I received this article from another leader of family-centered care at a hospital in Michigan. The article was originally published the magazine "
Brain, Child." I really appreciate this mother's perspective -- I share it too. Many parents have said things to me like, "I don't know how you do it" and "I could never do that." My response (that I have yet to actually say aloud) is always, "You do it because you would do anything for your child," "I didn't think I could either," and "Yes, you could too do this... if it was
your child you would."
by Kate Trump O’Connor, from Brain, Child I’m going to confess something.
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.
Before Thomas, my world was largely untouched by disability. I went on with my life, unaffected and unconcerned, and I never had to face my own ignorance.
Then, one beautiful June day, I was forced to face it—and the face it wore looked just like his brother’s, with round cheeks, a tiny nose, and the deepest brown eyes.
Thomas arrived three weeks early on a sunny Friday in June. 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 pain of delivery—his birth, my second labor, was quick and almost 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 him 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 he and the nurses worked to resuscitate my baby. I was too giddy to notice as 10, then 15 minutes passed.
“He’s having trouble breathing, so we’re sending him to the special care nursery,” my doctor said. I remember thinking that it was OK, that these things happen all the time.
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 briefly held him and said, “He looks just like his big brother,” my obstetrician 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 Thomas again.
I have to stop here for a minute, before plunging ahead into the next chapter. It’s vital that I get this right so you don’t do what we all instinctively want 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 couldn’t 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 mother who, but for the grace of God, the universe, Mother Nature, and random chance, could be us.
That other mother 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 see. 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, and you know that you wouldn’t have the strength to do it.
You mean this as a compliment.
It’s not. It’s the verbal equivalent of throwing salt over your shoulder. It’s a fervent and silent plea: Don’t pick me. I’m not strong enough, I don’t have enough faith, my heart isn’t radiantly kind. And what will he look like? And will I be able to love him, truly love him?
You wish desperately to believe that special mothers are chosen. That God doesn’t give us more than we can handle. Two years ago if I had been told that at two days, instead of being discharged, my baby would be put on a lung bypass machine; that at two and a half months he would have open-heart surgery; that at 14 weeks he would come home, alive but fragile, with a feeding tube and an oxygen tank—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 the first gift we would receive after my son’s birth would be a book titled Babies with Down Syndrome, a present from the chief geneticist at the big-shot hospital? Certainly I would have paled and looked around. Me? Surely you mean someone else—someone who hears all this and doesn’t turn away in fear.
Perhaps you’re still skeptical. You can’t let go of your certainty that somehow I am a different breed of mother. I know you’re wondering, so I’ll tell you. No, I didn’t get all the prenatal tests. No, we didn’t want to know. Yes, we chose the uncertainty. We never really imagined our baby would be born anything but healthy and perfect.
Now, I must concede: I am a different kind of mother.
Thomas is 20 months old now. At night I sit by his crib and watch him sleep, mouth open, the sleeve of his 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. His plump cheeks 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. 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 the morning, 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’ve been through, they’re 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 would have known deep down that I was not. If you had told me that I would sit here today by Thomas’ crib and say that on most days I don’t think much about his having Down syndrome, I would have said you have a fantastic imagination.
But the truth is, whoever or whatever is in charge of baby placement didn’t see anything in me that is not in everyone—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’ 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.
Kate Trump O’Connor lives outside Boston with her husband, two sons, and twin daughters. Her website is www.ktoconnor.com. Excerpted from Brain, Child(Winter 2008). Subscriptions: $19.95/yr. (4 issues) from Box 714, Lexington, VA 24450; www.brainchild mag.com.
