Red State Blues

Posted on Posted in Neural Tube Defects, Spina Bifida, Stories

By Gracie’s Mommy

"We lived in the Bible Belt after all, and had done something 'shameful' and 'sinful' in the eyes of the locals."
“We lived in the Bible Belt after all, and had done something ‘shameful’ and ‘sinful’ in the eyes of the locals.”

I used to be a registered Republican, not because I completely identified with their ideals, but because I identified with them fiscally. Money. Money was important to me. I watched my dad work very hard to keep his employees employed in his small construction company while he took home less than half of his earnings. He struggled to pay his mortgage on a small three-bedroom house and to support his family while his employees bought new cars and went on vacations. That wasn’t fair to me, so when I turned 18 I registered as a Republican and voted Republican.

I have never fit in, though. I have always been pro-choice and pro-gay marriage, two very unpopular social beliefs in the conservative world. Being born and raised in a small town in California, it was easy to maintain sides of myself: fiscal conservative and social liberal. Although I thoroughly believed in a woman’s right to choose what was right for her own body and her family, I never ever imagined I would terminate a pregnancy for any reason. This was only because I had no idea that devastating poor prenatal diagnoses existed.

I was naive, I was ignorant, and I was so wrong.

My husband is an active duty military member and has a very high-stress and very important job. I married him knowing we would move all over the country and possibly the world. I imagined the independence and worldliness we would gain by living in different areas, but I couldn’t imagine the virtual prison the center of America would become for me.

I let my angel leave her broken body on July 19, 2012 due to spina bifida (myelomeningocele), hydrocephalus, cystic hygroma, and other brain deformities. I’ve never been so utterly brokenhearted in my entire life. She was my daughter, my first pregnancy, and I let her go. I chose to let her go. I will never regret my decision because I know in my core that it was right, but I will always grieve my Gracie, my love.

Sometimes I feel I have lost myself as a person, but then I remember what she taught me about life and love. I appreciate life so much more and what goes into creating it, and I have a much greater capacity to love. She taught me these things after only 19 weeks and 5 days together.

Still, what I went through just because of my geographical location is hard for me to understand. The day the devastating news was confirmed, my husband and I held each other and cried and cried and cried. After we caught our breath, we had both come to the same conclusion: to spare Gracie a life of suffering.

I was inconsolable, so my very supportive and brave husband figured out what we had to do. He found out a termination so late was illegal in this state and was referred to a place eight hours away in a different red state. I immediately felt betrayed by this stupid state we live in. My husband fights for your rights, and he also fights for mine; yet we were being sent away like we were criminals.

I don’t know where I imagined the procedure would take place, but I can tell you my many nightmares had not prepared me for this red-state clinic. I was surrounded by teenagers and young women packed like sardines in a converted office building. They were joking around.  I, on the other hand, was breaking down. I was crying and convulsing as I tried to fill out my paperwork. The employees of this place were seemed incredibly calloused. They never once asked why I was there. I felt like screaming that I was absolutely in love with my daughter, but she was so so sick. But I don’t think anyone would’ve cared.

I had to jump through many hoops that day. I had to meet with a counselor before I was allowed to see the doctor. “Counselor”- what a joke. I was hoping I was going to speak with someone educated in psychology or something, but instead she was a receptionist who read from a  script to keep from getting in trouble. She was required to tell me how my baby was going to die. That is what they meant by “counsel.”

Assuming I hadn’t been talked into of changing my mind yet, the next hoop was an ultrasound. Maybe someone who couldn’t bear to see a living little human moving around their belly would be deterred by being forced to look, but I was thankful I was able to see Gracie again. She was moving (I wasn’t educated enough to know that her movements were very unnatural) and I cried my eyes out.

The doctor was very confused as he tried to take fetal measurements, until I told him I was there because my daughter was sick. It was at this ultrasound that I learned the bones in her legs had become deformed.

The final hoop was being made to wait 24 hours to “think about my decision.”: It was like physical torture. I can’t express the utter despair caused by being forced to wait. If lawmakers were trying to get me to kill myself from within, then they were doing a good job.

I won’t go in to detail about my procedure because its is particularly hard to think about, but I remember feeling like I deserved this treatment. Why should I be allowed a hospital setting? Why should I be allowed compassionate caretakers? I didn’t feel I deserved any of that. Now I know that I did deserve those things. I didn’t break the law. I wasn’t a bad person. I was a mother who only wanted to save her child from pain and suffering. Isn’t that what all mothers want?

I remember returning “home” to our red state and feeling afraid of this place. We lived in the Bible Belt after all, and had done something “shameful” and “sinful” in the eyes of the locals. I can’t even tell you how many anti-choice billboards we passed or bumper stickers that seemed to be directed squarely at me. They knew. They knew what I had done and they were going to hurt me or my husband. They were going to picket in front of my house, maybe they would even have pitchforks.

I learned, after my procedure, that my perinatologist had not told me the whole truth about my little girl. He had led us to believe that she would live a tortured life, but would absolutely live. He offered termination as an option for women who “couldn’t handle” a diagnosis like ours. We made our choice based on the information he gave us. Later, I found out that he was relieved that we had chosen termination because our daughter was likely never going to survive her birth. I told my OB, who was very supportive of me, that I never want to see that specialist again because he lied to me and pushed his Southern Baptist beliefs on me. She explained that he had actually wanted to suggest or advise me to terminate my pregnancy, but was afraid to do so. He feared that I was a crazed Bible-thumper who would ruin his career by spreading around that he had been promoting abortions. The man feared for his job.

So, this is my punishment for living in a red state (even though the military chose this location for us). I had a doctor who couldn’t have a candid discussion with me about my options because he wanted to protect his career. The anti-choice movement has impeded his ability to tell his patients the entire truth; in other words, someone else’s nose was in my medical business. What if I had decided to keep her? What if I had decided she was going to be our only child and I was going to dedicate my life to taking care of her, only to have her die at birth? How would I feel then? I know how I would feel. I would’ve felt like I had been selfish to allow her to go full term only so she could really feel the agony of her death. That was an unacceptable choice that I was almost tricked into making.

I still feel isolated by my choice, but not trapped by it. I know that most people in my state would not agree with our decision no matter the circumstances. I feel it’s unfair that I’ve been pushed into hiding.

But I am okay. If there is a judgement day for me and I am punished for my decision, then God is cruel. I have a hard time accepting that to be the case, though, because God (if he exists) to me is compassionate and forgiving. I know I’m a good person and I don’t deserve to be shunned or lied to for the sake of someone else’s beliefs. What matters is that my daughter never suffered and I’d like to think she can hear me when I tell her I love her.

P.S.- I can’t wait to get the hell out of this state!

 

 

photo credit: quinn.anya via photopin cc