I made for a very noticeable pregnant woman. I’m petite, barely five foot two, small-boned and normally no more than 105 pounds. By my third month I was showing. By my fifth, people asked if I was carrying triplets. By the end, I’d gained over forty pounds. My belly took on the shape of a torpedo. One friend joked that I looked like a caricature of a pregnant woman. Another said the baby appeared to be sitting with his legs spread out in front of him. Now, ten years later, people I don’t recognize occasionally stop me on the street to comment on how grown up my son seems considering that they still remember seeing me back when I was pregnant.
Other than my size, I’m sure it was my gait that made me so memorable. Ordinarily, I can be shy about bringing attention to myself, especially regarding my disability. But there I was, awkward and ripe. A limping blimp leaving her indelible mark on passersby simply by walking around the neighborhood.
I didn’t feel especially cumbersome. That’s one of the gifts of having a disability; I was used to being somewhat unwieldy and off-balance when I moved. It felt natural to me. I had a healthy pregnancy and carried Ethan to full term. My cerebral palsy proved not to be a factor at all. Maybe that’s why I was so ill-prepared for how it could affect my ability to mother.
I chose to have my baby at St. Vincent’s Hospital, in New York City, for a number of reasons. It was important to me that I could give birth with the help of a midwife instead of a doctor and still have a neonatal ICU right there in case of an emergency. I also liked that my husband Richard and the baby could stay in my room with me at night. And St. Vincent’s nursing staff was well known for being supportive of breastfeeding, which proved to be difficult for me. Because cerebral palsy causes my arm to be both weak and tight, it was impossible for me to position the baby. The nurses helped by building an elaborate structure out of pillows that propped Ethan up to the breast. It worked well, but I was unable to recreate it on my own. Not that I had many opportunities to try. Ethan had trouble staying awake his first few days of life. He was losing weight and the nurses were concerned about keeping him hydrated. Whenever he roused enough to want to nurse, we were quick to oblige him. If Richard wasn’t there, I’d ring for a nurse who would rush in and begin stacking pillows around me.
I was in the hospital for four nights, only one of which Richard didn’t stay with me. Late that evening, Ethan woke up, crying and hungry. I rang for the nurse, one I hadn’t worked with before, but when I told her I wanted to feed my baby, she refused to help me.
“No,” she said. “The nurse I relieved told me he’d already eaten. He doesn’t need to be nursed again until morning.”
As hard as it usually was for me to bring attention to my disability and what I couldn’t do, this felt different. We were talking about my child here. I had no problem advocating for him.
“He’s hungry and I want to feed him. I’m not asking you for advice. I need you to help me get him into position.”
“No. He already ate. I was told specifically.”
With that, she turned on her heels and left my room. When I rang for her again, she ignored me.
At a loss, I paced the room, patting my crying baby. The last thing I wanted to do was deny him the nourishment and comfort of nursing. Even if Ethan hadn’t been having trouble waking to be fed, I believed in breastfeeding on demand. I trusted him to know his own needs and wanted him to grasp that I was going to be there to meet them. What I hadn’t counted on was depending on others in order to do that for him.
I rang for the nurse one more time but she still didn’t come. Resigned that I wasn’t going to receive any help, I did my best to recreate the props the other nurses and Richard made for me so easily. I couldn’t do it while holding the baby, but if I laid him in the crib while I set up the pillows, they’d topple as soon as I tried to settle back in with him.
Next I attempted to position Ethan without pillows, first by lying down then by mimicking photos I’d seen of something called the football hold. Nothing worked.
While Ethan cried harder and harder, I tried not to cry myself. I held him and sang to him and apologized for failing him so early in his life. Eventually, he fell asleep again.
In the morning, I spoke to the head nurse and told her what had happened. She was furious. It seems the night nurse worked per diem and didn’t receive the same training as Saint Vincent’s own staff. But my experience changed that. The hospital stayed in contact with me after I got home, interviewing me over the phone so they could document the incident. They later created a program where anyone who worked on the maternity ward, even for one night, was instructed on the importance of supporting breastfeeding mothers and following their wishes.
Still, that long awful night in the hospital haunted me. I’d think about my helplessness and my three-day-old son’s dependence on me and feel remorse. I’d think about the nurse’s oppression and feel enraged. It was years before I could tell the story without crying. But it forced me to acknowledge that parenting is truly physical labor. It was work I could do but I would need help. And to get that help, I’d have to be loud and persistent once in awhile. Even if it makes me noticeable.