When Katherine first started bringing her very medically-complicated daughter into our pediatric ICU, we all marveled that her child had even survived the early months of infancy. All the odds were against them, but they were tough, this mom and daughter pair.

I didn’t know what her pregnancy and birth journeys were like. Did she know of her daughter’s condition while the baby was still in utero? What were her expectations of her child and herself in the moments immediately after her daughter was born? Did she want her child, given the extraordinary ways this child would complicate her life? Did she have regrets? Or only the loving determination to find whatever good she could offer this baby, who would never grow to a stage where she could independently care or advocate for herself? What if the definition of good was never entirely clear, or changed dramatically in form and promise and potential with medicine’s continual advances?

I didn’t know the intimate details of her journey, but I knew that they brought her here to our unit, where, over the course of 10+ years, we would spend days, weeks, months at a time taking care of this girl, Katherine rarely leaving her side.

*

I struggled with starting a family. Not that we had fertility issues, but I had issues. I was scared to become a mom. I didn’t think I could be a good mom. I loved my independence and freedom to pursue passions and goals in life without the intense obligations and sacrifices motherhood would entail. It was with no small amount of trepidation that I finally agreed to try for kids with my husband, and it didn’t take long to get pregnant with the first girl, then the second daughter almost two years later.

I’ve loved my kids, and they’re really wonderful kids, but I haven’t always loved them well. Or perhaps a better distinction is that underlying all the chaos and stress and busyness of parent life, I have deeply struggled to love the role and responsibilities of motherhood. So much pressure, so much obligation to others that entails sacrifice I’m reluctant every day to make, so little personal space. In a painfully complicated world, I don’t always know how to find good for both myself and this family I’m responsible for, and sometimes I’m so weary of being the responsible adult. If I’m honest, I sometimes envy the freedom of child-free friends who see who they want to see, do what they want to do, have no other logistical or life barriers to pursuing the things they feel they want or need for themselves in the moment. Selfish and ungrateful, I know, but I can’t pretend that tension hasn’t been a part of my journey. People tell me I’m a good mom, but oh if they could see how I struggle. Well, maybe they can. In my lowest points of frustration, I can be a bit short with others around me, though they may not know why.

*

Despite the dozens of medical personnel she’s interacted with over the years, Katherine has an uncanny memory for details she picks up about our lives. She remembered from years ago that I had two kids at home. She remembered I’d already been married for a few years before her daughter’s first long-term admission to our unit. She remembered I used to enjoy running long distances when I was younger.

I held Katherine at a distance for a long time. She’d ask about my kids and I didn’t want to share many personal details. I also didn’t know if it was hard for her to hear about my life as a mother with non-medically complex kids, my mundane struggles with how much my children talked all the time, how they always wanted me to take them to fun places when I only wanted a break from all the packing up and shuttling around, how they were adjusting to new grades and teachers and friends at school. Her daughter remained non-verbal, bedbound, completely dependent at home, while my daughters drove me insane with their words and activities and their own kinds of incessant demands.

But another reason I held Katherine at a distance was because I didn’t know how to fully suspend my judgment of her. “She really needs to get out of that room more.” “She can be short with her words sometimes, and we’re just trying to help.” “I don’t know if she’s really choosing what’s best for her child.” I’m guilty of all of it, all these thoughts. I put up walls with my judgment; me of course on the knowing side, her on the questionable side.

*

I was surprised at the new wave of intense struggle with motherhood that came over me with the start of this summer, my kids without any obligations or plans except to ask me what the plans were for each day and obligate me to care for and entertain them. I was still recovering from all my obligations to them through the COVID pandemic with schools locked down and children at home for Distance Learning. When my kids went back to school in person for this past school year, I slowly began recovering from the COVID parenting experience, only to find at the school year’s end that I’d forgotten how intense it was to transition into “normal” summer plans with kids.

I found myself feeling once again weary of the motherhood role, at times resentful of its demands, and intensely lonely for meaningful adult interaction as I performed the same mundane parenthood tasks and struggled to stay chipper and interested in kid-conversations about toys and poop and the most trendy kids’ shows. How do I get out of my rut of a perspective about motherhood? Why do I feel so alone with all of this?

*

I came to work and saw I was assigned to take care of Katherine’s daughter, and Katherine by association. I didn’t feel ready for it. Moral distress, that’s what they call it. You lose your empathy with morally distressing cases because you disagree so deeply with the choices the parent is making for her child. You feel such a gap, such disconnection with the caregiver on a mental, emotional, spiritual, social and even physical level, especially if you’re the nurse performing all the physical care that you’re not sure you should be performing.

The night nurse before me, Jodie, began to tell me the latest details about what was happening with Katherine’s daughter. We all knew she was very sick, and so slow to recover from this most recent episode of acute on chronic kidney failure. Would we just continue our specialized form of dialysis forever? Was Katherine actually considering putting an end date to it if her daughter stayed in limbo with her recovery?

I was ready for Jodie to roll her eyes at the situation, just as we’d all been guilty of rolling our eyes. Moral distress creates a gap, and dehumanization threatens the parties on both sides of that gap unless some form of reconnection can be made. I felt myself approaching this gap.

But Jodie continued on with the story. Katherine knows her daughter is sicker than ever; after all, she’s been her main caregiver for 11 years and sees how bad it is. She broke down sobbing uncharacteristically the other day, so torn up about what is best for her child. She’s also completely alone in there. She barely ever leaves the room because she feels so obligated to stay with her daughter. She’s exhausted and needs support, but she’s so alone.

Jodie never rolled her eyes. She spoke of what she saw: a mother tethered to the care of her child in a small room day after day, trying to figure out what was best, isolated and without support.

*

As I listened to Jodie, I looked through the windows of the room and saw Katherine rising from her bed for another day.

I saw what Jodie saw. A mother, tethered to the care of her child in a small room, trying to figure out what was best, isolated and without support. I thought of my own recent struggles with motherhood, and felt my walls come down.

I entered the room, and greeted Katherine.

“Hi Katherine, I’ll be with you today.”