It's been nearly 7 months since we said goodbye to Grace Pearl, and in that time we have met so many other people that have been through similar situations to our own - far more than you'd ever think, which tells you a lot about the stigma around this that a lot of people have to make these sorts of choices, but are afraid to share because of how condemning society can be. And I get it... there are people out there that 100% are against abortion, even in our situation, and yes, I do encounter them.
How I feel about that is another post for another time, but I always want to ask what people that say we made the wrong choice and shouldn't be able to do so would do in my amazing friend Darla's situation. And I don't mean this in an antagonistic way: I truly wonder what people would do in Darla's impossible situation. If her family's case isn't one that compels for the need for smarter, more inclusive laws and increased awareness and compassion, I don't know what is.
Thank you so much, Darla, for sharing so bravely.
I Tell Their Story
One year ago, we learned some of the most devastating news parents can learn. My husband, Peter, and I sat in the doctor’s office after our routine 20-week anatomy scan discussing our dinner plans. The twin girls I was carrying were craving Mexican food, I claimed. So we planned on going to famed local Austin eatery, Chuy’s. After over an hour and a half of waiting for our doctor to come in after the ultrasound – a rarity for our doctor – he walked in somberly and asked me to move from the examination table and sit next to Peter. I knew we were in for bad news.
The rest of that appointment is a bit of a blur.
“I’m surprised she’s still alive.”
“Encephalocele… might be open… very small head… possible missing digits… large cleft lip and palate…”
“Other baby is healthy.”
“Referral to a specialist… only one doctor in town who will perform the procedure if there’s no hope…”
“I’m so sorry.”
He called the specialist’s cell phone from his own cell phone while we sat across from him bawling. It kicked off a wave of appointments, including a trip out of town on a Saturday for a four-hour ultrasound to make certain what we were told was actually going on. It was.
Our baby B, Catherine Sophia, had essentially a terminal diagnosis. Microcephaly, an open encephalocele that was allowing brain matter to leak out and was causing ventriculomegaly, an underdeveloped cerebellum and prefrontal cortex, and a large cleft lip and palate were her major issues. That she had survived this long was unbelievable, but she would not survive to make it home with us if she lived through delivery. And she posed too big of a risk to her completely healthy twin sister.
On June 22, 2016, we said goodbye to her. I clutched the panda bear we had purchased for her at the Vienna zoo the day after we learned of her conception (the girls were donor egg babies from the Czech Republic – a story for another time, one I love telling). I cried, not from any physical pain, but from the grief that had already settled in 12 days before when we received her diagnosis.
I walked around in a cloud of depression, grief for months. I delivered the girls in September and lost myself in the role of mother to a newborn. My beautiful Olivia Adele brought me such joy, but still, as I looked at her, I found myself torn between delighting in her and missing what should have been.
When Olivia was five months old, I realized what I needed to do. While Catherine may not have been meant for my arms or for this world, her story was. She was meant to help bring her sister into this world, and she was meant to open eyes.
So I took it upon myself to tell her story. I shared it in a large, almost exclusively cause-friendly Facebook group first, and then got up the courage to write an article that I guess you could say went viral. To see people sharing my words, commenting on my life, was surreal. Comforting and angering at the same time (never read the comments, right?).
But my daughter, the one who was never going to have a chance to make her own mark on the world on her own terms, was making a difference. People who were pro-life were saying they’d never thought of situations like ours, they’d never thought of gray areas before, and that my children had made them think. Because I had told her story, people’s eyes were opened.
Along the way, my sweet girls have helped me find myself. Olivia has helped me truly see the mother’s soul in myself, the soul I always thought I had but had become afraid I’d never get to express. And Catherine has helped me dig deep and find the survivor and the fighter within myself. Having only been the child in the parent/child relationship up until this point, I never knew that a parent could be changed by the relationship. But they can.
I told a reporter once, after she apologized for making me relive our trauma, that I would tell my daughters’ story every single day for the rest of my life if it opened even a few eyes. And I will. I will continue to tell their story because as long as I live, I will make sure that they do, too. Both of them.
What would you do in Darla's situation, if you think you would never support pregnancy termination, even in Grace's situation? What if you were pregnant with twins, and learned one would never live, and was taking energy, resources and space from the other one, thus endangering her? It's hard for me to even think about, but I can't just stop there and think about something else. The laws in our country very much effect people like Darla and myself and our options in these situations. Apathy or avoidance isn't a choice for us.
You can find Darla's Facebook page (and link to her blog) here, and if you'd like to make a donation to NARAL Pro-Choice Texas (a state in great need of support for reproductive rights, and where Darla has been holding a fundraiser on behalf of Catherine Sophia) you can do so here.