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.
4 comments:
Once again, an unflinchingly honest and amazing post, and a beautiful tribute to your daughter. You are so lucky to have each other.
I always get uncomfortable when questions like those are asked because...what are they inferring? Or do they even realize that it comes across that if you/I/we had known, that we could have "done something" about it?
I know that I got some incorrect counsel during my pregnancy, but the reality is that I'm GLAD I didn't know because now I know Malea.
I have always wondered what lawsuits like that are supposed to change. Would it make Willa healthier if you had known ahead of time? Unlikely, right?
After my son was born, we were overwhelmed by having a newborn, and I was sure that I had ruined not just my life, and his life, but also my husband's life by wanting a child, wanting to be a mother. As time has passed (he's 5 next week) I've realized he did devastate our life as we knew it, and that's not all bad. I feel he saved my husband's life by making it important to get help with his own issues because there was someone dependent on him. Unintentional consequences aren't all bad.
Beautiful post. It speaks the truth in my heart.
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