Sunday, June 21, 2009

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.

Wednesday, June 10, 2009

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.

Sunday, June 7, 2009

The Dread Pirate Biscuits

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

Monday, June 1, 2009

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.