BY JESSICA FEIN

When my husband and I were told our 9-year-old daughter Dalia had become “an eyes-on patient,” we had no idea what that meant, literally or figuratively. 

We were meeting with the social worker, who was prepping us to return home after three months in the pediatric intensive care unit. “Now that Dalia has a trach and is ventilator dependent,” she began, “one of the two of you or a nurse trained specifically in Dalia’s care will need to watch her at all times.” 

It made no sense. What about sleep? What about work? What about Dalia’s school day? 

We were lucky, she said. We qualified for more than 100 hours a week of nursing care paid for by a combination of our health insurance and Medicaid. “Some patients don’t get nearly that number of hours. And some families need to pay out of pocket.” 

We didn’t feel lucky. 

We couldn’t possibly have understood then the mixed feelings we’d come to have for the cavalry of nurses who would come in and out of our home – and our lives – over the next eight years. 

When you leave the hospital with a newborn, you might feel surprised you’ve been trusted to care for this brand new person. You’re exhausted and overwhelmed and trying to figure out how to feed the baby and install a carseat and tend to the tears. Your friends and family can show you the ropes, assuring you it will all be second nature in no time.

When we left the hospital with Dalia, we weren’t only exhausted and overwhelmed, we were also terrified. And there wasn’t a single person we knew who could help us figure out how to change a trach or clear a clogged food pump or use a cough-assist machine. We were prepared to love any nurse who materialized at our house to guide us.

I envisioned a nurse floating down from the sky a la Mary Poppins and creating order out of the chaos. 

As it turned out, we would meet some nurses along the way who seemed as magical as Mary. But for every A-plus caregiver, there were three or four who were barely passing.

We might have known before that there was a national nursing shortage. Maybe we saw a headline at some point or heard a news segment playing in the background while we cooked dinner. But we never thought about what that meant for the patients and families who had days – or even worse, nights – uncovered, or what it felt like to find nurses sleeping on the job because they’d been working back-to-back shifts without a break. 

We didn’t realize that to a certain extent we’d need to take whoever we got when it came to the nurses. There was no picking and choosing, no pile of resumes to sift through. And that was a problem, because the nurses were our lifeline.

The first time we discovered a nurse sleeping on the job, we were horrified. Our eldest child returned from school to find Dalia’s nurse taking a nap on the living-room couch – while Dalia was in her upstairs bedroom. That was the only day nurse we found sleeping, but we had to wake several who were dozing at night. That wasn’t all. We had one nurse quit mid-shift because she thought our house was haunted, and another who told us she thought we were God’s soldiers. 

But there were other nurses whose competence calmed us and who ultimately became like extended members of our family. And really, with the amount of time they spent in our home, they knew more about the ins and outs of our daily lives than our actual extended family. It was so different from the nurses in the hospital, where we were clearly on their turf.

Our home was no longer a private sanctuary where we could be as loud, messy, or cranky as we needed to be. Now there were people in our home, under the best of circumstances, more than 100 hours a week. And that was hard for me, a naturally social person, and even harder for my husband, who’s more introverted. 

It was a catch 22 of sorts. We desperately wanted and needed the nurses. In those early days we depended on them to help us keep our daughter alive. As time went on and we became expert in Dalia’s care – more knowledgeable even than most of the doctors – we needed the nurses so we could have some semblance of life as we once knew it. No day nurse meant no work for my husband or me, no school for Dalia. No night nurse meant one of us staying up all night by Dalia’s bedside. We traded our privacy for the security they offered. 

But while It was an intensely personal relationship, it was also oddly one-sided. After all, these nurses were with us when we were most vulnerable. They were there for the regular everyday stuff and also the high-stakes moments. They were in our daughter’s room overnight, while the rest of us slept. But we knew little about their lives outside of our home. Several years into our relationship with one of our most dependable, competent nurses…someone to whom I literally trusted my daughter’s life, I realized I didn’t even know her last name.

And yet for all the ambivalence I felt, all the last-minute call-outs and nurses who slept on the job, that social worker was right. We were lucky. 

We were lucky that we had nurses like Jane and Lori who gracefully balanced being a part of our family life but also apart from it, knowing when to step in and when to step back. We were lucky that they loved Dalia, and our other children, too. We were lucky they were experts at their job and that they provided a continuity of care between our home and Dalia’s school. And we were lucky that they treated Dalia with respect and dignity even as her functionality slipped away.

Last week, our youngest son played in his town-league baseball game. It was a chilly night, and as I huddled under a blanket with Nurse Jane, passing chocolates back and forth, I thought about how different our relationship is than any other I have. Dalia passed away just over a year ago, and Jane was there with us at her bedside until the very end. We couldn’t have imagined it any other way. I don’t see her every day anymore, but we’re inextricably linked. I look at her and I feel all we shared from those shaky days at the beginning through the ups and downs of the eight years that followed. She knew Dalia and she loved Dalia. She saw her for who she was at her core, for the pure love and kindness she exuded, and she reflected that love and kindness right back to her. She’ll always be part of our family, and for that we are lucky.

Jessica Fein writes about the mingling of joy and sorrow, mothering a child with a rare disease, and staying rooted when life tries to blow you down.  Listen to her podcast, “I Don’t Know How You Do It,” wherever you get your podcasts. Her memoir, Breath Taking: Rare Girl in a World of Love and Loss, is coming in 2024 from Behrman House Press. Visit her website or connect with her on IG for real talk about love and loss @feinjessica

Jessica is a CPN Blogger in Residence, an opportunity available through support from Sanofi.