Is it completely cliché to create a blog after receiving life-altering news? Probably, but I’m doing it anyway. I’ve actually been toying with the idea for months now. I’ve always enjoyed writing and my children are wildly entertaining. I've had the title "Sticky Doorknobs" picked out for a while. Up until recently my life has been like a comedy of errors and who wouldn’t want to laugh with me about it? But since our daughter’s diagnosis, I’ve found myself wanting to write for different reasons. To update friends and family about this pregnancy and our baby girl, to have a place to process my feelings and let others know how we’re dealing with all of this (because I know people are curious), but most importantly to allow God to use our situation to bring glory to His name. And so I will blog.
I’ll start with something that I think is important for people to know. For several months now, I felt that the Lord was preparing my heart for some kind of suffering. I knew it by the way the Spirit whispered to me as I read Ann Voskamp’s One Thousand Gifts, giving a name to what I now often refer to as the “hard eucharisteo.” I knew it through blogs I came across, outlining mother’s stories of grief due to children they had lost. I knew it through Scriptures that I’d been reading and testimonies that were shared personally with me. I just knew. And for the past several weeks, I felt like this suffering, this trial, would somehow pertain to this pregnancy. It wasn’t necessarily a feeling of dread, and it wasn’t something that I even shared with anyone. Just a knowing, a preparing of my heart that God was gracious in giving me.
So I knew that when I scheduled my 20 week ultrasound I would need to have my husband there with me. I knew we’d need to have a babysitter for the kids. And I knew as soon as the sonographer clicked on the screen and our baby came into view and her first words were, “Um…when was your last ultrasound?” that it had come upon me. I answered, “Not since I was seven weeks. There’s something wrong, isn’t there?” I know that ultrasound technicians are usually not permitted to give information about the scan they are performing. For whatever reason, however, mine immediately told us what was going on, for which I am grateful. “I’m seeing some incompatibilities,” she said slowly. “Her skull and brain have not formed properly. They’re… just not there. I am so sorry.” Onan and I grasped hands and began crying as she continued with the scan, apologizing over and over again to us. “It’s okay,” I told her through my tears, “God has been preparing me for this.” I silently cried out to Him. “This is it. The hard eucharisteo is here. Please give me your strength. Please help me to suffer well.” A few minutes later, she asked if we wanted to know the baby’s gender, and we did. “It’s a little girl,” she told us. I responded, “I knew that too!” Out of my four babies, this is the first time I’ve been right about the gender.
After the ultrasound was completed, we went into an exam room to wait for my doctor. My husband wrapped his arms around me and prayed Romans 8:28 aloud. A nurse came in to take my blood pressure and it was obvious that she had been informed of our situation. She was kind and quick, not saying much. When my doctor came in, she gently explained the diagnosis more fully. She told us that this baby would not live outside the womb, but would continue to grow as long as she was in utero. After quickly assessing our family medical history and asking about my folic acid intake (to which I answered that I’ve taken a prenatal vitamin every day for pretty much the past four years), she assured me that this was just something that happens quite randomly—not usually caused by any genetic problem and not something I could have prevented by doing anything differently. She presented us with our options (something legally required of her): termination of the pregnancy or continue to carry, probably to term, only to have the baby not survive for long after birth. She told me that we would meet with a specialist, a high risk OB whose office was right next door. She was going to get us the next available appointment, which happened to be 8:15 the following morning. We left, still crying.
I’ll never forget the car ride home. Honestly, I considered termination for a solid couple of minutes. It just seemed easier. I sobbed to my husband, but just as much to the Lord, “What kind of a choice is this? End the pregnancy when she’s alive or carry her for the next 4 months knowing that she’s going to die after I give birth anyway? How can He ask this of me? It’s just too much.” And it was. I had prepared myself for there not to be life. That was the worst scenario I could come up with. But this…this was just wrong. Unfair. Too much to bear. Thankfully, the Truth about who God is, what His Word tells me, gradually began to seep into my heart. Scripture that I had known for years flooded my mind, this time, with new meaning. As I recalled these verses and affirmed them, I felt a comfort, a sustaining peace deep within my soul that simply cannot be described. This, coupled with my husband’s quiet words, “I think we need to try to enjoy her as best we can for as long as we can”, changed my perspective. I knew that this baby girl belonged to the Father—and I placed her life in His hands. When it began, and when it will end, is up to Him. I saw the pregnancy--these next fleeting and precious months with her--as a blessing, rather than a burden.
The next morning Onan and I sat in the specialist’s waiting room, eyes bleary and heads throbbing from the lack of sleep and near endless crying. The mood in the room was somber and I realized how much I’d taken my three previous uneventful, low risk pregnancies for granted. The specialist we saw was serious, the all business type, which seemed fitting. He performed the ultrasound himself and told us, “The first question I know you’re asking is whether or not we can fully determine your baby’s condition. I can tell you with certainty that we can. We are looking at clear, diagnostic pictures here, and there is no doubt about what we’re seeing. The second question I know you’re asking is if this diagnosis will be fatal for her. It will be. It will be fatal.” He asked us into his office to discuss things further. For the first time, we were given the name of our daughter’s condition and I repeated it after him, scribbling it onto my notepad. “Anencephaly.” I had never heard of it. Once again we were presented with the option of termination. I explained that this would not be an option for us, and he was very supportive. “Many women choose to carry,” he told me. “We will treat this just as we would any other pregnancy. You will continue to see your regular OB and have appointments here as well.” He answered the questions I had written down on my notepad prior to the appointment. “Will she continue to grow normally while in utero?” Yes, because her lower brain is functional. “Will I be able to have a normal labor and delivery?” Yes, and the hospital is fully equipped for such a birth. “What is her life expectancy outside the womb?” Minutes, maybe hours, not more than a few days. He likened her being in my womb to “life support”—as long as she was inside, she would grow normally. As soon as she is out, however, that support is no longer in place. Without any upper brain function, she cannot live.
When we arrived home from the appointment I got online and began researching anencephaly. Thankfully, I came across an excellent site before I opened up the wiki page (which I do not recommend doing). Anencephaly info is dedicated to parents who choose not to terminate and is full of information regarding everything from the definition of this condition to what type of infant caps best fit the babies who are born with it. It also includes several personal testimonies from parents. This has been hugely encouraging to me.
The overwhelming support we’ve received from our friends and family is nothing short of astounding. Prayers, cards, email messages, meals—it all means so much. There are several women in my life who are able to identify, at least in part, with what I’m going through. My pastor’s wife lost a baby girl when she was three months old. One of my dearest friends gave birth to twin boys who lived for only four hours. I have numerous close friends and family members who have endured miscarriages. I know that God has placed these ladies in my life for such a time as this, and they weep with me as those who understand.
Just a couple more things that I want to make clear before I close out this very, very long first blog post. Onan and I wholeheartedly believe that God is fully capable of growing our daughter’s skull and forming her brain. He is Creator of the universe, God of miracles, healings, resurrections. We know that He is able to heal her, if He so chooses, regardless of any specialist’s diagnosis. But I want people to understand that if he does not, if he chooses instead to heal her by taking her, this is also a miracle. A life with Jesus, without this sin and sickness and sadness—a perfect and whole life in His presence—shouldn’t this be our hope for her? For all of our children if it is God’s plan for them? The Lord changed my perspective on death a few years ago and it is no longer something I fear for myself or for my loved ones who know the Savior. This life is a vapor. I know that I will have an eternity with my daughter, even if I will mourn not having her on this earth.
We’ve received several comments along the lines of “God is still good—even if it doesn’t seem that way to you right now.” While I completely understand the well-meaning sentiments behind such statements, I want it to express that we know God is good. Now more than ever. I’ve experienced the God of all comfort in a way that I didn’t even know was possible and have fallen more deeply in love with Him because of it. While I have no doubt that the hardest days lie ahead, that there will surely be times of questioning and great sorrow, I will not stop believing that God is good. That He is working all things together for my good. That he is sovereign, fully in control and loves me more than I can imagine. His plan is perfect and I’ve decided that it is far easier to trust him, lay it at his feet and give him my burdens rather than the alternative of worry, bitterness and anger. Please pray for me as I do this. I realize that what I’m saying won’t make sense to some people. If you don’t know the Savior, then I am certain this will sound like utter foolishness to you. That’s okay. I will continue to testify about what I know is Truth, praying that the name of Christ be magnified as I do so.