Laurel's Story
Diagnosis: Dandy-Walker Syndrome
By Kate
Please see more stories from Kate on her blog:
My Story
Dandy-Walker Syndrome
The Grief Hangover
Every time I sit down to write this story, I am immediately overwhelmed. Again and again I stand right back up and walk away.
I like to think of my grieving self as a whole room full of women. Some I like more than others, but they're all parts of me. One is
sweet and compassionate and wants to reach out to help others who have been through my hell. Another is a fiery activist with a
sharp tongue and a self-righteous sense of justice. Then there's that mean one who instinctively cut others down when they make me
uncomfortable. As I said, I like some more than others.
The biggest of these persona’s is most of me: my deepest feelings, my core values, my central self. I trust her. I admire her. She
feels a lot of calm sadness right now. When the shit really hits the fan, everyone else shuts up and looks to that me, the core me, to
call the shots.
There's another character (or twelve) in there. Confessional me pulls her way to the front and takes over every time I try to tell this
story. She's carrying a lot of my shame. She wants your understanding and forgiveness. Her story is my story. It's no different. And
it's a real heart-wrencher. But I don't like the way she tells it, sobbing through a screen behind a velvet curtain. I don't want to confess.
I know, deep down, that I don't need anyone's forgiveness. I know that I did my best in a tough situation. I just want that version of
myself to sit down and let the core me finally open her mouth and speak this truth. Not to some figure of authority. Just to speak this
worthy story out in the fresh air.
I am genuinely afraid of rejection, meanness, harassment, and even violence from this sharing. But so far, sharing my story has
brought me nothing but love. Every time: love.
And so I'm taking this chance, and hoping that I can build some bridges, heart to heart. When, 35 weeks pregnant, I sat in the
neonatologist's office and heard the horrendous collection of problems that my daughter's MRI had revealed, and the even more
horrendous range of expectations for the extent of her discomfort and disability, when it was revealed to me that my daughter's life
(if she was to get one at all), would be a tortured existence, I finally got it. I finally understood why my brand new high-risk OB had
mentioned, right off the bat, that she could definitely help us arrange an adoption and might be able to help us arrange an abortion --
if that was what we wanted.
At the time, I had physically recoiled from both words. Adoption!? Abortion!? But I want my baby! I had tried for this baby! I had
suffered 3 miscarriages to get to this baby! I deeply love this baby! I do not want to be rid of this baby!
But listening to the expectations for Laurel's life, I understood that adoption and abortion are not ways to be rid of your child,
they are ways to do better for her.
For Laurel, adoption was no help. I admit, I was terrified at the prospect of raising a child with severe disability. Terrified that she
would take more from me than I had to give, leaving my healthy daughter, my marriage, and myself deprived. Putting her into another
mother's arms would relieve me of this, but it would spare Laurel none of her suffering.
Hub and I were silent for a long time as we sat in commuter traffic on our way home from our full day at the hospital. Finally, I
found some words. "He said she might be stillborn." I could barely get it out."If only!"
I begged Hub to tell me what he wanted to do, not to say what he thought I wanted to hear, but to tell me honestly, what did he want?
He granted me this wish, generously saying the word that had been screaming in my head ever since our meeting. Saying it first
so that I didn't have to. "I want to call the OB and see if abortion is an option."
With that, hub threw open the doors to the prison of my despair and let me free into the fresh air and sunshine. The chaos of my
anguished selves faded away, and all that was left was that central me, full of wisdom and grace and peace. For the first time in 48
hours, I knew exactly what to do. That is how it feels to find the choice that you can live with. I can live with killing my unborn
daughter. I can not live with torturing her.
We didn't know if it was an option. I was well into my third trimester, and my own specialist OB at a huge hospital in Boston didn't
know where to turn for this. Her go-to doctor was assassinated by a domestic terrorist two years ago. Dr. Tiller. This is the situation
I found myself in. A situation in which I needed help, but someone who calls himself pro-life had murdered the only person who might
be able to offer it.
Fortunately, there was one other doctor who could help my family. Barely.
We got the call at 6:30 that evening. Our original inquiry had required some leg-work. My OB talked fast.
"If you want to pursue the abortion, there is one doctor who can help. I'm so sorry. You have to book your appointment as soon
as we hang up. You have to be on a plane on Monday morning. You need to show up for your first appointment on Tuesday with
$25,000 up front. You can back out at any time before the procedure begins. You can turn around and walk away. But you can't wait
another day. The procedure is four days long. It has to be complete by Friday. That's the last day it's legal and this is the only clinic
that can terminate so late for matters of fetal health."
The clinic was going to close for the weekend in minutes. Hub and I didn't need to think about it any more or talk about it any
further. We knew this was our only chance. We made the choice that we could live with.
Perhaps it strikes you that the stakes were very high, that the impediments were monumental, that this might have been some
kind of hardship for my family. Yes. Yes to all of that. There was nothing easy about this. But I will tell it to you straight: I am a
mother, and I would do anything in my power to save my child. Even when it hurts. Even when it stigmatizes me. Even when it feels
impossible. That's how the most difficult situation I've ever faced, the hardest thing I've ever done, was also the clearest choice.
Other parents might make other choices, but I believe we all do everything we can to save our children. We know them better
than anybody. We love them more deeply than anybody else possibly could. We look to our core selves, and we make the choices
we can live with. Mine was nothing special.
Over the coming weeks, I'm going to write more about this. I will share some details. Perhaps some of my other selves will step
up and have their say, too. There's a lot going on inside of me, after all.
I'm starting today because it is the 40th anniversary of Roe v Wade. The 40th anniversary of a court case that protected my
safety and my child's peace, and I am so deeply grateful for it. There is so much more progress to be made for family freedom, for
humane and careful choices in the most difficult of circumstances. But today I want to thank those who have spared me by giving me
a safe and dignified option.
Of all the intense and important feelings I hold after my abortion, gratitude is the greatest.
Editor's note: Many thanks to Kate for permission to share her story and link to her blog. Her story is a courageous one that we
can all learn from. Thank you Kate. Peace and healing.