Not One of Those Mothers

Not One of Those Mothers

By Kate Trump O’Connor

Not Your Mother WI08The late afternoon sun spills across our table in the corner of the café, near the window. I’m going to confess something very important to you, so ignore the hovering waiter and lean in close.

I never thought I could do this. I never wanted to do this. I never, ever would have chosen this for me, for my one and only life, for my son’s one and only life. This? Mentally and physically handicapped? No way.

I lean over my coffee to emphasize my words as you clutch your cup, uncertain. I confess, before Thomas, my world was largely untouched by disability. Shamefully, I went on with my life, unaffected and unconcerned, and I never had to face my own ignorance. It was easy enough to turn my head the other way.

Then, one beautiful June day, I was forced to face it—and the face it wore looked just like his older brother’s, with smooth round cheeks, a tiny nose, and the deepest brown eyes.

*   *   *

Thomas arrived three weeks early on a sunny Friday in June. After an uneventful pregnancy, my early labor was a surprise, though not worrisome. We made it to the hospital with just enough time to drug me up, something for which in hindsight I am extremely grateful. Not for the physical pain of delivery—as a second-born, his birth was quick and almost too easy—but for the heart-wrenching pain and grief that came after.

Dr. T. is a calm and gentle man. He broke my water, saw meconium, and calmly explained that he would keep the baby from crying until he had suctioned our little one carefully and thoroughly. So when they rushed our new son (another boy!) across the room and huddled around him, we weren’t alarmed. Dr. T. betrayed nothing while, as I now know, he and the nurses worked to resuscitate my baby. I was too giddy to notice as ten, then fifteen minutes passed.

“He’s having a little trouble breathing, so we’re sending him to the special care nursery,” my doctor explained. I remember thinking that it was okay, that it was not a big deal, that these things happen all the time.

Then they brought Thomas to me for the first time, pink, swaddled, and crying. As I took him into my arms, he looked up at me and stopped crying. His dark, solemn eyes stared into mine, and we knew each other without question.

I had no idea, as I handed him back to the nurse for his trip to the special care nursery, that our brief minute together would have to sustain me for the unbearable weeks to come.

Maybe we should have been more concerned in those first minutes and hours. Maybe instead of making giddy phone calls and rejoicing in our new son’s birth, we should have been preparing ourselves. There were warning signs. His initial Apgar score was five. When I finally held him and said, “He looks just like his big brother,” my OB replied, “He does?” Only much later did I realize why he sounded a little surprised.

Hours passed. I was moved to my postpartum room, and still we waited to see him again.

*   *   *

I have to stop here for a minute. If I plunge ahead into the next chapter, you’ll pick up your coffee cup and hold it forgotten for long minutes, staring at me wide-eyed. It’s vital that I get this right so that you don’t do what we all want instinctively to do—put distance between my life and yours.

It’s not personal, I know. But as soon as I say anything, your imagination will stand at the mouth of that dark tunnel, the one my husband and I found ourselves hurtling down when Thomas came into the world. You’ll shake your head to clear the vertigo. Not your path in life. More power to me, but you could not imagine it.

I understand. Before Thomas, given the choice, I’d be leaning over your shoulder looking at some other mother with that same sense of sympathy and awe. “How do you do it? You’re amazing,” we’d echo in unison to that other mother who, but for the grace of God, the universe, Mother Nature, and random chance, could be us.

That other mother (who is not me, if only for one minute) sits a little apart. When she talks about her kid, there’s a certain look in her eyes, like she’s seeing something we don’t. She deals with so much, this special mother of a special child. She speaks a foreign language—of sats and meds, of OT and ST, of IEP and inclusion— that you don’t want to understand. It’s so hard and she’s such an amazing woman to deal with it all, and you know that you wouldn’t have the strength to do it.

You mean this as a compliment, this admission of weakness.

It’s not. It’s the verbal equivalent of throwing salt over your left shoulder. It’s a fervent and silent plea, Don’t pick me. I’m not one of those mothers. I’m not strong enough, I don’t have enough faith, my heart isn’t unselfishand radiantly kind. And what—oh, surely, I am the shallowest mother on earth, another reason I can’t be chosen—what will he look like? And will I be able to love him, truly love him?

You wish desperately to believe what we all say: Special mothers are chosen. God doesn’t give us more than we can handle. Even more, we seek to find ourselves lacking, wishing for the first time to come up short and prove ourselves unworthy. If God or the universe doesn’t give us more than we can handle, and I know I couldn’t handle this, then I’m safe.

I know all of this makes you uncomfortable: my child, the future you can’t or couldn’t have imagined for yourself. For your child. Two years ago if I had been told that at two days old, instead of being discharged home with me, my baby would be put on a lung bypass machine that circulated the blood out of and back into his body; that at two and a half months he would have open heart surgery; that at fourteen weeks old he would come home from the hospital, alive but fragile, with a feeding tube and an oxygen tank; that instead of holding him warm to my breast, the tiny infant I’d felt kick and roll inside of me would be nourished by the milk I pumped five times a day for months—if you had told me all of this, I would have said, Nope, can’t do it, find someone else please.

And if I had been told that my newborn son would be disabled. And if we’d known the first gift we would receive after his birth would come from the chief geneticist at the big-shot hospital, a book titled Babies with Down Syndrome? Certainly I would have paled and looked around. Me? I can’t be the mother you intend for this child. Surely you mean someone else—someone who hears all this and doesn’t turn away in fear. A woman who instead hauls out her breast pump, grabs a medical dictionary, calls the local early intervention program, and gets down to the business of mothering her special child.

Call the waiter over, I think you need a refill. I can see you’re still skeptical. You won’t let go of your certainty that somehow I am a different breed of mother. I know you’re wondering, so I will tell you. No, I didn’t get all the prenatal tests. No, we didn’t want to know. Yes, we chose the uncertainty and accepted the risk. We never really imagined our baby would be born anything but healthy and perfect.

Now, after all I’ve told you, I must concede: I am a different kind of mother. (“Ha!” you cry. “I knew it all along!”)

But let me explain.

Thomas is twenty months old now. At night I sit by his crib and watch him sleep, mouth open, the sleeve of PJs exposing too much wrist because he’s growing so fast. His pudgy hand rests on his baby-blue sheet, the one with the owls. His dark blond hair, exactly like his brother’s, curls in a cowlick over his smooth forehead. His plumpcheeks are covered with white medical tape, which holds the oxygen tube tight in his nose. I glance at the display on his oxygen saturation monitor, the numbers holding steady at 100 where they should be, the bar of green LEDs rising and falling and rising again with his every heart beat. Nearby, my husband stirs in his sleep. The baby is still in our room so we can respond when his alarm goes off, signaling a drop in his oxygen levels. It’s easier than stumbling down the long hall. I should be sleeping, too. Yet I sit and watch Thomas sleep. Because I can. I know when he wakes in themorning, he’ll pull off the oxygen tube (he needs it only when he’s sleeping) and greet me with a loud good-morning babble. His big brother will come in, asking to go downstairs and watch cartoons. “Bring Tommy down, too,” he’ll say, because to my amazement, after all we have been through, they are as close as brothers can be.

If you had told me two years ago that this child would come into my life, I would have wished I could be the mother you thought I was, but I’d have known deep down, and most ashamedly, I was not.

And if you had told me about the woman and her eight-year-old daughter who rushed up to us in the grocery store and said, “Is this your baby? He’s so cute,” I would have looked at you sideways.

And if you had told me that I would sit here today by Thomas’s crib and say that on most days I don’t think much about his having Down syndrome, I would have said you had a fantastic imagination.

But the truth is, whoever or whatever force is in charge of baby placement didn’t see anything in me that is not in every one of us—the capacity to love our children beyond measure and reason, beyond diagnosis and fear, beyond uncertainty and self. I wasn’t picked to be Thomas’s mom because I am special; I was made special because I am his mom. When I took him in my arms for the first time and gazed into his eyes, I saw only my beautiful, perfect son.

So I settle back in my chair here on this side of the café table. It may be hard and unyielding some days, it may wobble a bit when I lean, but it is my seat at the table. I don’t want to trade places. Because what you can’t see from your seat on the other side is the breathtaking view I have gazing out over your shoulder.

Author’s Note: Since Thomas’s birth, I have struggled with the moral and ethical issues surrounding the increasingly early prenatal diagnosis of Down syndrome. I do not want to impose on the personal choices of others, and yet I do not want fear—the fear of differences and the fear of our own inadequacy—to make life and death decisions for us. We are capable of much more than we give ourselves credit for. That’s something Thomas, with his determination and persistence, shows me every day.

Kate Trump O’Connor is a writer, photographer, and artist who lives outside of Boston with her husband, two sons, and twin daughters. Her website is

Brain, Child (Winter 2008)

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Any Woman’s War

Any Woman’s War

By Sarah Konstantonis

Every Woman's War ArtNot much longer now, I thought while tucking my legs underneath me, perched on the edge of hospital bed.  Any moment and the doctor will come through the door and confirm our discharge, and I take a final moment to revisit the familiar decor, the blue painted walls and stick on cartoon characters surrounding me. I had remained at my infant daughters side for the past 48 hours, unable to hold her tiny body while she sunbathed under lights to decrease her billirubin levels, cruel looking patches protecting her delicate eyes. Now the jaundice has sufficiently decreased and I could bring Analise home where we will join my husband and small children and finally settle into being a family of six. Analise is ten days old and sleeping in the plastic bassinet next to the bed. I look down at her face, pale, smooth and slightly translucent, a roadmap of blue veins visible beneath. She has a mop of feathery auburn hair and I hope that her eyes fluttering beneath thin lids will stay blue, unlike her brothers and sister. I feel so blessed, two daughters and two sons, a loving husband, a life I had always wanted.

It’s early spring, and the dreary view outside the hospital window is of a grey sky with a watery sun over a rooftop parking lot. I was sorry to have only sandals on my feet to carry Analise out to the car, it looks so cold out there, and I shove my icy feet under the faded hospital blanket. Tired of the stack of magazines by the bed, of flipping through the channels on the miniscule pay-as-you-stay TV mounted in the corner, I let out a sigh. Let’s just get on with this, I thought, staring at the door, willing the doctor to our room. I want to go home.

Soon there was a knock and our doctor stepped in with a small smile. She was my age, mid thirties and dressed professionally, with long dark hair swept away from her face. We had met two days ago but already I felt very much at ease with her. I think that under different circumstances that we could have been friends.

“We’re all set.” I say after greeting her, eagerly putting on my shoes. I lift the baby to my chest, wearing her new pink sleeper with the puffy white lambs. After two sons her entire wardrobe was varying shades of pink, and I relished it. “I guess that we’ll see you tomorrow?” I ask, still sitting back on the bed.

The nurse had earlier explained that for the next few days we would have to return Analise to the hospital every morning until her billiruben levels were below an appropriate level. What a pain, I thought mildly. But, if it means that she remains healthy, it’s a small price to pay. We can get back to our schedules and rhythms, albeit with a newborn thrown in the mix. I wonder, absentmindedly, if I should pick up a pizza for dinner on the way to the house.

“Sarah,” the doctor begins softly, “there is something else that I want to talk to you about.” Something in her tone caused my heart to beat faster. She took several steps towards the partially open door leading to the nursing station and closed it. As I watched her it’s as if time slowed down while the air in the room billowed out just before it shut.

“Does Analise look like any of your other children?” she asked.

I found myself suddenly defenceless against something that I had pushed out of my mind over and over since her birth. Something that none of the nurses had noticed, that my midwives, family and neighbours hadn’t commented on. Something that I had almost convinced myself wasn’t actually there.

The truth was that Analise did not resemble any of us the instant she came into this world, three weeks early and within an hour. The midwife had laid her on my stomach while I caught my breath and she looked up at me, covered in blood and life sustaining matter.

Her eyes… I thought with sudden alarm, a sharp and unexpected strike into my heart. But it wasn’t because they were open so soon, or because they were so beautifully blue. It was because these eyes were so foreign and yet vaguely familiar to me. There was no instant joy with her arrival, only confusion and growing inner conflict. There were so many differences from the other babies; the small folded ears, the slope of her forehead. All around me people were welcoming and joyous. No one showing any signs of concern, my husbands’ face a mixture of happiness and pride. Surely what I saw would not raise any flags. This is my child, I thought, I love her.

“She looks like Mickey Rooney.” I whispered to my husband and midwife, and we all had giggled, an effect from the nervous and excited energy around us. I finally sighed with exhaustion and relief while Analise scored a perfect ten on her Apgar Test. We’re safe.

Now here in this room there was no escape back to that moment. I was being confronted with my suspicions and there was nowhere to hide, my worst fear right in front of me.

“It’s Down Syndrome, isn’t it?” I said in a throaty voice I hardly recognized.

The doctor gazed at my precious baby for a moment, sleeping soundly in my arms. I had been so eager to hold her, now that I had permission. My sweet baby girl to complete our family.

“That’s what I wanted to talk to you about.” She said quietly.

A blood test ensued and I numbly agreed to genetic testing. Our doctor also suspected a heart murmur and we immediately went for an echocardiogram which revealed three holes in her heart, one having a fifty percent chance of needing surgery in two years. I called my husband at work to tell him the doctor’s suspicions and results. He said all the right things, that Analise was here and that we will love her no matter what. That she is one of us. We’re a family.

Once the lab left our hospital room with my baby’s vials of blood, I clutched her to me, gazed out the window and let the waiting tears flow down my cheeks. I wept for all the things I dreamed for her, entering a world that until one hour ago I couldn’t wait to introduce her to and now fiercely wanted to shelter her from. A place with words like retard and disability. A world that presumes to know her value and dismisses her potential. I cried because I felt so helpless, so small and alone, unable to protect her, unwilling to accept an inescapable reality.

That night in my own bed I was looking at my daughter’s face. It was the same but entirely different now and I wondered how my body could have betrayed me? It had given me a near perfect pregnancy. I had declined the indicative test that had been offered. My last son’s numbers had shown a higher chance for having a child with Down Syndrome and I had spent the remainder of my nine months worrying. I wasn’t going to do that again, I had thought. I would trust my body that all would be well. But it was my body that allowed this baby’s cell division to fail, that couldn’t put the pieces of her heart together properly. If only I had been stronger.

I read about a study once that a new mother could be blindfolded and choose her baby when it was held close to her face. She could instinctively recognize her infant’s scent from hundreds of others. Before now this finding had comforted me. Reflecting on it briefly while nursing my other children, thinking to myself, I would know you anywhere, little one. And now this person in my arms felt like a stranger to me. Her disability, our connection, was behind the curtain and all I felt was anger and fear.

It was another cloudy afternoon when I sat with Analise asleep in her bucket infant seat, waiting again for the doctor to tell me the result of our genetic testing.

“So, as we thought, Analise does have Down Syndrome,” she said conclusively, leaning against a small desk in a simple room. I knew this was true but a hidden part of me thought that maybe we were wrong, maybe there was hope.  I tried to ask a question that was rolling through the trenches of my mind.

“Was it because I…or because we…”I began but was unable to finish. Thankfully the doctor quickly responded after watching the tears pool in my eyes. “Neither of you are a carrier of the gene.” I bit the inside of my cheek, unwilling to cry, unwilling to react, other than to nod my head. At least I was not a traitor.

“One in approximately seven hundred babies is born with this disorder.” Our doctor said reassuringly “This could have happened to anyone.”

But it didn’t, I thought as I drove home that day. It happened to me.

How would I raise a child with special needs? My other kids seemed, by comparison, half way to adulthood. They could read, write and were quickly grasping issues such as world languages and currency. Both of my school aged children’s teachers had commented on their advanced vocabulary and creativity. I was behind enemy lines, uncharted waters. The next eight weeks were met with waves of thoughts and emotions from despair to tearful joy. During it all I grew to realize that my greatest ally was going to be my child, in those intimate moments that cause my heart to soar. I had to grow to know her, just as I had for my other children. Everything else would fall into place. We were in this together, her and me.

As we embark on this journey every milestone, however minute, feels more like a victory. Her first smile, gurgle, coo and giggle seem indicative of the amazing girl and woman she will become. There are times when miserable thoughts invade my day, oppositional fears for her future, but I am becoming better at ignoring them.

Some nights I wake in a hot bed draped in sweaty sheets. I am disoriented, shaking off the remnants of a dream I had of a daughter that was supposed to be. Like a missing limb, I can still feel her, or rather the idea of her, and I have to remind myself that everything will be all right. I reach out in the dark to touch the bassinet by my bed and listen to the small shallow breaths coming from within. This is my baby. Someone I would die for.

I realized there is a choice I have to make every morning, the choice to surrender. I surrender to the love I have for my daughter.

In the end we are powerless against things such as society, biology or a diagnosis. In the end we raise the white flag and pray. We find peace in the virtue of motherhood, that unending love, the primal bond that unites us to our children despite and because of our flaws. We hold on to our babies and to our faith that with every battle, we will come out the other side together, sometimes bruised, but complete.

Sarah Konstantonis is a freelance writer who has worked as a social programs manager and counselor in British Columbia, Canada. She enjoys writing short stories and is completing her first middle-grade fiction for publication next year. She now lives in Brockville, Ontario with her family and can be reached at

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