Not One of Those Mothers

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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.

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