Last spring, my husband and I found out that we were pregnant for the first time. Like most parents, we were awestruck and overjoyed about the prospect of bringing new life into the world, but also overwhelmed. When we went into the dark room for our first ultrasound at 8 weeks, the nurse quickly found the heartbeat and we saw our baby moving around on the screen, but after just a few seconds she left to go consult with the doctor. The doctor was very honest and compassionate in explaining that our baby had a fatal development defect- a problem with the skull called anencephaly. Babies with this condition never survive long after birth, usually just a few hours.
John and I had already agreed that if we had a child with any kind of disability, we would accept it and figure it out. We didn’t even know it was possible to be in a situation where the baby would likely make it to term only to die shortly after birth. When I read more about anencephaly online, both medical articles and personal blog experiences, I saw that some women prayed for miracles and others prayed for miscarriages. There are no recorded cases of long-term survival with anencephaly, and the ultrasound images were clear, no room for error in the diagnosis. I didn’t know what to pray for, or how to explain to people why we chose to carry the baby, but I knew I wasn’t carrying to term out of some remote hope for a miracle. I believe that God can and does work miracles, but I think it is misguided to root our faith in the hope that God will take away our suffering with a miracle, rather than to trust in the miracle of the presence of Jesus through our suffering.
A few nights later when I couldn’t sleep, I remembered a verse that had struck me as an odd sort of mystery years ago in Bible study. I opened my Bible and kept pondering this verse throughout the pregnancy: “Continually we carry about in our bodies the dying of Jesus, so that in our bodies the life of Jesus may also be revealed” (2 Corinthians 4:10). What does it mean to carry about in our bodies the dying of Jesus? Didn’t Jesus already die and rise from the dead? Why would we be called to carry something that is dying? Isn’t our God the God of life? The image always seemed odd to me.
And there I was, carrying in my body a baby that I knew was dying. It wasn’t just that my baby was going to die after birth; the baby was, in a sense, already dying. The neural tube (the precursor to the spine and skull) was supposed to close at week 4 and it didn’t. By our 8-week ultrasound, the brain tissue was still growing and developing, but over the course of the pregnancy it would deteriorate due to exposure. By the time of birth, babies with anencephaly often only have a functioning brain stem left for basic autonomic functions (breathing, heart rate, reflexes, some sensory perception). The doctors didn’t know enough to tell me whether my baby would feel pain.
We started calling our baby Frances because it could be a male or female name and we didn’t want to wait until week 20 for a name. At the 20-week ultrasound when we found out that Frances was a girl and saw her beautiful face for the first time, we decided on Noel as a middle name because her due date was Christmas Day. Advent took on a new meaning for us. I took a course on the Theology of Aquinas in the fall because I've been interested in Aquinas for a while, and I get tuition remission at Loyola since John is a professor there. Naturally, I wrote my term paper on the nature of death and suffering. Frances Noel and I spent many days together pondering the question by the fire. Something that I love about Christianity and especially the Catholic faith is that it does not shy away from suffering. The modern day “problem of evil,” is a common reason that people give for being agnostic or atheist. How can a good God know that the evils we see in this world would happen, and choose not to stop them even though he has the power to do so? This is not a question that early Christians gave much thought. The evils of death and suffering were expected, even promised to followers of Jesus if you read the Bible closely.
There are many arguments that can be made on death and suffering, and I don’t want to repeat my term paper here, but I will share the most compelling answer to the problem of evil that I have found. Aquinas explains that “this is part of the infinite goodness of God, that He should allow evil to exist, and out of it produce good” (ST 1.2.3 ad 1). Tolkien states it more poetically in the Silmarillion, a prequel to the Lord of the Rings. He begins with an imaginative retelling of the creation story in Genesis in which God, rather than speaking the world into being, sings it into being. God invites his choir of angels to participate in the song. Satan desired greater influence than the part was assigned to him, so he introduced notes of discord and began to sing his own song. God nevertheless weaves the noise of chaos into a complex harmony with solemn undertones and greater depth of beauty that is even more glorious than the original song.
This sorrowful but deep and mysterious sort of beauty is the best way I can describe what giving birth to Frances was like. It felt like time had stopped ticking and instead flowed into a raw and beautiful song. In the days leading up to the birth, things around the house were chaotic. Between our families and my best friend, we had 12 people, three dogs and our cat staying at the farm. A lot of our pipes froze in the cold snap before Christmas so we were down to one bathroom and no hot water to do the dishes, and it was hard to keep the house warm enough with just a wood stove. The day before I went into the labor, everyone came together to make sure there was enough firewood for the house, the animal chores would be covered, and they even took a list of projects to work on while we were at the hospital.
The delivery went as well; we got to walk the Saint Francis prayer garden and go to daily Mass in the hospital chapel while I was waiting to go into labor. Baby Frances was born on December 27th and died the next day. She was very weak at first, the nurse couldn't find a pulse, but she spit up and started breathing when John picked her up to do an emergency baptism. One of the first things Frances did was grab onto the St. Thomas metal that my dad had given me when he died. She met her grandmas and her aunts and uncles, and despite being delayed by a blizzard, her grandpa got to hold her before her burial. We cherished every breath in the short time we had with her, and her breaths got farther and farther apart as the time of her death drew near. Since I had carried her for nine months, I gave her over to John to carry her home.
We had a small funeral in the barn and buried her at the farm the next day. When we came home from the hospital, the plumbing was fixed, along with other things around the house, our bedroom had finally been repainted, and a big family meal was waiting for us. Everyone played a part in funeral preparations the next day. The sunrises and sunsets were all amazing during the days of her birth, death, and burial, and everything was more beautiful and peaceful than we could have hoped for.
I wouldn’t have chosen any of this if you asked me how I wanted to bring my child into the world when I first found out I was pregnant. I had no idea how I was going to get through it, but I trusted, and felt closer to the kingdom of God than I had from any other experience on this earth. I’m sure Mary wouldn’t have chosen to give birth in a barn, and Jesus made it clear in his prayer to the Father in the Garden that death by crucifixion wasn’t his first choice either: “Not my will, but yours be done” (Luke 22:42). To be clear, I don’t believe that God directly wills for any evil to happen, most of the time he simply chooses not to intervene when he could. Nevertheless, God somehow brings goodness out of evil that is mysteriously greater than what could have been had the evil never happened.
Because of Frances, I realized that to carry the dying of Jesus means to hope in the Resurrection. I didn’t feel the need to cultivate the desire for resurrection until I felt death. When we walk down to Frances’ grave, I am reminded that a part of me is buried there. Her soul is in heaven, but her flesh was once my flesh, and now it is buried. She is a small and fleeting contribution to the earth, but in the Communion of Saints she is eternal. We carry the dying of Jesus every time we care for those who are disabled, or poor, lonely; when we make sacrifices for those who cannot repay us (Luke 14:12-14). This is how the life of Jesus is revealed: resurrected into eternal life with wounds gloriously transfigured. When we pray by the grave these quiet winter mornings, the first birds remind us spring is coming; we hear the song of life slowly returning to the forest. We await the resurrection. Frances is the reason that I more deeply know what I mean when I say the Creed in Mass every Sunday: “I look forward to the resurrection of the dead and the life of the world to come."
