My phone rang, and the screen announced it was the nurse at the elementary school. A lump forming in my stomach, I tried to guess which kid was sick. One has asthma, so that’s always a safe bet in changing weather, but the youngest has a twitchy stomach and the biggest was up until all hours reading, so it could be any of them. When I answered, it was the school social worker on the other side.
“I just wanted to let you know how your daughter is doing today,” she said, and again I squirmed.
The second week of school their father had his third surgery for brain cancer, after which he spent almost a month in the hospital. He suffered a stroke, brain swelling, and a myelin injury, causing him to lose the use of much of his left side. Because of his surgeon’s protocols the only times they saw him before he came home, he was still covered in blood and ointments, his scar a mass of stitches, staples, and black scabs. He was depressed, confined to bed and a wheelchair that scratched his left arm as it dangled limply at his side. He put on a brave face for them, smiled with his mouth if not his eyes, and told them he was okay even when he didn’t believe it.
During the first week, I had many conversations with the children about Daddy. I told them what Daddy was doing while they were away, what was going on at the hospital, what he said and what jokes he made. And when they were scared or sad, I talked with them. “It’s okay to be sad,” I said. “It’s okay to be scared. I’m scared and sad, too. It’s scary, and it’s sad. But Daddy’s doing great, and he’ll come home soon, and at least we don’t have to be scared and sad alone. We can be scared and sad together.”
As worried as I was about their father, I worried more about them.
I had spoken with the school social workers the week before school started, and we had established a plan. But now, nearing Thanksgiving break, things were not, as the children occasionally reminded me, “Back to normal.” Daddy still hadn’t returned to work. He still couldn’t drive. We were still eating takeout and meals put into our freezer by friends and family almost every night. Our house was a mess. Daddy was still learning how to do things like button a coat; he walked with a cane and leg brace. One day a week, a family friend made the children breakfast and packed them off to school because their father and I had driven to the hospital before dawn for MRIs and chemotherapy infusions. On those days they didn’t see us until bedtime, when we arrived without easy answers to questions about Daddy’s well-being.
“It’s okay,” I’d tell them. “Daddy’s been living with brain cancer and brain surgeries since before you were born.” But I didn’t tell them it was why they were born, that under the shadow of a terminal diagnosis we hadn’t wanted to waste time by not having the family we dreamed of, and our three children in less than three years were the result.
I always thought to myself, in the quietest, most private places in my brain, that as long as he lived until the children were eight, they would remember him, they would know him. This surgery and all its complications came two months after our youngest turned seven.
The voice of the social worker rang in my ear, chipper but concerned, and my shoulders tensed as I waited for the shoe to drop. Was my daughter wandering the halls of her elementary school, again, crying and overwhelmed? Was there some outburst in class that sent her to the social worker’s door? Was it Daddy’s fall the day before, when her friend’s mother had needed to bring her home from basketball practice because I was too busy making sure he hadn’t suffered serious injury to go and get her?
“She’s worried about you,” the social worker said. “She says you’re having a really hard time right now.”
The words seemed to take a long time to reach my brain. “What? Me?”
“Yes, she says you’re overwhelmed.”
I choked out a laugh. “Yes, well…”
“Are you okay, Mrs. Grover?”
I wanted to beg her not to ask me that question, but instead I took a deep breath. “Things are hard, but it’s getting better.”
“I think you should talk to the kids about it. It’s okay if you’re having a hard time.”
“I know,” I said. “I just wish she wouldn’t worry…”
That this was hard on me felt like the most selfish thing to acknowledge, when the person so clearly suffering the most for this was my husband.
The social worker recommended I order in pizza or something for dinner, as though we weren’t eating pizza three nights a week already, and said something that sounded kind and compassionate before saying goodbye. I wasn’t listening. I was too busy holding my voice steady through the waves of guilt pummeling over me.
In fairness to my daughter, I was not okay. The amount of overwhelm I had been living with was suffocating, unbearable. Night after night I’d lay a picnic blanket on the floor in front of the television and pass out slices of pizza, reheated pastas, take-out Pad Thai, and sink into the couch too tired to read a story, too demoralized to clean the sink full of dishes, too busy making notes in my husband’s treatment binder or sending emails to his doctors to sing a lullaby.
No, Daddy wasn’t back to normal, but it was really me not being up to my typical antics that was having the bigger impact on our household. Twelve years of practice had turned me into a superlative advocate and caregiver, but I never learned to take care of myself.
That’s the thing about caregiving. It’s true of parenting, too. You have to make yourself a lower and lower priority until the pressing needs are met. You can live without showering. You can survive eating PB&J crusts over the kitchen sink. You can even scrape by with only a few hours of sleep a night.
But we all know that, at some point, something has to give.
Caregiving for somebody ill, somebody terminally or chronically ill, there might be expectations for improvements, or there might not. The point at which you take a break might come at unacceptable price. The burden of care, as willingly as one takes it up, carries the threat of an expiration date.
Self-care, though. The closest I ever got to understanding that was telling my husband, my best friend, that I needed a date night or a few hours alone in the bath. The only form of self-care I knew was relying on him, my partner, to hold my burden so I could rest for a moment.
Now, for the first time, I found myself carrying that weight alone. He could not cook for them, could not drive them to their activities. He could not take them to check-ups or dentists. Could not clean their laundry. Could not pick up their messes. Could not be left alone.
No, Daddy wasn’t back to normal, but it was really me not being up to my typical antics that was having the bigger impact on our household.
That this was hard on me felt like the most selfish thing to acknowledge, when the person so clearly suffering the most for this was my husband, the provider and father who was always carrying the weight, not only of paying our bills, but of household management. Maybe he wasn’t the best at these tasks. Maybe he always left the clean laundry crumpled and tangled in the baskets. Maybe he never quite figured out where everything that went into the dishwasher belonged. Maybe he never got good at cooking anything more complicated than mac n’ cheese. But he did those things. He took out the garbage. He shoveled the drive. He changed the light bulbs.
“You’ll get there,” I said after each disappointment. But until he did, the job was mine.
Your daughter is worried about you, the social worker said.
I am learning to be a better caregiver, and part of it has to be taking care of myself. And my husband is getting better. He’s getting ready to start going back to work. To start driving again. We’re learning what objects we can replace with versions that can be operated one-handed. We’re learning where to find clothes he can wear, shoes that stabilize his ankle, how to handle situations like, “What if I need to walk in the rain and have to choose between carrying an umbrella or cane?” We’re working on it.
I’m working on it.
I don’t want the children to worry about their father, but I also need to know they don’t have to worry about me. I’m de-cluttering, downsizing. Making simple meals.
The kids are helping, sorting through their stuff for unwanted objects, packing their own lunches, handling the dishwasher and the garbage. They’re big enough for these things.
“I wish things would go back to normal,” my ten-year-old cries, and I sigh and hold her hand.
“We just have to hold on,” I tell her, “and normal will find us again.”