I came across something today......

Something that brought back a lot of emotion. I remember the first time that I ever read it. I was upstairs in the office, which is now Lila's room. The memory is so vivid in my mind; I don't think I will ever forget it. I was sitting at the computer desk doing google searches on Down Syndrome. It was the week of May 7, 2006. I was 17 weeks pregnant with our beautiful daughter, Lila. At the time I knew that I was pregnant with a girl, named Lila after my mother, and that she had Down Syndrome. It was the day after we had received the results of the amnio. At 11 weeks we had the nuchal translucency test resulting in a 20% or 1 in 5 chance of having a child with DS. The markers were there and the doctor pointed them out on the screen as we stared, wordlessly, not knowing what to say, or even think. I had an amnio 5 weeks later.

During the period of time between the nuchal and the amnio, I knew in my heart that this baby had Down Syndrome. Tiffani and Justin told me that they knew it too, but Nick wasn't in the same place. I'm not sure if it was denial or hope, but he just wasn't ready to go there. We were sitting on the couch together when we got the call. "Mrs. Nargi, this is Dr. Nies. Just wanted to let you know the results of the amnio. You're having a girl and she does in fact have Down Syndrome." I don't really remember the rest of the conversation. Nick knew, by the expression on my face and by my response, I'm sure. The rest of the day is really a blur. Even though I knew in my heart... to have confirmation... that was something.

So back to my memory. I was sitting in the office doing research on Down Syndrome. Struggling to take it all in. Trying not to read the negative things but being drawn to them anyway. Wanting to soak up all of the information that my weary mind could contain. I came across this story, written by a father of a young boy with Down Syndrome. I cried like a baby when I found it today, just like I did the first time I ever read it. You may have seen it before, but it bears repeating. (I'm sure that this was written before the big emphasis on "people first" language but still so beautiful...)

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 McDonald' 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 Patrick 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 McDonald'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.



  1. This is Joyce. I have not seen this before. it is beautiful. The phrase I just love is "in whom you're never disappointed...you are out of the business of disappointment." I would not have completely understood that when Sarah was younger, but I sure do now. Thank you for sharing this and your life with Lila.

  2. That was amazing, and beautifully written. I've never seen that before, either, and the same line that stuck out for Joyce also stuck out for me--I think we will be very fortunate, indeed, not to have the issues that we would be faced with with a "typical" child. I know that sounds weird, but Samantha is and will be our only child and I know that I will be proud of everything she ever does.

  3. Yep, I knew it. I started reading this earlier today. I was ready a bit early to go to town, shocker, and so checked to see if you'd posted yet. Started reading and could tell what was coming so decided since I didn't have time to repair my face, that I would read it later. Good choice! This was so touching. I've watched you over the last two plus years and have been so proud of you and the way you've handled yourself, Lila and life. God has given you a special grace and you've used it well. What a blessing you are to me and sooooo many others. Especially the ones who need hope, a listening ear and just someone to come along side and help steady them when they feel weak. You've always been a caregiver in so many ways and now God has given you a new way to use your gift. The blessing of Lila was not just for you and your family but to the many you are willing to touch in whatever way you can, as you always have.

  4. Damn it...that last paragraph killed me...

    Also, I am with Becca and Joyce...that line is killer...I almost lost it there thinking of how proud I am of Lila, but I regained composure, only to crash in flames and have tears falling on my cheeks by the time the word "courage" was written in that last paragraph.

    We've known from before she was born or before she even had downs that she was going to be something else...I'm not sure we could have ever expected such a blessing of grace. I mean that in the way that we receive Christ's love and forgiveness, that it's something we don't deserve, can't earn, and can never pay back. There are two things like that in my life...Jesus' love for me and the little girl who is represented by the star tattoo on my wrist...Lila Madison Nargi...

    I'm not sure I'll ever have another thing to place in the category of "Grace." I think that's been all covered now.

  5. Also, in the section you have labeled "Lila loves....." it appears that you've listed Tiff, Nick, and Me but forgotten yourself...so put something there about yourself...or let Tiff, or I will when I come home...because you're Lila's unsung hero, the director of the behind the scenes work in her life.

  6. Linda - I'm having a surreal moment while reading your post. During the first few weeks of May 2006, I was on bedrest with Matthew due to going into preterm labor at 31 weeks. He wasn't due until later June. We did not have a prenatal diagnosis but had an abnormal AFP. We decline the amino and instead had several ultrasounds to identify markers. They never saw any markers and we always recieved "don't worry" responses from the doctors. For some reason, I always had an unsettled feeling throughout the pregnancy. After experiencing preterm labor they found a digestive abnormality and I immediately knew our baby boy had DS. During my four weeks of bedrest I couldn't stop scanning the internet for information on DS. I remember coming across this same story and crying my eyes out. Small world that we were both in simliar places at the same time. I hadn't seen the story since that time. Thanks for posting it and sharing your experiences with others.

  7. btw, Justin your comments were very touching and made me cry even more. Lila is blessed with wonderful siblings!