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)

Subscribe to Brain, Child

The Age of Sudden Awareness

The Age of Sudden Awareness

By Marla Kiley

kileyart-1“Grab my other hand,” I say to my five-year-old son, Dillon. He walks to my left side and reaches up higher than normal to reach my short left arm. With my free hand I reach out for my three-year-old, Dane, and we safely navigate the three lanes of traffic to get to the neighborhood library.

As we reach the sidewalk, I catch our reflection in the building’s glass. We look crooked, as if I’m leaning over to say something.

“When will he notice?” I silently wonder. Dillon pulls away and skips ahead to push the automatic door button. So far he has not said anything about my being different from anyone else. It has been my experience that four-year-olds notice. I was expecting Dillon’s observations to begin around that age but, so far, nothing. Dane is at least a year away from seeing anything beyond the end of his nose and, if he’s anything like Dillon, it might be longer.

They have not noticed that I was born without an elbow in my left arm. I have no exciting, or at least interesting, story to add to that fact, which is a shame. The doctors call it a random birth defect, without further explanation. My arm is shaped something like a long banana, half the size of my other arm, with a normal but slightly smaller hand at the end. It’s an unusual deformity in that most people I encounter don’t even notice my arm until I have been around them for an extended period.

Maybe I am just unaware and more people notice than I realize. Perhaps most people are just very polite and discreet in their glances. However, I tend to think my arm is not noticeable because I, for the most part, am completely forgetful of it.

I’m not at all worried about my kids seeing that I look asymmetrical when I reach out my arms for them. All kids seem to go through the textbook phase of being embarrassed by their parents; at least my kids will have a particular feature to be distressed about instead of feeling a generalized horror. Yet, I do wonder how the awareness will manifest itself.

When my niece turned four, she became almost overly fascinated with my arm’s being different. For months, every time I saw her she ran to my left side and said, “There’s your little arm,” almost to reassure herself that it was still there and the whole thing hadn’t been some bizarre fever dream.

Another little girl whom I had seen daily for years (and yes, the girls do seem to notice and comment more than the boys do) suddenly noticed the difference in my arms. She sucked in her breath and cried, “What’s that!?”

I had to explain that my arm had always been this way and that it didn’t hurt—they always ask if it hurts—and that the only difference was that she finally noticed. After accepting all this information and asking countless more questions, she finally resigned herself to the fact that the arm was staying and said, “Poor little arm.” Which she repeated to me day after day after day until she became bored with it.

Only as an adult and only very recently have I had to deal with this strange phenomenon of my arm being the focal point of conversation. When I had infants and toddlers, I was around parents of infants and toddlers, and my arm was a non-issue. It conveniently curled around little ones. But because I now have a three- and a five-year-old, my world is full of three- and five-year-olds in what I call “The Age of Sudden Awareness.” Nowadays, nearly every time I’m around children of this age, a small child will end up pointing her finger, dropping her jaw, and saying, in a flabbergasted rush of air: “What happened to your arm?” followed quickly by, “Does it hurt?”

It surprises me every single time. Occasionally, the comments will fluster me if I am jolted from mentally preparing dinner or something similar, and I stammer for a second while I try to connect the child’s words with an acceptable response. Contrary to what most people think, though, the eruptions startle me, but they never bother me.

It does bother the parents of these children, some of whom are good friends. They fall over themselves trying to distract, reprimand, or apologize for the child. No matter what I say to the flushed parent, it seems to only make it worse for everyone. I understand their embarrassment. I have been in their shoes many times.

Once, after Dillon had pointed out someone who was in a wheelchair very loudly and very rudely, I took him aside and said, “Some people are different. Mommy has a shorter arm. That woman was in a wheelchair. Some people look different than others on the outside, but we are all the same on the inside. Next time you see someone who is different on the outside, wait until we are alone in the car to talk about what you saw so we don’t hurt their feelings.”

I did get him to agree to wait and not yell out his thoughts, but he seemed deaf to my comment about my arm. Shortly after that, we were in a bookstore when a man on crutches who was missing a leg passed by us. Dillon shouted, “Mom, look at that man! I want to talk about him in the car!”

I wish I could tell that story to the parents whose kids approach me. Sometimes I can, but most of the time it would just make them feel worse. I like that kids question what the rest of us see as obvious. I wouldn’t change their honest appraisal of life even if I could.

As a result of my experiences, I have had well-meaning parents solicit my advice on how to teach their children about people with disabilities. Although I always try to say something wise, I’m just being a poseur. I have no idea.

I have had many “sensitivity” talks with Dillon, and just when I think we are over this stage of pointing and staring, he pulls a doozy. Recently I heard him say to a new mother, “Your baby is so cute.” Then he ruthlessly added, “But its face is all ugly.”

Being an adult in this world of The Age of Sudden (and Vocal) Awareness has brought an interesting shift in my life. I have very few childhood memories of anyone talking about my arm, although they must have. My mother wrote in my baby book that when I was asked about my arm, I would matter-of-factly announce, “I was born with it,” in a tone that did not invite further comment.

A few years ago, a mother I know surprised me by anxiously asking if I had been teased at school. I think she was preparing herself for what her daughter, who has a very noticeable physical difference, might experience some day.

My mother and I happened to be together when this concerned woman put forth her question. Before I could respond, my mother flatly said, “I don’t think they would have dared.” Although we probably confused this poor woman more than we assuaged her fears, I knew exactly what my mom meant. Words have always come quickly to me, and sharp, biting words have flowed even more smoothly.

I have argued that my biting words and dry sense of humor may have developed as a defensive mechanism, but my mother assures me that I was delivering caustic quips as soon as I could talk, long before a defense was necessary. The truth was, I never needed to use this “talent” in a defensive way.

I know I am expected to have horrible recollections of being tormented by other children for being different, but I never was. I always had friends and boyfriends, and I was—if I am to cast off all modesty—very popular.

I do recall one ugly event at a football game in high school. My boyfriend informed me that his friend thought I looked like a seal when I clapped. The comment gave me a sharp stab of pain and a sudden desire to break it off with this guy whom I had been crazy about. I was so vain that the comment did not hurt my self-esteem. Strangely, it did make me hate him for noticing that I did look like a seal when I clapped.

I waited a week to break up so that he couldn’t connect the two events. The isolated comment stuck with me, and I mentally prepared several snappy comebacks in case anything like that happened again. But before long, the cruelest of all beings—human teenagers—voted me the homecoming princess. It was hard to hold onto one “seal” comment after having that sparkling crown placed on my head and my flipper filled with roses.

In those days, I was self-conscious of the way I looked, like most teenagers. I felt my worst feature was what I believed to be an enormously poochy stomach. I was five foot eight and one hundred ten pounds. I doubt I had a pooch anywhere except in my eyeballs when they strained to see my stomach. My arm didn’t even make the list of top ten things I thought was wrong with me.

For this, I give my parents all the credit. I was never treated differently from my seven siblings. I did the same chores as everyone else. It might have helped that, with such a large family, my parents didn’t have the time or energy to treat me delicately. I grew up sturdy. I am sure that that led to my ability to forget about my arm and project that same attitude to those around me.

Yet today the four-year-old detectives in my life have bypassed my nice, neat barrier of silence on the subject. Although I could happily have gone my whole life without hearing the “seal” comment, it may have broken me in for what I would hear twenty years later out of the mouths of preschoolers—my favorite being, “That is soooo gross.”

Still, it’s one thing to have other people’s children go into shock over my arm, but another thing altogether to have one of my own children suddenly see me differently. That might affect me. To circumvent this confrontation, I have tried to talk to the kids about my arm, holding it up for display. I swear they cannot see it. I have yet to elicit one word on the subject from either of them, so I have had to let it rest. When they do notice, I’m sure I’ll be the first to know.

Of course, I could be looking at the whole situation completely wrong. I suppose that because I’m their mother, I am how all mothers should look, in their eyes. Who knows, perhaps my children won’t ever notice my arm. Perhaps they’ll wait until we’re in the car and then quietly ask me why so-and-so’s mother has two long arms that look exactly the same.

Author’s Note: After writing this essay, my memory began to kick in about other times in my life that my arm seemed to play a pivotal role. I have had two employers tell me that they were reluctant to hire me because of my “disability.” They shared this with me only years later, after I’d become an insider. I guess that, before, I was an outsider and they had to watch to make sure I wouldn’t file a disability claim or demand special equipment to do my work. Even with these memories, and others that are gently waking, I have a hard time sitting in the victim’s chair. It has never been a comfortable fit. I hope I can pass this attitude on to my children. I don’t think that words can do it—I guess it has to be modeled. Wish me luck! 

Marla Kiley lives and writes in Denver, Colorado. She has worked as the features editor for a local newspaper and a senior writer for a dot com. Her essays can be seen in the Cup of Comfort anthologies or magazines such as Colorado Homes & Lifestyles, The Writer, and Old House Journal.

Brain, Child (Summer 2004)

Illustration by Oliver Weiss

Want to read more thought-provoking essays? Subscribe to Brain, Child: The Magazine for Thinking Mothers and see why we’ve been receiving awards for literary excellence since 2000.