Things Danny Taught Me: A Father's Story - Child with Down Syndrome

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Things Danny Taught Me: A

Father's Story - Child with Down Syndrome by Francis X. Maier Franis X. Maier is

Chancellor for the Archdiocese of Denver and Special Assistant to Archbishop

Chaput. This article first appeared in Commonweal magazine and is presented

here with permission of the author.

He stood there, dignified, in his polyester fastfood uniform, earnestly waiting

for the bus and oblivious to the river of traffic around him, to the forced

smiles and brief. uneasy glances from passersby.

In a world of multiple urgencies and lives racing at 50 mghz, he had one focus

only--in this case, the Laurel Canyon bus to Mc' s. He was alone, and he

needed to concentrate. He had a job. That meant a schedule and

responsibilities.

Stopped at the light, I watched him through my windshield. He was eighteen or

so, short black hair slightly askew, with the thick body and unfinished facial

features so common to Down's syndrome. Three years ago, I would have looked

away, just as the other people nearby on the street were doing now.

But instead I just watched. I find that I can't look away anymore, not from

Down's people, not since Danny.

My wife and I were both forty-one when she became pregnant. It was a surprise.

We had been out of the baby business for nine years. Suann was teaching full

time and going to grad school. We had three older kids. I had my hands full

with my own job. And yet the news was like a wonderful fresh wind. Sure it was

inconvenient, and yes, the future would get a drastic overhaul. But we were

also excited. After all, we were veterans, more experienced and relaxed, and

more financially stable. Secretly too, even more than my wife, l just wasn't

ready to let the idea of babies go. All those mistakes with the first three--

well, this time, we'd get it right.

We knew the risks. We got the standard, " so-you-can't-sue-me-later "

briefing from the obstetrician on birth defects in older women, but both of us

had been active on the abortion issue for more than a decade. It was never an

option. Even after the first, slight hint of trouble turned up in a blood test,

we declined an amniocentesis. What was the point? The results would be

unreliable, and the test itself could hurt the baby. Better to leave it in

God's hands; he'd handle it; which, in his own way, he did.

I remember the exact moment when I knew, with my heart anyway, that things had

gone south. We were in the ob-gyn's office, and on the ultrasound screen, as

the baby swam serenely in the womb, the doctor measured the fetus's arm once,

then again, and then a third and fourth time. Suann, smiling, devoured the baby

with her eyes. But I knew, and so did the doctor. There' s a statistical

relationship between bone-structure abnormalities, particularly in the upper

arm, and Down's syndrome; not enough to be conclusive, but enough to spark

shallow words of reassurance and advice for a second opinion.

Two weeks later, Danny was born by emergency C-section, blue, limp,

underweight, lungs filled with fluid. Three things happened in rapid

succession: They suctioned the liquid from his lungs; I held him as my wife

baptized him; and they took him away to intensive care.

It's then, with the baby out of your arms and the big emptiness just beginning,

that your heart is most like a vacuum, and into the space comes a rush of

feelings that are hot and contradictory, that make you ashamed and exalted at

the same time: anger at God; fear about the future; helplessness and failure

without a bottom; but also an absolute clarity that you can handle this; an

urgency to protect the baby and his mother, to somehow make the cup pass by

cutting a deal with God; or hey, maybe there's been a mistake; and even, most

humiliating of all, a wheedling pride that whispers: Maybe I can use this.

You discover a lot about yourself. I assumed, with the callousness writers seem

to perfect, that this " Danny thing " would be the source of so much

good material. Well, he is; but not remotely in the way I expected. For the two

years since his birth, every time I've sat down to write about him, an arctic

silence has settled into my head. Danny will not be used. He is too intimate,

too demanding, too funny, too eager to play; he does not fit conveniently into

a prefabbed holding pen for the mentally handicapped. And I am too ignorant and

not far enough along the road to offer any advice, other than to recount the

experience of my own family.

I know that this is doable. It hasn't been easy, but it hasn't been a cross

either. You stop thinking like that. Danny's just here, he's part of our normal

routine. You adjust. Our manage has the same love and strengths, and also the

same faultlines, it always had. So does the family. You learn to stop

melodramatizing; you get tired of your own bathos.

I also know that we've been given a gift. A friend, Chicago novelist

Creevy (Lake Shore Drive), the brother of one Down's person and father of a

Down's daughter, puts it this way: " The best thing [about a mentally

handicapped child] is having a son or a daughter in whom you're never

disappointed; you're absolutely out of the business of disappointment .... So

many of the expectations that in parents turn tragic, we're safe from. And in

its place comes this wonderful, unconditional love, an unburdening from the

hunger for perfection. "

It's a kind of redemption. You enter a community--parents of sick and

handicapped children--filled with far harder stories than Down's syndrome;

where quiet, heroic love is an ordinary affair, and you learn from it. Danny's

brothers and sister are a part of that now; they know what the imperfect look

and think and feel like. They aren't afraid.

I also know, as my novelist friend says, that a " supposed normality which

begins to eliminate 'otherness' in the name of its own self-image " is

profoundly evil, and that " [words like pro-choice,] while they're supposed

to embody liberalism, are really the worst and most terrifying kind of

conservatism. "

Down's syndrome children are becoming extinct. Most are now aborted before they

can be born.

Ninety percent of Down's children are only mildly to moderately retarded. And

while they are prone to a wide variety of physical ailments, nearly all are

treatable. In fact, most Down's children, with love and care, can live happy,

productive, surprisingly independent lives.

So whenever I pass that young Down's man in his Mc's uniform, I look his

way. I'll tell you why. There is a person there; someone with courage. He has

ventured into a world that doesn't see him, and in his own way, he is

succeeding in it.

I look at him, I watch him, I pray for the eyes to really see him--for my own

sake. The problem, I have learned from Danny, is not with his humanity, but

with mine.

http://www.benotafraid.net