Leaping from girlhood to motherhood in a single bound does not allow much time to process this dramatic transition. At 18 years old, I was with child. At 19 years old, my baby was born 3 1/2 months premature. She weighed 2 lbs. 6 oz. and was 14 inches long. The night she was born, it was like I went through a sort of identity warp. So was my pregnancy, in slow-motion. The girl in me, the mother in me, the woman in me, all swirling together like sticky taffy. Different colors, different consistencies, and different flavors. All in one form, yet distinct. It was an internal menagerie. But I had a good head on my shoulders and a lot of fortitude. I would need it over the coming years, which would be more than I ever could have bargained for.
As a new mother, you fall in love with your baby. Thrilled, you are eager to go home to indulge in the joys of motherhood. But this reward of pregnancy, childbirth and long-awaited anticipation evades mothers of sick babies. It would be a three-month wait in the Neonatal Intensive Care Unit (NICU) until we would be able to see the light of day. While the clock ticked more slowly than in any other context, I waited. Not idly, however. I worked seven days a week as a personal care assistant (PCA). I suppose this helped to pass the time, but I wanted to be nowhere but near the little life I had just created that lay in an incubator in the corner of a hospital ward.
My daily routine was active, to say the least. I did bath visits in the morning. Margaret was one of my favorites, and she lived near the University of Minnesota, where my daughter was in the hospital. During bath time, she wanted me to sing with her while I washed her long gray hair that she normally kept in a braid. She had raised a son as a single mother while working in a factory. She had an amazing, happy spirit, and loved to laugh with me. When we sang together, she often giggled and said, “My neighbors probably think there’s a party going on over here.” She told me that I looked like a movie star, and insisted that I have some potato chips while she snacked from an open bag and watched “The Price is Right” on television. Her apartment was cozy and she seemed to feel right at home there, especially in her lazy boy chair, parked in front of a large television with a wooden veneer. She certainly brightened my day when I visited her. In fact, she was a bright spot that helped get me through the long months while I waited for my baby to improve.
In the afternoons, I worked with an 11-year old boy, named Chris. He had multiple disabilities, which were physical and intellectual — and autism. Some of his behaviors were challenging, and he often hit me. It was hard for him to control his emotions, but he was a sweet boy who seem to like me well enough. I would take him to the community center so that he could interact with other kids. They were very welcoming, and he sometimes played ball with them. He had an older brother and sister, and the family of five lived in a house in south Minneapolis. His mother was very outgoing and feisty, and his dad was very quiet and passive. The older siblings were typical teenagers, and didn’t say very much. One of the toughest parts of the job was making sure that Chris took his bath. He sometimes didn’t like going in the water and I had to work really hard to help him stay calm. It was quite a production and sometimes the bathroom would be a huge mess afterward. He was a good eater, though. He would walk around the house with his food. Cheese sandwiches were one of his favorite snacks after school, and he could eat quite a few of them. Because I worked such a long shift with Chris, I had to carve out time to pump breast milk in the bathroom when he was settled somewhere. I needed to pump breastmilk every two hours, and store it and small plastic cups that I labeled. Some of it went into a refrigerator, and some needed to be frozen for later. It was nerve-racking trying to fit in this task while I worked with this family. It was a pretty stressful job, but it was good that I had so many hours together — a rarity in home care. Most of the time, you get two or three hour shifts, and nothing over four hours, normally.
After Chris, I would go to the hospital to visit my baby. I was at the hospital every chance I had. I usually parked in a lot across from the hospital, and sometimes listened to music on a Walkman as I made my way up to the floor. Usually I went after my morning shift because I wouldn’t wake up until I needed to go to work, after spending most of each night at the hospital. But I went between every shift after that, and stayed most of the night until I couldn’t stay awake anymore. It would get pretty late because I worked an evening shift until midnight with a man named Mike.
Mike is still a dear friend to this day. His mother, too. They changed my life. Completely and wonderfully. Mike broke his neck in a football accident when he was 16 years old and in high school. But he still went on to go to college at Berkeley, finishing at the University of Minnesota. This was after he spent months in the hospital and rehabilitation. I learned all about it, and found him to be fascinating. He became a teacher and then a motivational speaker, and has written a book about his life called “I Still Believe in Tomorrow.” Mike told me that one of his doctors early on suggested that he learn everything about his body after his injury so that he could teach other people how to assist him. He walked me through everything that I needed to do, including changing ostomy bags that went over openings in his abdomen. I learned how to transfer him from his waterbed into his power wheelchair, and back. I also transferred him into and out of a shower chair that rolled into a shower in his bathroom, where he kept a pet turtle in an aquarium. Sometimes I gave the turtle a few pellets of food. Mike did a lot of things for himself, using adaptations. For example, he had a handle on his brush so that he could put his hand through it, instead of gripping it because he didn’t have the dexterity. He brushed his own teeth, and washed his own face. He had other adaptations around the house, so he was able to use a computer and lock his own door. I learned so much from Mike and he told me that I deserved better than I had in my current circumstances. He empowered me.
As time marched on, I grew through my experiences — many of the more enriching were connections with caregiving. The people I worked with taught me a lot about life, resiliency, perseverance, patience, and optimism. My schedule was grueling, too intense actually, but the plus side of it was having a purpose and knowing that I did, I had everything. I had a spectacular reason to live and fight!