3.21 (World Down Syndrome Day)

Ever play the game "Where I was this time X years ago?" I do. Sometimes the game is voluntary, as in, "Remember this time two years ago? We were on Plum Island. It was 80 degrees. The kids were building sand castles and running through the waves in their underwear." Mark and I said this yesterday afternoon, bundled head to toe in ski-wear, trying to see the end of our ski poles in a sudden snow storm on the slopes.

Sometimes the game is involuntary, as in this evening, when something about the light and the air and pulling the van out of the parking lot of our town library to see a man walking his dog triggered this thought: "This must be what grief is like. This is grief." It was three years ago this time, and I was a new mom to a new son who had only two months before been diagnosed with Down syndrome. 

How is it possible to grieve the living child in your arms? The one you cradle, the one you sing to, the one you dance to sleep, the one you press to your chest and give life to? The one whose hands, arms, belly and legs you bathe, the one whose bottom you diaper and whose temperature you take? How is it you grieve what is not lost? If the child is not lost, then what is?

And this is what I remember: When I go out into the world it is precisely the same as I left it and I am a foreigner in it. No one knows me anymore, though I recognize them and they presume to recognize me. I am the woman who came through the check out line one week ago, pregnant. Now I am not.

"Oh! You had the baby! Congratulations! Boy or a girl? Oh, wonderful! And where is he today?"

"Home sleeping," I say and fake a smile. Home because it isn't safe to take him into a crowd yet. Home because in order to ride in the car I must strap him into a contraption that resembles a Moses basket more than a modern car seat, and people always want to know where you get such a seat. It looks so much comfier than the ones they usually sell. And I don't want the trouble of telling them you buy them at the medical supply store. That your parents make a morning's worth of phone calls and meet the delivery truck as it pulls into the store so that you can get the car bed that will let you take your tiny babe home. Sleeping because he rarely wakes up. Because to take a bottle or nurse at your breast for more than five minutes takes the wind entirely out of him. And so he sleeps. And you feed him on an endless cycle of trying and failing and pumping from a rocking chair that has become your current address. You don't tell all that.

And so they don't know it. And they don't now know you. That you are not always happy. That you feel like a stranger in your own environment, in your own skin. Lost in a place you call home but no longer recognize. That you are exhausted.

The grief is real, but the child is not lost. Then what is lost? The answer, of course, is you. You have woken up in a new place. One you weren't expecting and for which you aren't at all prepared. Like arriving in Holland when you planned and packed and boarded a plane for Italy, writes Emily Pearl Kingsley in her famous essay "Welcome to Holland." And since you are not expecting, are unprepared, you look for answers. You grill the pediatrician and the geneticist and you ask the nurses. You read books and articles written especially about children like yours and you absorb the statistics that are not cheery or hopeful. And you soak up phrases that contain unfamiliar terminology like Trisomy 21 and Early Intervention and Hypotonia. And you are utterly lost. You. You are the one who is lost.

Your child, the one your body nurtured without requiring your conscious efforts, that child whose foot rattled your rib cage and whose bottom pressed on your spine, the one who arrived early, and whose upturned nose is strikingly similar to his two sisters', that child is in your arms and right where you laid him down for his nap and wearing the clothes your relatives sent in the mail.

He is present. But because we live in a culture, in a time that tells us such a child is flawed, that he is, will be, "disabled," you are pre-programmed to first mourn him, before you can see him. Different is bad. Different is tragic. And yet even our federal government recognizes at least in vision what we often fail to live out: that "disability is a natural part of the human experience" (IDEA Act). Disability is  natural. 

In his memoir The Shape of the Eye, George Estreich writes, "Every one of us exists on a continuum of ability. The vast majority of us can look ahead to others who are better than we are at what we do. Ability is relative, but we suck it up and get on with it anyway. We don't play soccer as well as Lionel Messi, but we heave ourselves onto the pitch on Saturdays. We're not as smart as Stephen Hawking, but go up for tenure anyway. We can't swim as far as Karen Gaffney, who swam unassisted across Lake Tahoe, but we swim laps anyway. Only one of these extraordinary people (Karen) has Down syndrome, but the point remains: we live somewhere in the middle of the scale, in a world full of scales and less measureable things, and we find meaning in our lives anyway, either in doing better, or in other things entirely, such as people. In this, 'we' are precisely like people with disabilities--or we are all able and disabled....A less complicated view, of course, is expressed by the Golden Rule: we should not deny others the individuality and sense of possibility that we ourselves take for granted" (288). A loosely translated Golden Rule, but a true point, nonetheless. 

What I lost was not a son real or imagined, but my ability to imagine a future for him, for us, that was positive and meaningful. I lost a sense of possibility for his life, no longer knowing what his life could mean. I lost my identity as his mother, the person in his life who would nurture that possibility, would give him the tools to fly. Now the truth is Down syndrome didn't take that from me in the way I thought it had. In fact, Down syndrome has very little to do with who K is, who he will become. It will play a role, does play a role of course in all we do and in the way we see our future and in the plans we make. But it has absolutely nothing to do with K being K. Had I been able to grasp the beauty of that--that a difference does not steal value, does not squash potential, does not erase individuality or familiarity, does not limit love--then I might have felt less a foreigner in my own skin, and I might have seen my K as I see him now. A boy that I love. A son I am raising. A brother to my daughters. And do I have dreams for him? Oh, do I have dreams. And do I look forward to our future? More than ever. And do I worry? Same as I ever did. And do I love? So deeply. So much deeper, wider, higher than I ever expected to travel. And there is no grief that is not also joy.

And having grasped this, claimed it, I make this bold request:

That we use our eyes to see and our ears to hear and our heads to imagine--people. That we not rely on prescriptions like "stubborn" and "slow." That we not identify and grow comfortable on plateaus. That we imagine possibility, that we assume ability. I ask that we not use labels, not even positive ones, like "always happy" because of what they imply, because of what they erase. I ask that we see complexity and individuality and mystery. That we afford all children the right to thrive, the right to full participation in communities who recognize them as fellow citizens. 

It is a tall order, I know, in a day and age where research and technology have propelled us into a present where we can test for Down syndrome at ten weeks gestation without invasion or risk and launched us toward a future where the extra genetic material that affects human growth and development could someday be "turned off," like a switch. I don't know whether to say that these advancements are all good or all bad, but they will certainly affect us, and they will affect, for better or worse, how people see my son. But the truth is, the way K is seen is never neutral anyway; it is never not shaded by history and culture and science and assumption. And, I am sorry to say, the way I receive the words others use to describe him is never not shaded by an awareness of how people with Down syndrome have been treated and received over the ages.

I will tell you that I am indebted to the parents and professionals who have gone before us to dramatically change the landscape of possibility for our son. Had he been born in 1983, for example, his life expectancy would have been somewhere in his late twenties. Having been born in 2011, he can expect to live into his sixties. Had he been born in 1996, we would have been told that he would never read. He might never have been taught to read at all. Having been born in 2011, we know he will read, are preparing for that future even now. Having been born in 2011, we know he that if he wants to, he can attend college.

I will tell you that you will not meet a parent like me, raising a son like mine, who will not press against the definition of her child that presumes to know him without knowing him. Can't and won't are not words in our vocabularies. And Down syndrome, while it rests stubbornly in the backs of our minds at all times more out of necessity than choice, holds little significance in our hearts.

I tip my hat to 3.21 because it means our little boy has a very promising future. And more than that, I offer my deepest gratitude to those of you who have made our journey a small part of yours, who have stood up and stepped forward and reminded us time and again that we are in this together. That you are our people. Because we all do need people. We need each other.

And now I sleep, for there are three very precious littles who have stolen  my heart and headed for the hills on that wild, wonderful journey called growing up. It will need my full attention if I don't want to miss this once and only dance.

(Note*I am so grateful for G. Estreich's memoir, for the well-researched and thoughtful prose with which he deconstructs the rhetoric of disability and offers a clearer way forward.)