By Kate Trump O’Connor
The 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 ktoconnor.com.
Brain, Child (Winter 2008)