Father's Day

It’s cold today. Later June and still, this chill in the ground, in the roots, still holding onto the memory of winter. All ice and snow in the shoots. There are birds though. I watch them fly back and forth across the yard. Hurrying, forever employed, desperately beating wings in air. My flowers cannot gain purchase on this summer, but the birds choke the clouds with their song. And it is Father’s Day.

Sometimes, in my late-night moments, when the work of the day is done, after I have told my husband all the household news: the updates from therapy with Willa, the thoughts of the doctors from the appointments, the latest news from the CS listserv, when alone in the quiet of falling-to-sleep, I feel like today. There is a chill still in my bones. There is ice and snow and winter maybe in the marrow.

There are birds though, the thoughts of Willa smiling in her high chair, the good news, the small battles won. This tumble of day memories and thoughts are busy, forever employed, as I am as her mother. But unlike today, unlike the shoots that struggle to grow in this cold wet June, I am warmed by the man beside me. All is thaw and sun and future flowers.

I cannot imagine what this year has been like for my husband. What being Willa’s father is like for him. I cannot imagine what he has felt in his quiet falling-to-sleep moments when you are too tired to not be completely honest with yourself. I can barely wrap my mind around my own such things.

But I do know this: without him I would gain no purchase on this life, without him my daughter would not grow, without him all would be winter frost and no birds, no song, no nothing.

So I thank you and can tell you this: that little girl loves you. With everything she has. And she knows something so incredibly important, she knows something that lives in her bones, that fires the fierce warmth inside her tiny self: you are her daddy.

Happy Father’s Day.

You Just Get

A little while ago I had a conversation with Kirsten about the surprises of having children. Another new mother, she has also found that while we prepared ourselves for “nothing will ever be the same” we could never have prepared ourselves for what that actually, daily, really meant.

The disappointments that come with losing all control of your life, the challenges associated with the things we do not like or enjoy about motherhood, the seldom acknowledged but palpable grief we feel over the loss of our former lives all get obscured by our children. We feel all this for them. We give all this up: control, sleep, a bit of ourselves for the children that bring us to a new place, an Invisible City for every new mother.

Until our children were born we were denied entry. The passports required were not yet assembled. But with the baby came the journey and we arrive on the shores of the Land of the New Self in which you meet, for the first time, the person you have become. It is the Land in which you are a mother.

Kirsten also said something to me in our conversation that I haven’t been able to shake, “You just get.” We do. Be it a boy when we hoped for a girl, be it Costello Syndrome rather than a typical child, be it brown eyes rather than blue, we just get. It’s a Yankee swap, the lottery, bingo. You put a hand into a bag and pull out your future. No backsies.

There are people who say that you only get what you can handle. I don’t agree. I have no gifts that endowed me with a special patience, acceptance or greater virtue. But I had to adapt. I had to change. I had to learn for my daughter because she needed me to. That’s motherhood. You change. You learn. You adapt because if you don’t you will lose the most important thing in your new life: the health and happiness of your child.

If I just got her than Willa just got me. Yes, I think we were lucky to get each other. We have both worked hard this year. Her to live and flourish. Me to break old boundaries I had set for myself and grow new distant horizons I hope to reach. And if it’s not her fault for being who she is, if it’s not my fault for having faults, if this new thing isn’t perfect than everything is exactly as it is meant to be. But that does not absolve you of the onus to improve. We can be better. And it is absolutely amazing what you learn to love and enjoy and thrive in.

In my Land of the New Self it takes me a while to find the Mother Me. We have trouble recognizing each other. So much has changed. But I take her hand and hold it tight. You just get. You just get.

The Dread Pirate Biscuits

Well... We didn't have one of these yet...

The Blame Game

Since Willa was born I have had an extraordinary number of people ask me if I was going to sue the doctors who did not tell me that my daughter was going to be born with Costello Syndrome. “Are they going to be responsible and pay for a lifetime of medical care?!” I have been asked if I was going to sue because I must be so angry that they did not know before she was born. I have been asked if I was going to sue because how could they have missed anything as major, as huge, as forever as this?

They want someone to pay. They want to know who was at fault. They need to point the finger and drive the verdict through them like a lance.

At first I thought that person was me. I thought I should have known. I apologized over and over to my husband. I feared he would blame me for not knowing what we were going to encounter; for not preparing us for Willa as who Willa is. Before she was born, we already knew her name, why didn’t we know this? How could I not have known?

I couldn’t blame booze, I couldn’t blame drugs, I couldn’t blame family history, a fall down stairs, unpasturized cheese, nitrates. I had none of those things during my pregnancy. I gave up sugar because they thought I might have gestational diabetes (which I never had). I stayed on three months of bed rest where I only got up for appointments with my obstetrician. I read all the books, I drank a lot of water, I rested, I waited, I prayed.

In the end none of that mattered. We did not have a typical child.

And I realized almost immediately after Willa’s diagnosis that blame didn’t matter either. For two very important reasons. Firstly, it was no one’s fault. Medicine is not perfect. Doctors are not perfect. We are not perfect. There are still mysteries regardless of neonatologists, fetal echos, MRI. Blood tests will tell you nothing, amniocentesis will hide the truth, neuchal translucency measurements can be questioned. In the barking, snarling early gasps of cellular development things happen that will be forever hidden from us and in these early stages all manner of fates are decided. The mysteries will never be revealed.

Secondly, and much much more importantly, Willa is not a punishment. I do not need to blame someone for giving me the most amazing person I have ever met. I am not angry that she is my daughter. I am not sad. I feel no loss. I have only thanks now for what I have been given and I embrace that which I cannot control, namely Willa herself: my mystery, my beautiful daughter and this life we all have together.

More Vocabulary

I am still thinking about words. Anonymous wrote a comment that I deeply appreciated about the proper usage of Ds vocabulary. I realized that I always thought “Ds” meant “Downs” not “Down syndrome.” My eyes saw one thing and that’s what I thought it was. The comment further discussed how the usage of defining a person with Ds should be just that, a person with Down syndrome, rather than a Down syndrome person.

In the Costello community the opposite has been offered. That defining a person as having Costello syndrome, rather than a “Costello person” makes them sound as if they have a sickness when the syndrome is just the person, a defining identity trait. That saying, “Costello person” makes the syndrome and the person the same, while Anonymous pointed out that they preferred “person with Ds,” to put the person first.

Why does this all matter so much? Why so much discussion about whether to put the syndrome before or after the word person?

I find myself of two minds. Perhaps even more. It matters because words are balled fists. They land punches. But also, in the energy given over to the defining, the categorizing, the making acceptable what is ultimately not are we losing focus? Is vision blurred so you see, for example, Costello Person and not Willa?

I guess the problem is I see both. I think we probably all do. You see your child, their individuality, their themness. But you always see that other too. The features shaped and guided by their syndrome, the traits they are predisposed to.

And aren’t they both? This and that. One and the other.

It matters and it doesn’t matter. I suppose most importantly because we live in a greater world of eyes; of people who do not see the same things as us. They see the syndrome. We see our kid. They call names. We say their names. Are we trying to construct a house of words that will protect them when they are out in the world? Because when they are in our arms do we really care what the hell difference it makes whether it’s Costello Person or person with Costello Syndrome?

I think we are trying to pave something for them. With this focus on terms and usage we are trying to tell other people how to think of them. We are desperately trying to pull back the veil so they can see, all in that one moment when they encounter our family. But it will always fail. Because by the very nature of having to do any of this we are only drawing the difference more boldly. We are darkening the line. We are, in the end, not fooling anyone.

And here my other mind has its say. It still matters. We still try. We must. We are parents to these children and we cannot help ourselves. We want, like all parents do, to make our children’s lives better, easier, happier. It’s harder for our kids and for us and so we battle with these words. We write and rewrite our rules. We push language around so much with our tongue we can always taste the flavor of it. Sometimes bitter, often sweet, always there.

Before There Were Three

Before there were three, there were two. A very happy two. A two that did everything together, as if all errands, all decisions all challenges were made with legs tied together, a constant three-legged race. The material that bound us would change. Sometimes it was rope, sometimes slick ribbon, sometimes the thinnest of cord. But it was always there. If you took it off, the legs bore the imprint, felt the sting of its removal. So even when unbound, the memory of the binding remained.

When I was rushed into the operating room for Willa’s emergency c-section my husband was not allowed to be with me. We felt the fibers stretch. When she was taken to another hospital at two weeks old we walked so close to one another we shared steps. When we were told she had Costello Syndrome the binding came all out of order. It shifted from the ankle to the knee, to mid-calf and then up at our throats, choking us both.

I have learned that when you have a sick child all binds can break between husband and wife, now father and mother. That which may have held in your past no longer applies to these new feats of strength. Your string may not be able to hold. Or, you would now be bound more tightly than ever imagined. That new threads would grow from this new root. That new knots would develop and fiercely protect your connection.

The only other thing that scared me about Willa’s diagnosis was that I might lose my husband. That in the shocking newness of what was terrible news we would not survive the earthquake. That mountains would be thrown up between us, that the mail would not get through, that we would begin to live under different stars.

We pulled at the binding, I heard it snap and lurch and creak with the weight of such unexpected sadness. But then I felt it pull us back together. We began to again walk step in step, though with new feet. We tie ourselves with a bow now, easy to undo should the strain prove too much, but it doesn’t break anything and when we have recovered we tie it up again, prettily. A gift of ourselves to ourselves and each other.

Before there were three there were a very happy two but now we are all one.

Living in the Land of Fear or Fearing Fear Itself

There is a light that happens every evening, when the warmth of the sun has left and all that lurks are cold shadows, silver streaks and the uncertainty of your very vision. In the Land of Fear this is the light that permeates every moment, wetting the world under it, making things drip with a humid decay. Ruined houses sit in rows, each house the same, each row identical, on and on toward a horizon that never comes. This land stretches on forever.

Cats missing legs or tails or bits of ear pick from garbage left by sad lives. There are small dolls, scraps of paper with unheard or unanswered love notes on them, fish scales and bones. When you walk the streets here you must watch your step, things are underfoot that move.

When your child is diagnosed with anything, this is where you live.

I had a birthday recently. I’m older now. Again. This year I felt the change. I am different, for the first time in a long time I can feel where I am not the same. Not just in the body which bears the scars of the shift. Not just in the heart which has grown with love. Not just in the mind which bends but I have learned will not break. I am different in someplace deeper. I no longer fear anything.

What we have all been told is the worst nightmare, and what most certainly is: the loss of a child whether literal or the death of the child you thought you were to have has happened to us. Our Land of Fear brought home ruined houses filled with empty cribs, snakes curling around peeling slats and moths grown fat from shattered linens. We walked the streets. We could not get out. We could not find the horizon.

But you learn to breathe through this. You follow the bubbles to the surface. You find new light again.

And so I now know the worst can happen and I know that the very worst thing can be the best thing that ever happened to you. And it changes you. Fear lives in the deepest part of each of us. It hides there, peering out with eyes of coal. Every once in a while you see it blink. This is how you know it’s there.

This is not to say that I never feel scared, I still do from time to time. But I no longer care. I can stare back at those eyes. And I, do not blink.