An Open Letter to Congressman Paul Ryan

by Shaker MB

[Content Note: Pregnancy loss; war on agency; institutional disablism; food insecurity.]

Dear Congressman Ryan:

I've had you much on my mind this election season. I've always been interested in politics and tried to advocate in my own small way for a better world for all of us, but this year I find myself more than just interested in the outcome of the election. This year, some of your comments stick in my head, and I find myself replaying them over and over as if they were stinging barbs meant specially for me.

I'm thinking about your vice presidential debate comments on abortion. By October 16th, you'd probably forgotten all about your own remarks, and you were probably praying for your running mate to demolish the president in that evening's debate. But I was thinking about your 6-week ultrasound, your beautiful bean of a daughter, because on that day I was in the hospital for an ultrasound myself, a first chance to get a look at my own beloved daughter, who at 16 weeks, would be much more than just a tiny bean on the screen.

I have a handsome son, who will be 10 in January. My husband and I have been trying for many years now to have another child. I've had three miscarriages, but God had not blessed us with a healthy pregnancy until now. You can imagine our joy at seeing those two little lines on the pregnancy test, our expanding hearts as the first trimester passed and our daughter continued to grow. You'd think I was excited for that ultrasound. But I wasn't. I went to the hospital in tears.

My doctors had scheduled this ultrasound urgently, because brand-new, innovative, highly accurate genetic testing had revealed that the baby I was carrying had a serious genetic disorder that causes developmental disability and other physical health problems. My doctors wanted us to have the opportunity to confirm the diagnosis, and to see if there were any other abnormalities. We wanted this baby more than anything, so when the genetic counselor had asked me, when we scheduled this testing, what my family would do in this situation, I had told her we would never consider terminating our pregnancy, no matter the results. We simply wanted the information to plan how to care for our child.

Easy for me to say. I had no idea what a positive diagnosis would mean for me, for our family, for our daughter-to-be. When the news came, we set out immediately, talking to friends who had raised or were raising children with disabilities, reading books, checking websites. We had no doubt that we would love our daughter. We just needed help figuring out what resources were available to help, what her life would look like over the long term. The college fund we had already started for her was no longer enough to meet her needs.

And do you know what, Congressman? What little we found made our blood run cold. Your proposals, your running mate's proposals, made our blood run cold. We're not rich people, but we're middle class and responsible. We have the resources to raise our children and love them until adulthood, and to launch them with an education so they can meet their own needs. But now we knew our daughter could never fully meet her own needs. We needed to plan not just for her childhood, but forever, for well past our own lifetimes. We learned that there are nearly no resources for adults with disabilities in our state or our country. She could not be guaranteed any kind of housing as an adult, once we can no longer care for her. If your proposals go through, or any version of them, we could not even count on health insurance for her. If Social Security goes bankrupt, or if you gut it, she'll have no income, and even left as it is now, she won't have enough to pay for her housing, her food. I cannot guarantee she'll ever be able to work for herself. If we could not provide for her ourselves, for her entire lifespan, all of her needs, we could not promise – or even realistically hope – that her basic needs would be met. I'm frugal and careful and I know how to save, but I'll never have enough for all that.

I imagined being an old woman, watching my grown daughter die for want of adequate health care. Watching my daughter become homeless, as I sat in a nursing home unable to help. I imagined my son or my future daughter-in-law or grandchildren resenting or hating my daughter for requiring their care – or simply being unable to care for her. For the first time, I thought I might have to have an abortion. Not because I couldn't love my daughter. Because I already loved my daughter, and like all mothers, I wanted her to have a decent life.

This is what was on my mind as I went to see her for the very first time, as the tech rolled her wand over my belly and the first photos of my daughter appeared on the screen. And I want you to know what I saw through my tears. It was no bean on that screen. I could see her little face, the beginnings of her gorgeous smile. I could see her perfect hands and feet, her fingers pointing. I could see the worried look on the tech's face as she tried to get pictures of her heart, her brain, her gut. The techs are not allowed to tell you anything about what they see, but if you watch their faces, you learn more than you want to know.

The doctor came in. My genetic counselor came in. My husband and I did not have the privilege of inventing nicknames for our girl. We had to pay attention. We took notes as they listed off the abnormalities the tech had carefully measured and recorded. We talked about cardiac abnormalities, brain abnormalities, bowel abnormalities. If she survived the pregnancy, which was unlikely, she faced a lifetime, however long it would be, full of pain. Pain that, because of her intellectual disability, she might never fully understand.

If you've never been there, Congressman, you have no idea what we felt. You have no idea how difficult the moral decision was that we faced. Figuring out what is "pro-life" in this situation is not easy, much less figuring out what is "pro-life" for whom. Is it pro-life to allow your baby to suffer through endless pain, if she even has the capacity to be born? Is it pro-life to fundamentally change the life of one child for another? Is it pro-life to bring a child into a world where modern medicine might deliver her into adulthood, only for her government to allow her to die in misery and suffering, with no health care, no food, no home?

I'm not Catholic. My church doesn't have an easy answer for this question. We are observant Jews. My faith is profoundly pro-life – in fact, it requires that any religious law be broken to save or preserve a life. But in my faith, even among the Orthodox of my faith, a fetus is not considered a person. Parents are asked to make "pro-life" decisions for all the living people involved, while respecting the spark of possibility that a pregnancy represents.

With our rabbi's help, with God's help, we came to believe that God had revealed this terrible, painful information to us at this moment so that we had the privilege of making what felt for us a humane choice and sparing our daughter and our son future suffering. And that is how I came to have an abortion.

You don't know anything, really, Congressman, about an abortion. You've never had one. I'm guessing you've never even seen one. Before this week, I was just as naïve as you. I was frightened, and I didn't know what to expect, even though some of my friends could probably have told me. A lot of women go through an abortion, after all. Did you know that 1 in 6 pregnancies in this country ends in a legal abortion? I didn't know. Women don't tell these stories, because they are afraid of your judgment, the violence they might incite, because you have made them feel guilty for making what seemed the best, most moral choice to them at the time.

So I'm going to close this letter by telling you about mine. Abortions are all different, and my experience isn't universal, but this is what it was like for me: I got excellent care, from one of this country's finest high-risk OB/GYN teams. They deal all the time with parents going through the loss of their babies, efforts to save their babies, parents trying to make humane choices for babies that come into the world less than whole. They are compassionate people who do not judge, because they know that the world is not as perfect as we would like it to be. My abortion happened with just two pills, one that tells your cervix to soften and open, and another that opens it just a little bit more. After that, everything that happened was a natural process, a labor like any other labor, like you went through with your wife, and like I went through with my son.

I labored in the hospital, on an ordinary maternity ward, with my mother, my father, my husband, and a team of wonderful nurses and doctors working diligently alongside me to support me. My rabbi came to pray for me. My husband and mother stroked my forehead and rubbed my back when contractions came. I took no pain medication. Nothing more was done to my body or my daughter. After many hours, she was born. She was not alive, she did not suffer, and as soon as she was out of my body she was wrapped in a blanket and given to me. I want you to know that she was beautiful, but there's no way I can help you to know the heartbreak that my husband and I went through as we held our daughter in our arms and wept at what we had chosen to do. There's no way we will ever feel settled about it.

I read a story once about a Mennonite missionary who visited a family in an impoverished nation in Africa. Birth control aid was not available there, you'll be happy to know, so the family had many more children than they could afford to feed. The time had come, in fact, when they had so many children that if they divided what food they had evenly among all the children, all the children would die of starvation. The missionary noticed that one child was ill – that she had white hair, and was much smaller than the others – and she asked what was wrong with that one. She was told that this was the child her mother had chosen to starve to death, that the others might live. Is that a pro-life choice, Congressman?

And yet, what other choice did that mother have? She couldn't let her whole family die. She couldn't kill her daughter outright. She made the best choice she could. I also made the best choice I could. What other choice did I have, really?

When I look at your policies for children, for adults with disabilities, for those among us, like my daughter would have been, who are vulnerable, when I realize that these policies may become the law of the land, and already have influenced our country in ways that have made us meaner, harder, colder, and more desperate, I feel something like that African mother. You have no idea what that feels like, and if your wife were pregnant with my daughter I'm sure you would have the luxury of being able to choose to have her, knowing that you – unlike me – could afford to pay for care for her, whatever she might need, for the rest of her life. I'm not wealthy like that. If I had a million dollars in the bank for my daughter, she might still have had a miserable life, full of suffering.

But if I could have guaranteed that the world would treat her decently, that she would have the surgeries she needed and enough to eat and a place to live for the rest of her life, I can tell you I would have taken the chance.

The world you are trying to build is not a pro-life world, Congressman. And you cannot call yourself pro-life.

Yours Truly,
A Grieving Mother

[Commenting Guidelines from Liss: Judging or auditing this author's decision to terminate her pregnancy will make this an unsafe space for her and is thus prohibited. This is a pro-choice space, and one does not have to agree with another person's choice in order to respect it. Please be considerate of the bravery and vulnerability it took to share this piece with this community.]