There was a pause after a stream of kids got off the school bus in south Minneapolis, and then I saw Cole, who was 11 years old, moving intentionally down the bus steps, smiling and staring blankly, with his shock of blonde hair blowing in the crisp fall breeze. His empty-looking backpack was partway open, but there was nothing at risk of falling out. Without making eye contact, he made a bee-line for the front door, which was open, and barged into the kitchen. On the counter, he found string cheese and peanut butter crackers that I had made for him moments before. As if he hadn’t eaten all day, he scarfed them down and then asked, “Milk?” “Oh, sorry, Cole, I will get you a glass of milk.” “Milk!” he said, raising his voice. “One minute, Cole,” I reassured him, opening the refrigerator door and pulling out the carton of milk – then grabbed a glass from the clean dishwasher, even though it wasn’t dry. Before I finished pouring the glass of milk, he plunked himself in front of the television on his favorite chair, and found “The Simpsons.” Stomping his feet, he laughed and pointed, “Homer is silly!” We shared a chuckle. Then I asked, “Do you want your milk now?” “Yes!” he replied, taking the glass and drinking it down.
When the episode was done, I asked him if he wanted to do some stretching exercises and he agreed, picking up a toy truck he liked to play with. First we took off his leg braces, and he sat on the floor. Starting with his calf muscles, I held his left knee and pushed his foot toward him, then did his right side. In ten minutes, I stretched his calves, hamstrings, quadriceps, and hip flexors, to keep him limber because cerebral palsy causes muscle spasticity.
Cole was also autistic and intellectually disabled. He needed constant supervision and support because he was vulnerable and unsafe if left alone. Sometimes he got very anxious and overwhelmed, so he would hit and throw things. Once already, he had hit me in my pregnant belly when he wasn’t able to regulate his emotions. He didn’t want to feel like that, he couldn’t help it. I understood because I had anxiety and depression. We went to his local community center to play sports with other kids his age. They included him and treated him like a regular person. We enjoyed doing things together after school, and we had our routine.
After stretching, Cole liked to relax with video games. That was when I normally went to the bathroom to pump my breast milk for Imani, and put it into small plastic, labeled cups. It took me about ten minutes if I turned the machine on high, with both sides attached to suction cups that attached to milk bottles. Cole’s sister, Ricky, sat with him while I was gone, but I still hurried.
My breasts were tender as I turned off the suction and pulled the cups off. Every two hours, around the clock, pumping had to be done to produce enough milk and not dry up. This included getting up every two hours in the night to pump, so of course, I never slept. It took time to set up and finish, besides the actual pumping, and then it took a while to fall back to sleep – as exhausted as I was. Breast milk is recommended for babies, especially premature babies who are underweight and trying to catch up from the time they are born. Every day, I slept for about an hour at a time, worked all day, and was still recovering from child birth without a maternity leave. It was mere days until I returned to work, still stapled from a cesarean section, and trying not to tear the incision open as I did personal care assistant work for several people: Cole, Mark (a quadriplegic), Matilda (an elderly woman), and an elderly pair of sisters, Marie and Martha. This was where the benefit of youth made a difference, because for three months until my daughter came home, I slept a few hours a night – and then I continued to sleep a few hours a night. Looking back, I don’t know how I was able to function doing all that on my own as a 19-year old single mom with virtually no support system. I worked incredibly hard.
“Ricky, you can go in a minute, I’m just about done,” I yelled down the stairs, peeking out of the dirty bathroom that looked like it hadn’t been cleaned in months. Ricky didn’t say anything. She was quiet and seemed depressed, rarely smiling. It was hard to know what she was thinking, and she didn’t share. On my way back down the stairs, I was met by Cole’s mother, Beate, who practically cornered me. “Marriage is hard enough without a disabled child,” she hissed. Stunned, I had no time to react, just looked at her with big eyes that conveyed no understanding of what she meant. My heart started to race as I slowly distanced myself from her, returning to Cole, who was shrieking in the living room.