71: Date Night

71: Date Night

From Chicken Soup for the Soul: Family Caregivers

Date Night

Worries go down better with soup.

~Jewish Proverb

The atmosphere is swank and intimate, the dragon roll artfully arranged. The aroma of sweet sushi rice, tangy wasabi and fresh, grated ginger makes my mouth water. Sitting across from my husband at a cozy table for two in a neighborhood sushi bar, for the first time in more than a year, I should be celebrating the moment.

Instead, my mind is at home. On my middle daughter, Elena.

I check my cell phone for the third time since sitting down. No messages. Maybe I should call home anyway. Elena’s flirting with another infection, and I don’t want our sitter to be blindsided if a fever suddenly hits.

My thumb is hovering above the call button when Phil clears his throat. He’s studying me over the top of his glass of Chardonnay.

“What?” I ask, suddenly feeling guilty.

“It’s hard to turn off, isn’t it?” he says. “I mean, I’m having a hard time relaxing, and I have more practice than you do. At least I get out of the house every day. But you…”

“Live, eat, sleep, and work with my boss?” I say.

Phil smiles and sets down his glass. “Something like that.”

Our 19-year-old daughter doesn’t actually sleep with us. But we keep a baby monitor in our bedroom for when she needs help in the middle of the night. And since I’m Elena’s primary caregiver during the day, I’m really on call 24 hours a day.

A couple strolls by our table. Their steps are light, and they’re sporting goofy grins as if one just shared an inside joke with the other. We used to be that couple. Carefree. Playful. I catch Phil watching them, and wonder if he ever imagines what our lives would have been like if Elena had never gotten so sick.

It happened one July. The day hot and humid, the sky so bright it hurt to look at it without squinting. One minute Elena, then nine, was playing dress-up with her sisters and cousins, the next she was curled up in a fetal position in her yellow Disney princess costume, screaming and holding her head as if it were about to explode. We begged her to tell us what was wrong. She groaned before slumping in Phil’s arms, limp and unresponsive.

We didn’t know it at the time, but Elena had suffered a ruptured brain aneurysm. Two weeks she lay in a coma, but by the grace of God she returned to us. She needed to learn how to walk, talk, and be nine again. Against all odds, she did it, graduating from wheel-chair to walker to cane in less than a year’s time.

Unfortunately, Elena’s learning curve stalled. Ten years later, she is stuck at the second-grade level educationally, and unlike the majority of her old friends who are now heading off to college, she needs help with the most basic of things—toileting, eating, dressing, navigating stairs, and taking a shower.

Elena’s health continues to be a challenge as well. She is living with aneurysms in her head and kidney. She will need a kidney transplant in the near future. She has developed Moyamoya, a rare, progressive neurological disease in which blood flow to the brain is compromised, leading to symptoms of strokes, TIAs, headaches, and seizures. Neurosurgery is needed in order to slow the degradation, but frequent illnesses have prevented Elena from having the procedure.

If I could leave my job at the office, I know things would be better. But my “office” is my home, and my “job” is my daughter. Quitting is not an option.

“Are you okay?” Phil’s brow is furrowed, and his smile no longer lights his eyes. I shake my head, afraid if I answer I might start crying.

Away from the regimen of Elena’s daily routine, with its round-the-clock medicine, therapies, and blood pressure checks, there’s nothing left to distract me from the reality of what we’ve lost. Seeing the couple we used to be before we became caregivers doesn’t help. It makes my regrets palpable, gives them a seat at the table with us.

The server refills our water glasses. “Anything else I can get for you?” she asks.

I want to say “Yes!” The family life we signed up for. The career I put on hold. A future we can look forward to. “I’m good, thanks,” I say instead.

“Do you ever wish things were different?” Phil asks when we’re alone again. “I mean, you know, do you ever wonder what things would be like if we were a normal family?”

I practically choke on my water before thunking down my glass. “Every day,” I say.

“Really?” he says, and I don’t even need to hear the relief in his voice to know what he’s feeling. His face gives him away.

“Really,” I say, and I’m struck by the irony of the situation. All this time, I’d assumed I was alone in my thinking. All this time, I’d been wrong. To be fair, we’ve been living in crisis mode for so long, we’ve barely had time to breathe, let alone share our feelings. But now I’m convinced we need to try harder.

For the first time since sitting down, I relax. I reach for my phone, but this time I’m not checking messages. I create a new to-do list and label it “Date Night.”

I spear a piece of sushi and pop it into my mouth. “I have a request,” I say, after savoring the bite.

“Name it,” he says.

“Can we do this again next month?”

~Kim Winters

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