so I sat down and waited. One of the housemates, a young man who is nonverbal, kept approaching me and verbalizing what sounded like "Mom" or "Ma." It seemed he kept gesturing for me to talk to him.

I will usually acknowledge him with a nod, but I’ve never bothered to engage. He remained standing in front of me, demanding my attention. Something inside shifted and that was my moment of clarity.

I imagined what it must be like for him, and for all the individuals in that house. I put my hand on his arm & rubbed it and started saying whatever came to mind. I told him I was Jessica's mom, that his mother and I were friends, and that I wrote a book about Jessica. As I focused on his face, his open mouth, his slack jaw, and stared deeply into his eyes, perhaps what I saw resembled God. I turned to my daughter, realizing I was no longer angry. In fact, I suddenly felt like I didn't have to hate myself for being so intolerant. It’s okay to feel angry. What I didn’t expect was for that anger to be transformed into something that resembled love.