“Five more minutes, then we get out and change our clothes,” I repeat twice.

Shomik alternates between dog paddling and flipping himself in the water. I revel at his ease and imagine the sensation of respite, of weightlessness in a heavy world. Shumita, his sister, a first grader, plunges to collect plastic frogs and goldfish at the bottom of the pool.  “Mermaid treasures,” she yells jubilantly, “look Shomik, I got a red frog.”

Soaking in the warm, silky blue illuminated water feels luxurious. Outside, there is dirty slippery slush and a frigid wind that ices my hair. 

Twice a week I bring my children here, carefully timing our visit so that we arrive at the moment when the pool opens and we can be alone for a few minutes before other patrons arrive.  Then, after fifteen minutes, when they do, I spend my time nervously watching Shomik, searching for signs of over-stimulation that will require us to make a hasty exit. These days, life is a series of calculations about the limits of what is possible.  

“OK, it’s time to go.” I gently pull Shomik to lead him out of the pool. He screams and kicks me in the stomach. I try to grab him, and he hits me on the shoulder and pulls at my swimsuit straps, ripping one of them.  Several swimmers stop to watch. I get out of the pool and try again to instruct Shomik to get out and walk with me to the changing room. Finally, the lifeguard intervenes by blowing a whistle and sternly telling Shomik: “Out, the pool is now closed.”  

On the ride home, the windows fog up from the moisture on our towels and bodies. Shumita tearfully asks me what is wrong with her brother.     

I take a deep breath and prepare myself for The Talk. The Autism Talk. 

When I tell her that Shomik has something called autism she asks me if she will get it, too. 

“No, no,” I tell her, my heart breaking. “It’s not something that you catch, it’s not like a cold. You are not getting autism.”

I reassure. I explain, as best I can, the characteristics of autism. I tell her about the therapies that Shomik is receiving to help him. I tell her that Shomik loves us, although he can’t express himself like others do. 

By the time we get home, Shumita’s focus has shifted to her new set of Polly Pockets. Still, I know that nothing will ever be the same for her, just as it has never has been for me since that bright fall day eight years ago, when a cheery red-haired doctor told us Shomik was autistic.  

****

Marriage and motherhood were not optional life events for women when I grew up in   Bangladesh in the 1970s and 1980s. 

I am a rebellious teenager, angry and fearful of what I see around me, women being silenced and tethered by forces outside their control. I resolve to never marry and to never have children.

Never say never. By the 1990s, I am settled in the US, married to a man I met in college there. I start to think about having children. The life I have created, in rebellion from the home left behind, has given me much. But never a sense of belonging. Children, I imagine, will lead me back to the intimacy lost along the way.

Pleading the ticking of my biological clock, I convince my initially reluctant husband, a reclusive MIT-trained engineer, to go along with my plan to have children. 

A year later, we enter into the calendar-driven routines and progressively invasive medical excavations of infertility treatments. Over coffee with a friend, I declare myself “an IVF pro”— an expert recipient of in-vitro fertilization.Proficient at pulling up the skin on my thigh and stabbing it with hormone injections. Skilled at staying still when the ultrasound technician checks for eggs by pushing a scope with a lubricated condom into me. “You deserve a medal,” my friend jokes, “for all those hours with your feet up in stirrups and strangers poking at your crotch.” 

After four failed IVF cycles, the doctor gives us a pamphlet on adoption. She asks us to think about whether we want to undergo a final IVF cycle, this time using a newly developed procedure of intracytoplasmic sperm injection or ICSI, in which a single healthy sperm is injected directly into each mature egg.

On the way home, we maneuver through the chaos of the Longwood Medical area. In the car ahead of us, a red-faced man with a Red Sox cap sticks out his fingers and yells, “Crazy son of a bitch” to a left-turning car obstructing his way. 

 My long-suffering husband declares: “Enough of this crap, I’m not coming back here.”  

“One more IVF try,” I plead. “You heard what she said about ICSI.”

“Why can’t we just adopt? What is it that’s so great about giving birth? You’re crazy obsessed,” he spits out in anger.

Biological ties are not necessary for parenthood. And motherhood is not necessary for womanhood. These are my incontrovertible beliefs. And yet here I was, insisting on yet another soul sapping IVF cycle. My desires, always so intense, overwhelm logic.

In a compromise of sorts, we simultaneously prepare for the final IVF and contact an agency to initiate the extensive vetting process required for potential adoptive parents. The plan is to adopt from Bangladesh, the country of my birth. At first, my mother in Bangladesh is not happy with the idea. She has heard of people adopting babies and regretting it when the babies later turn out to have serious medical conditions and abnormalities. She comes around though, and dutifully begins to look for the best adoption options there.   

On the day of the expected phone call with the IVF results, I sit wrapped in a blanket in the old, drafty Somerville house where we live. Waiting.

 In the early afternoon, the clinic calls. I am getting my wish. I am pregnant.

****

By the time my son Shomik is one, he is toddling around the house, grabbing, banging and chewing whatever he can find. Whenever I see him I startle, caught by the ferocity of my love. An extraordinarily beautiful child, with big sparkling brown eyes, thick chestnut hair and a cheeky dimpled grin, Shomik quickly develops a loyal fan club of “coo-ers” and “ooh-ers” from afternoon walks in our thickly populated immigrant neighborhood.  

Magical moments aside, I am drowning. Shomik cries and cries in pitiful wailing tones much of the time, uncomforted when I hold him or feed him at my breast, refusing to sleep for more than two hours at a time.  Sleep deprived, my husband and I walk around like zombies and snap at each other constantly. 

One night I come down to the living room to find my husband teetering over with sleep as he pushes Shomik in a baby swing. I tell him to go up to bed and mutter to myself: “I wonder if parenting is this hard for everyone. Are we doing something wrong?” 

“Zero population growth,” my husband mumbles. “If raising children was this hard for everyone, why aren’t we at zero or minus zero population growth?”

Family and friends tell us to hang on. He’s a colicky baby. He’s teething. Just hang on, it will pass. 

It doesn’t.

****

Worried that he is not yet talking, we take two-year old Shomik for an evaluation at Boston Children’s Hospital. Our little guy is in a good mood. Dressed in a tiny denim jacket, he beams at passers-by and rushes into the elevator to push the floor buttons.  

A nurse takes Shomik by the hand and leads him into a carpeted space with toys and a small table. We are directed into a room next door where we can observe Shomik interacting with the medical team through a two-way mirror. We watch through the window as one evaluator silently blows large soap bubbles towards Shomik while another sits at the table with a notepad to record his responses. Mechanically and in silence, the evaluators carry out their test protocols. Occasionally, I see them  smile and look meaningfully at each other with a hint of flirtation, creating their own private bubble of intimacy within a dispassionate space.

After the tests conclude, we wait in a small office. A young ginger-haired man comes in with a file.  He introduces himself as the lead doctor on the evaluation team, and he cheerfully declares: “The diagnostic tests indicate autism, or autistic spectrum disorder.”

Shomik cries at a high pitch as I stare at the doctor, stunned. I take Shomik in my arms and my husband asks questions about prognosis and treatment. The doctor is in a rush, anxious perhaps to get away from Shomik’s ear-piercing shrieks. “Good luck,” he says, and gives us pamphlets on autism spectrum disorder and advises us to contact Early Intervention for services.  

We drive home from the hospital in silence. Shomik sips a juice box in his car seat and then starts to wail. I sing to him—gentle, melodic Bangla songs from my childhood.

A letter is waiting for me at home. I have been granted the academic golden egg—tenure and promotion to Associate Professor at the university where I teach. The majority of my department voted against me, but their decision was overturned at higher levels. 

A colleague and friend at the university who hears the news calls to exalt in the defeat of those who voted against me. “You did it! You got those fucking bastards! I knew it, if anyone could show them up, it was you! Let’s hear it for the defeat of the dark side.” 

Refusing phone calls and avoiding emails, wanting no part of the celebratory messages coming my way, I hole myself up in the house for days. I do not feel powerful.

For the past twelve years I have devoted all my energies towards getting a secure academic position. Now it is minutiae, a puny blip of nothingness when set against a beautiful little boy who has been dealt a terrible set of cards by the unseen forces of the world.  

Distraught, I wobble between bone-chilling fear of what lies ahead for Shomik and rage at the cruel unfairness of fate. 

And guilt—pounding, unrelenting guilt. 

Was it the hair dye I used during pregnancy?

Or the time when I left him at just a few months old to go and give a talk in Texas?

Or the times I had exhaustedly plopped him in front of the TV to watch Teletubbies as a distraction?

And most of all, was it the intensity of my desires, my stubborn refusal to just let things be, to accept a childless future? 

My life has been a series of defiant pursuits. I left Bangladesh against family wishes and settled and married in America. I pursued an academic career despite many barriers and waited to have children until I was older and more likely to face infertility issues. I had insisted on that final IVF cycle.  

****

Days are tightly scheduled. Early Intervention therapists visit the house, playing with Shomik and instructing us how to develop his skills. Twice a week, I drive Shomik to a speech therapy group for toddlers at Emerson College. After observing him for a few weeks, the lead clinician there, a well-known veteran in the field, tells me that Shomik’s problems are severe and are most likely not going to resolve over time. 

I refuse to believe her.

In the evenings, when we are home alone, I shut out the world and sink myself into the Shomik universe. I float contentedly in a bubble of visceral peace. A bubble where nothing else matters, a place away from the unrelenting noise of doctors, therapists and well-meaning relatives and friends who offer advice. I coax him to play with toys, watching him spin himself into exhaustion on the living room carpet. I sing nursery rhymes and rock him to calm a tantrum.  There are the moments etched into my soul, when he runs to me and tumbles into my lap, when he smiles with happiness at his first taste of ice-cream, when he laughs as we play peek-a-boo.  

****

I am clearing out boxes in the basement with Shumita who is back at home from college. Grumbling initially at the task, she eventually gets into the groove and helps to sort items into keep and discard piles. We pull out musty-smelling sweaters and scarves and ask if they bring us joy á la Marie Kondo. 

Shumita finds a letter from the US State Department, the approval of our petition to adopt a child from Bangladesh. The letter is now, like Shumita, over eighteen years old. I tell her about how we had, at one time, wanted to adopt from Bangladesh but ultimately decided it was not an additional responsibility we could handle.

Unexpectedly, I tear up.

Shumita put her arms around me like she always does when she sees me upset. She has comforted me over the years when I grieve about how my now-adult son cannot seem to make peace with the world. She understands what it is like to live with Shomik’s odd ritualistic behaviors, resistance to new things, his unpredictable screams and terrifying aggressions; what it is like to love Shomik and to be helpless to help him.   

“Are you sad,” she asks, “because you ended up not adopting? I mean, do you regret it?”  

I shake my head, unable to clearly explain the tears. I want to tell her about the interweaving of gain and loss and the unexpected turns of a planned life. About how wishes do come true, although they also take you to unanticipated places. And I want to tell her about the moments of love and joy that sear into your heart and soul and protect you forever, like the ends of my mother’s sari wrapping around me as a child.

---

Nazli Kibria is an author and educator. She is a Professor at Sociology at Boston University where she teaches courses on families and migration. Her op-eds and commentaries have appeared in the Boston Globe Magazine, Cognoscenti-WBUR, The Hechinger Report, Inside Higher Education, and other outlets.  Nazli grew up in Bangladesh and now lives in the Boston area.  She and her husband are advocates for the care and support of their severely autistic son and others like them.