The Love Chromosome

I woke up one morning an hour before my alarm was supposed to go off to my phone ringing. An unknown number showed on the screen, so I threw it on the floor, tucked the covers over my head, and drifted back to sleep. Only a few minutes later, the number tried again. With an irritated grumble, I rolled out of bed like a whale out of water and curled up face first on the floor before answering.

"Hello?" My voice caught in my throat and sputtered like a seventy year old smoker. I swallowed and rubbed my neck, trying to wake up my vocal cords.

"Hi, am I speaking to Bethany?" it was Sandra, my midwife. I wondered why on earth she would be calling so early on a Saturday morning.

"Hey, yeah its me. Everything okay?" There was a pause on the other line. A really long pause. The silence shook my nerve endings awake and ate a hole in the pit of my stomach. It was Sandra's turn to swallow. A forced swallow, the loud, sinking sound of someone dropping a boulder into a lake. Finally she spoke. Her voice came out soft and shaky.

"Well, the test results for your genetic screening came back. I normally don't make phone calls on the weekend, but I wanted to be the one to tell you." Another pause. My heart felt like it would catapult out of my chest and my palms were growing warm and clammy. I felt like I should say something to break the silence, but no words came. I was getting lost in a thousand different possible scenarios when Sandra's voice punctured my thoughts with the truth. The very unexpected truth.

"It could be nothing, but there's a one in twenty chance the baby you're carrying may have trisomy 21. Do you know what that is?"

Trisomy 21. An assignment from high school I had forgotten about rose up behind my closed eyelids. It was a paper I had written about Down syndrome after watching a documentary that followed the lives of two adults thriving with an extra chromosome. I had found the documentary by chance, a last minute decision as my paper was already late. But was it just chance? Now I'm not so sure.

Five months after the phone call from Sandy, I hunched over my newborn daughter in a darkened booth of the Neonatal Intensive Care Unit. Her tiny, five pound body was delicately wrapped in a swaddle and tubes connected her to a machine that monitored her heartbeats and oxygen level. This was my first chance to see her since they pulled her premature body from my chest in the warm afterglow of birth and wheeled her away to the NICU. I was hypnotized by her fragile chest fluttering up and down, the lovely symmetry of her face, her tiny eyes hidden behind closed lids. I didn't want to miss the moment she opened her eyelids, tested the water, took her first glimpse of this wild world she was now apart of. I didn't want to miss a sigh or a grunt or a snore or a twitch. I was drawn to her eyes. Something was unique about them, the folds of each eyelid arching together like the eyes of a sea-turtle. It was beautiful, something I'd never seen on anyone. In the morning, the doctor would tell me why.

He entered my room with a whole team of people - a physical therapist, an occupational therapist, two nurses, and a social worker. I had met the social worker earlier that morning, her eyes so kind and gentle then, now swimming with concern. She came and stood behind me, placed her palm gently on my shoulder, and closed her eyes as Dr. Naz cleared his throat. A haze of tension hung between us as he diagnosed my daughter with down syndrome.

I gazed over her day old face, felt her chest rise and fall against mine. The doctor's voice seemed far away as he began reading off a list of things she may never do. She may never walk. She may never talk. She may never leave home. She may never drive or have a job or get married. Her life will be a series of doctor appointments and health concerns, and she is likely to die at a younger age than most people. The room suddenly felt smaller and the social worker's hand felt like a brick on my shoulder.

"I'm so sorry," she whispered.

For what? I wanted to scream. Why are you sorry? Why are you all acting like my daughter has cancer? Get out! Get out!

When they finally left with their sad, sympathetic smiles, a wave bubbled up inside my chest and turned into a raging sea. I clung to my daughter's fragile little body as I choked over sob after sob. I wasn't crying because she had down syndrome. I was crying because somehow my love for her had tripled. I could feel it inhabiting every cell in my body, consuming my heart and nearly suffocating my lungs. But something else was happening too. In the depths of my being, a promise was being born, an oath to stand like a mother bear between my daughter and those who would attempt to define her by the extra chromosome that made her unique. Little did I know, there would come a time when that bear would bellow in my own face, threatening me to take a step back and see her down syndrome as the special gift it was rather than a disability.

Eighteen months from the day she was born, we sat in the doctor's office, watching a nurse read through the development survey I had filled out with furrowed eyebrows. A heavy silence lingered between us, lifted momentarily by the occasional question.

"So, she doesn't walk yet?"

"No, but she takes several steps with the support of my hands."

"And she still doesn't speak? Not even a few words?"

"Well I wouldn't say that. You should see her in front of a mirror, she has quite the conversation with her reflection, it's the cutest thing!"

The nurse didn't respond, not even with a smile. She wrote something in her notes and left the room, pausing briefly to tell me the doctor would be in shortly.

Doctor Carrol arrived only a few minutes later. She greeted me kindly, gave Olivia a gentle pat on the head, and then fell quiet as she read the nurse's notes. Her smile faded and her brows furrowed. She looked at me, then back at the screen.

"Has Olivia been attending physical therapy?"

A lump formed in my throat.

"She was, but she had RSV for a couple weeks and I haven't had a chance to reschedule."

Dr. Carrol squinted her eyes.

"Bethany, I'd like to show you something. Do you see this here?"

She used her pen to point to a graph on her computer screen with two different lines. They both started at the same point but one flowed through the graph slightly above the other.

"The top line shows the average development of a toddler. The bottom line is how Olivia seems to be developing. As you can see, she has fallen behind what is expected of an average 18 month old. Now, this is pretty typical of a child with down syndrome so I don't want to worry you. But you need to know that without weekly therapy, Olivia will likely never catch up to her peers. Also, according to the development survey, it is highly likely that your daughter is autistic. We cannot diagnose this until she is older, but I would like you to be aware of this possibility."

I felt sick to my stomach. I couldn't really understand what was happening inside me, but as Dr. Carrol examined Olivia, the feeling began to intensify.

By the time we got home, I thought I was going to throw up. Those words kept repeating in my head like a broken record. Autistic. Behind. Never. I suddenly remembered that day back in the NICU when I found out Olivia had down syndrome. I remembered the words that had made me so sick at the time. Never walk, never talk, never drive, never leave home.

What had I done wrong? I felt like I had missed something, like I was failing my daughter. Suddenly, I felt a small hand gently touch my arm. I looked up and found two dazzling blue eyes glowing with tender reassurance peering back at me. Olivia held my gaze with peaceful sincerity for a moment, then broke out into a big goofy smile. I wiped a tear from my eye, and as soon as I returned the smile, she plopped to the ground, and crawled over to her favorite ball, babbling joyously as she went.

Olivia had always been able to sense what I was feeling. In some of my darkest moments, she would rest her head in my lap, pat my arm, or try to kiss my forehead, which meant giving my face a sloppy, wet lick. No matter what worry or frustration occupied my mind, she always had a way of lifting my spirits. She also had the ability to lift the spirits of every person she encountered. Strangers in the grocery store would stop what they were doing to see her smile, waiters at my favorite restaurants would linger at my table to listen to her laugh, people walking the trails we walked would pause to let her wrap her hand around their fingers. She brought light to every corner of the world she occupied. Perhaps she couldn't walk yet or tell me what color her favorite toy was, but she was gifted. She could love harder than any toddler I'd ever met, and I wouldn't change that for anything, not even for the chance to have her labeled as an average toddler on the development chart.

Did it really matter if she walked a different path than other toddlers, if doctors chose to label her autistic because she spent her time crawling around, examining every detail of her environment with great care and interest rather than pushing buttons on a plastic toy or snuggling a baby doll? The momma bear was waking up inside me and begging me to take a step back. Away from the labels, away from the graphs and surveys, away from the haunting sound of the word never. And as I did, I was overwhelmed by this acknowledgement of how blessed I was to have a daughter that brought so much life to the world. I let the labels and the fear of what might never happen melt from my chest and vaporize into thin air. I promised once more to nurture the joy that comes with having an extra chromosome rather than the fear of the labels that came with it.

Olivia is 20 months old now. This beautiful sunny morning, she takes her first four steps. Those four become five, then ten, and every time she falls, she rises to her feet once more, chanting excitedly, "do it, do it, do it."

Yes my love, you CAN do it.

You can do anything your joyous heart desires.