She who does it for herself
As the mother to a daughter with special needs who has recently entered the gates of puberty, I doubly-understand how important it is to be able to both see and create yourself in the present and the future. Before my daughter’s first birthday, her father and I noticed that she had begun holding her left arm at a right angle. After a pediatrician’s visit, a consultation with a neurologist and orthopedist, and an MRI, we were given a diagnosis — hemiplegia — a non-debilitating neurological disorder that would eventually affect her speech, mobility, and cognitive abilities. She’s different. The arm and leg braces she sometimes wears, along with her stilted speech pattern marks her as foreign amongst her friends and playmates. Unlike me, a shy nerdy girl at this age, she’s a social butterfly whose unique brain allows her to process music and abstract math in ways that I never could.
Instead of limiting herself or giving in to alienation because of her difference, my daughter has embraced her alien-ness, carving out a lovely life for herself, while constructing a vivid future. I’d like to think that it was my introduction of one of my childhood loves, Wonder Woman, to her at an early age; her father’s creation of a vast comic universe whose heroes span race, gender, and sexual orientation; or her laying in bed with my mother at 2 years old watching the original Star Trek series, that has helped my daughter create this space for herself, a place where Black women and girls can easily recognize themselves regardless of how foreign they may seem—even if others cannot.
“You might as well get her a wheelchair, because she’s never gonna walk!”
“What did you just say?”
“She’s never going to walk!”
I don’t exactly remember what happened right after that, but I do know that the physical therapist who’d been working with my daughter for the last 8 months was now on the stoop of our brownstone apartment building picking up the scattered insides of her briefcase, which had somehow been thrown from my second-floor window. I immediately called our service provider, explained to them what happened, and was guaranteed another therapist within a week. Two days later, I received a call from Mr. Muhammad apologizing to me for the prior therapist’s behavior and explaining to me that he would be taking over her duties. He sounded warm, yet serious, and I was eager to meet him.
When the doorbell chimed, I bounded down the stairs and was greeted by a bright, smiling face on the other side of the leaded glass door. It was Mr. Muhammad, average height, sturdy build, smiling eyes and cheerful face–he looked like he sounded on the phone. He was also 15 minutes early for his 30 minute session with my daughter. When she saw us re-enter the apartment, Zenzele giggled and bounced up and down in her saucer, or as I liked to call it, “the noisy bouncy thing from hell.” Mr. Muhammed let me know that he was early because he had to make salat, the five times daily Muslim prayer and asked if that was ok with me. It was fine, and after I showed him which direction was east, he pulled out a small, colorful prayer rug, removed his sneakers, and prayed. A sense of peace came over the apartment as he prayed for those few moments. Even Zenzele didn’t squeeze, shake, or rattle anything in her saucer; she just watched and smiled. As soon as he finished, I offered him a glass of water. He accepted, then we moved to the couch where he had some questions about Zenzele.
“Has she ever crawled?”
“Nope, she scoots around on her booty.”
“Does she try to walk?”
“Yes, holding on to the couch, coffee table, or the knees of anyone sitting, she tries to walk.”
“That’s good to hear! How does she sleep?”
“She’s been a great sleeper since I brought her home. The only time she’s ever kept me up is when she’s teething.”
“She’s a year old now, right?”
“She’s actually 13 months.”
Zenzele knew that we were talking about her. With each question, she inched her saucer closer to me and Mr. Muhammad as if to show the both of us that she could walk. When she reached my side, I pulled her out. She leaned up against the couch, arms outstretched, tapping her right foot, as if claiming her territory. Mr. Muhammad smiled, waved to Zenzele then asked me how to pronounce her name.
“Is it Zen-za-lee?”
“No, Zen-zay-lay, but I have heard slightly different pronunciations.”
“Ahhh, where did you get such a beautiful name?”
“Thanks, it’s from southern Africa. It’s part of the Xhosa language where they click their tongues and their teeth. It’s also the title of a wonderful book.”
“If you don’t mind, what is the meaning?”
“It means: she who does it for herself.”
“That’s perfect. She will do it all. I can see this in her eyes.”
Upon hearing Mr. Muhammad compliment her, Zenzele reached out to him, grabbed his knee, and walked toward him, steadying herself with every step. She looked up at him, smiled, then walked back towards me, this time holding on to the couch.
“She will walk fully on her own. Believe it. This is my specialty.”
As a mother, I have mentally debated my choices surrounding my daughter. After her initial diagnosis, I tried to recount everything that occurred from the time I found out I was pregnant, to her birth trying to figure out what I did wrong, particularly in the early stages.
August 13, 2003 saw a massive blackout in the northeast of the United States, including New York. I worked in lower Manhattan and had been married for less than a month. We evacuated our offices and after walking from the lower tip of Manhattan and crossing the Brooklyn Bridge, I was exhausted. I did not think that I would be able to make it the rest of the way home. I continued to make my way into downtown Brooklyn to the end of the B45 bus line which runs near my apartment. I was hopeful that a bus would show up and I could grab a seat. My decision paid off. An empty bus pulled up just as I arrived. What was normally a 30 minute ride became a two-hour adventure. Not only was the bus full and leaning to one side, but because of the blackout, there were no street lights and the driver had to proceed very cautiously.
Finally close to home, I hopped off and walked the remaining two blocks. When I arrived, my downstairs neighbors were drinking wine on the stoop. They offered some, but I declined, needing to get to my land line and finally make contact with family. As I put my key in my apartment door, my phone rang. It was my mom and I let her know that I was fine, but wasn’t sure where my husband was yet. Still, I wasn’t feeling well, but decided to join my neighbors on the stoop with a glass of water and wait. Within 30 minutes, he arrived.
“You made it!”
“I walked down to your job, but security showed me that you had left. I love how your name was at the top of the list.”
“You know I was out. But I can’t believe that you walked over 80 blocks south, then over the bridge home!”
“What else was I supposed to do?”
My husband headed in to call his mother, then mine. After a few minutes, I followed him inside.
“My feet swole up on the walk over the bridge.”
“Yeah, they look like the Pillsbury biscuits you pop out of the can.”
“Really? Wow! How do you feel?”
“Sore and congested.”
“Sore and congested.”
“I get that. Where did the congested come from?”
“I have no clue. I just feel achy, gross and weird.”
“Hmmmm…get some rest.”
In that moment, that’s when I knew I was pregnant. I had not missed a period, nor did I have any other of the traditional symptoms like nausea. But somehow, I knew. The next morning, we took a walk to the neighborhood Rite Aid, purchased an early pregnancy test, then returned home. The result, positive. I never wanted to have children and could never picture myself changing diapers, cleaning up vomit, or doing anything associated with being a mother, but in that instance, it all changed. I looked forward to poop, puke, teething—all of that.
Now that Zenzele is 12, I could not imagine not being a mother, her mother. But could that day, that incident have contributed to her diagnosis? Within a week I was at the OB/GYN receiving confirmation of my pregnancy. I immediately began taking prenatal vitamins, upping my water intake, and following all of the pregnancy guidelines she doled out. I attended all of my prenatal visits, took all the classes, and pretty much enjoyed my pregnancy—even the discomfort of the first trimester when my body seemed to be staging a revolution. However, I continued to question my choices, until I didn’t. What triggered the change was the remembrance of a promise I had made to my yet unborn child. Somewhere within the middle of my 24 hour labor and delivery, I remembered rubbing my massive belly to soothe her and saying “I love you and I will always do what I need to make sure that you have a happy, joyful life.” In the midst of what could have been seen as devastating, I had hope. I saw her diagnosis as something to be managed and immediately jumped into action sourcing assistance from who would become her medical team.
Initially after receiving her diagnosis, I went to Google and began researching. It was probably the worst thing I could have done. The images and reports I read shocked and frightened me. Luckily, my mother pulled me back from the depths and gave me the strength to carry on, reminding me that I knew that hemiplegia was not debilitating, but I also knew that I would only know the full extent as she continued to develop. Though she was delayed, Mr. Muhammad’s assertion proved true and my daughter walked fully by herself at two and a half, has been taking ballet and modern dance since she was four, and has performed in large-scale recitals across the city. With hemiplegia, which occurs in my daughter’s right frontal lobe, her memory has been affected. It often takes simple concepts longer to be absorbed. She would forget what number came next while counting, miss several letters while reciting the alphabet and become frustrated. Luckily I noticed how much she loves music, so much so that she would remember the chorus of a new song after only hearing it a couple of times. Because of this, I began utilizing instrumental music, particularly the music of the 70s, to assist her in memorizing. It worked and continues to do so.
My daughter’s medical history is daunting, and includes Botox injections in both her left leg and arm in order to stretch the muscles and give her better range of motion, several MRI’s, a seizure disorder that presented itself when she was six causing nearly a week-long stay in pediatric intensive care where she was sedated and intubated, various arm and leg braces, and extensive months-long neurological evaluations. It would be understandable if this took an emotional toll on me, but somehow it hasn’t. Throughout this entire time, my optimism has not only sustained me, but my family. My daughter actually enjoys going to her various doctors, because I never speak about it in negative terms. She has always been allowed to pick out the colors for her braces which always wind up being pink or purple with butterflies, rainbows, and the like.
Although she is in a small class and receives specialized attention, it became clear that traditional educational methodologies do not work with her. Luckily, and with hard work, we’ve been able to find an educational environment where her strengths are taught to and her weaknesses worked on. We often speak of intelligence or genius in terms of high IQ, however, when it comes to children on the opposite end of that spectrum, those children like my daughter who have neurological and/or cognitive issues, are lumped together in undifferentiated educational environments where their particular talents go unnoticed. Despite this, educators and physicians have been able to recognize and appreciate my daughter’s giftedness outside of IQ. Because of this, I have been able to to create and support spaces outside of school where my daughter’s genius is supported and sustained. From dance, art, music, and language classes, to exploring the myriad cultures that inhabit New York City, I enable my daughter to pursue her very own brand of excellence, which reinforces the positivity she feels about herself and her life.
As a young Black girl, my daughter is already seen as already seen as an other. Add to that, her disabilities and we know that there will be challenges to her personhood. She knows that she is different, but that also everyone is different in their own way. We have never shielded her from the world, preferring to make sure that she participates fully in life, and that along with the knowledge that she has parents, family, and an extended family who love her, allows her to stand in her joy on a daily basis. Even as a moody tween, there is not a day that goes by where she is not joyful and in part, this may be due to her hemiplegia and where her synapses do and do not connect. Yes, she experiences and processes anger, hurt, and fear, but we have also have a parenting philosophy and style that centers honest, open communication, self-love, agency, and self-possession. It has not always easy, but in everything we do, love is present and we allow that to be our guide.
Aiesha Turman an Interdisciplinary PhD candidate at Union Institute and University where her research interests include cultural production as a way to mediate inter-generational trauma and historical grief among African Diasporan women; founder of Super Hussy Media (SHM) producer/director of The Black Girl Project documentary, and Executive Director of The Black Girl Project organization (BGP). Her major influences (in no particular order): motherhood, her queer Black mother, Gullah/Geechee culture via her maternal grandparents, Black women’s survival narratives, and the film The Wiz. Learn more at aieshaturman.com.