Dana RobbinsPLAYING PATTY CAKE WITH ONE HANDI am standing over the changing table. Liat, my first child, looks up at me with her dazzling blue eyes. She cycles her skinny legs and windmills her arms. When I finally succeed in getting a diaper under her bottom, she kicks it off. As I struggle to change her diaper, I break into a sweat. Six years earlier, I was a healthy twenty-three year old when overnight I became a disabled person when my brain ruptured in an Arteriovenous Malformation (AVM). I collapsed on a New York City street near my office and awoke after five days in a coma. My left arm lay by my side, bloated and inert. My left leg could not support my weight. After months in rehab, I learned to walk again, slowly and unsteadily. I saw myself reflected in the fear and worse the pity in the eyes of others. Glimpsing myself in the mirror, the old schoolyard insult "spazz" came to mind. My identity was shaken to the core. I no longer felt like the self-confident pretty girl who entered Wellesley College at seventeen and graduated from Columbia Law School at twenty-three. Things that had been easy, like dressing myself, became hard. A year and a half after the stroke, I returned to work as an attorney at a large City agency. A normal work day was exhausting for me but I threw myself into my job and performed well. Six months later, I married my boyfriend, Don, who had been steadfast and supportive throughout my ordeal. Soon, we decided to have a child. I knew taking care of a baby with one arm would be difficult but I planned to work and have a full time housekeeper. My physical therapist put me in touch with a generous colleague who allowed me to practice with her baby, a placid dumpling, but nothing could prepare me for the overwhelming task ahead. As first time parents, everything the baby did, every gesture, every gurgle, was amazing to us. Though scared I would drop her, I learned to hold and position Liat for nursing but I struggled to keep her still enough to get a diaper around her skinny little bottom. I dreaded the times when I was alone with her and might have to change her. I felt unworthy. After a few weeks, Don returned to work which meant I was alone until the babysitter arrived. When Liat was a month old, I resolved that I would not be defeated by a six pound person. I picked her up and looked her straight in the eye, "You are a baby" I said in a firm voice, "babies wear diapers." I continued the eye contact as I put her on the changing table and said, "Now hold still and let mommy change your diaper." She sensed my determination and let me change her. She was only a few months old when she learned to reach for my good arm. I returned to my job when Liat was three months old. I was not ready but I did not want to lose the job I had tried so hard to keep after the stroke. Without my salary, we couldn't afford the assistance I needed. Don was both a hard-working lawyer and an exceptionally devoted father who competently did everything from diapering to dressing and bathing. Still, there were often two or three hours from when I got home at five thirty or six and when he got home at eight or nine. The housekeeper went off duty when I walked in the door and though exhausted, I faced an active baby who needed me. One day, my housekeeper was bursting to tell me about the woman down the hall who had approached her and said, "Thank God that child has you. I thank God that I'm not like that if I was like that I wouldn't have children." My neighbor's cruel words haunted me as I wrestled with feelings of inadequacy. There were new challenges as classes and the playground loomed. I envied the easy way the other mothers in Park Slope toted their babies in backpacks or slings. We attached a bar between the two handles of Liat's stroller so that I could push with one hand. Liat enjoyed Mommy and Me classes, where mothers sat in a circle with their babies on their laps and sang songs with finger play. It was hard for me to sit on the floor and impossible for me to clap hands. I felt embarrassed as I played one handed patty cake with my daughter. As I sang along to "The wheels on the bus go round and round," I was mortified that my bus only had one wheel. It seemed as if the other mothers in the neighborhood looked away from me and I wondered if they shared the sentiments of my malicious neighbor. In retrospect, I realize that my close friends would have been supportive but I was too ashamed to share my self-doubt with them, so I kept up a façade. With maturity, I have learned that there is no point in trying to "pass" as normal. My disability cannot be concealed and I only make my life more difficult and lonely if I try to hide it. Toddlerhood hit like a storm. Liat had what her preschool teachers later tactfully termed a "forceful personality." She was a strong independent child who, by the time she was two, preferred walking to use of a stroller. She was vivacious and charming but could throw quite a tantrum when she felt the occasion warranted. I used to joke that I was looking for a military academy that would take two year olds. There should be a plaque at the grocery store in Park Slope Brooklyn on the corner of Seventh Avenue and Berkeley Street to commemorate the tantrum that almost did us both in. After work, on a cold winter evening, I brought Liat to the store with me to buy a few things for dinner. She demanded to buy ice cream to eat outside on the stoop like we did in summer. I refused. She planted herself in front of the store and began to scream and cry at top volume. Passersby looked at us as it got darker and colder and my child continued to roar. With one arm, I could not pick her up and carry her home. Had I tried to drag her, I might have injured her. I took a few steps away, hoping she would follow but she held her ground. I took a few more steps and looked back but she didn't budge. As night fell, there she was, a small figure in a pink snowsuit, unwilling to give an inch, howling at the top of her lungs. I turned around and we bought the ice cream, which I used as a lure to get her home, where I told her how angry I was. By the time she was three, Liat morphed into a personable child, easier to manage than a baby or toddler. She learned to let me rest if I was tired. A friend told me about her mother who had polio and how, as a child, my friend believed she had caused her mother's disability by spilling cream of wheat on her mother's leg. I resolved that my children would never feel responsible for my disability. When I took Liat to preschool, her classroom was up three hefty flights of stairs. "It's a race," I would say with a laugh, as I dragged myself up the steps. She would have a big grin on her face as she ran past me. At the end, I would shrug and say, "I don't know why she always wins." When I was pregnant with my second child, the nice preschool teachers came down for Liat while I sat contentedly in the lobby. I was more nervous during my second pregnancy because I knew all too well the challenges ahead of me. Liat, then four and a half, was excited and we talked to the baby in my belly whom we called "Miss Kick." One day Liat said to me, "You and Daddy will die someday, but Miss Kick is forever." In the delivery room, they put Miriam on my breast and she immediately began to nurse, then looked at me out of her big soulful brown eyes. My heart expanded to love another child. Miriam was a roly-poly baby with a contented disposition. I got a stroller with big wheels and a bar across the front and we glided smoothly through the winter months. Even diaper changing was relatively easy. Perhaps Liat was harder to manage because she sensed my anxiety. It wasn't long before Liat, a capable five year old, began to act as a helper. At times, it seemed as if she thought she was Miriam's mother or at least a co-parent, glowing with pride at every developmental step Miriam took. Perhaps this is why Miriam's "terrible twos" were almost nonexistent; Liat would not have tolerated any such rebellion. I sometimes wonder if Liat believed that I would not be able to take care of Miriam and felt the need to step into my role. After thirteen years, my marriage to Don, forged by the catastrophic events of our twenties, which included not only my stroke but the deaths of both of our fathers, had become a prison to me. When Liat was eleven and Miriam was six, I asked him for a divorce. It was a painful decision but I knew I could not continue to grow as a person if we stayed together. I will be forever grateful that my first husband worked with me to have a civilized divorce and that he continued to be an exceptionally loving, involved father. Don and I both tried to give the children the support they needed. Though the divorce was my idea, I was lonely and frightened, with a range of new responsibilities from paying bills to unclogging stuffed toilets. Nonetheless, these were fulfilling years for me as a mother. Once my children were school age, past physical dependency, I felt able to handle the emotional challenges of guiding them as they grew up. Maybe because I had difficulties as a "hands on" mother, I was able to let go and allow them to develop as individuals without trying to impose my stamp on them as so many mothers do. Both my daughters are today independent and self-confident young women. Yet I often wonder about the effect of my disability on their formative years. Did they feel they had to grow up quickly or take care of me? They are well-adjusted young women who say that they love me, yet still I worry that my limitations caused intangible psychic wounds. When these doubts trouble me, I pull out a faded copy of an essay Miriam wrote in seventh grade: "So when people see my mom's arm hanging, they might think it is a little strange. They might feel pity or they might feel nothing at all. Well, I'm used to her arm. It seems perfectly normal to me, and sometimes I even forget that she ever had a stroke. When I was a little girl, I once said to my mom that if she hadn't had the stroke she wouldn't be Mommy—she would be someone else." So, as much as this is the story of how I dealt with the obstacles posed by my disability, it is also the story of how my children adapted to me, how children make the best of the mother they have.
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