Second Half of Pregnancy Overview
Parents are never prepared to hear the news that something is wrong with their baby. My nightmares and reality were identical after receiving Eloise’s diagnosis. Pregnancy is such a beautiful thing, and I felt like its beauty had been robbed from me. I’ve never experienced such overwhelming sadness. My child, the baby in my womb, had a grim diagnosis. Words like “lethal” and “incompatible with life” rang through my head. Time is harsh — it doesn’t slow down or wait for you to catch up but instead goes on as if nothing has changed. Everything had changed. I became too familiar with anticipatory grief for my motherhood journey and my baby’s life. But because time goes on, my life also went on. I was taking graduate classes, preparing my classroom for a new school year, making maternity sub plans all while going to multiple doctor’s appointments each week and grieving my idea of normal parenthood. How does a mother deal with all of that? I had several coping strategies, which I discuss below, and I also tried to honor and prepare for Eloise’s life.
Coping strategies:
Detachment
I felt detached from myself at many of my doctor’s appointments. It was as if I watched myself learn the news of Eloise, get the ultrasounds, and talk with the doctors. It’s a bizarre feeling to physically be in a situation holding my notebook and taking notes while also feeling like I’m somewhere else watching my life play out in front of me. This feeling wasn’t exclusive to appointments. When I saw my reflection in the bathroom mirror, I oftentimes didn’t know who I was. I remember looking in the mirror and telling myself any basic truth to ground me in the present. I would say things like, “I am Rachel. My address is … I am a mom. I am Eloise’s mom.” I still struggle with detachment, and I continue to work on grounding myself in the present.
Distance
My ability to feel emotions ebbed and flowed. I felt guilty as my emotions ebbed, as if I were disconnected from Eloise when I lost the ability to cry. I felt most connected to Eloise when my tears flowed, as if my crying brought me one step closer to knowing her. I agonized over all the details of Eloise’s diagnosis, and at some point I had mulled over all the available information, scenarios, and outcomes. Since we opted not to get an amniocentesis, our knowledge was limited while I was pregnant, and we wouldn’t learn more until after Eloise was born.
Distance has always been one of my go-to coping strategies, and it’s usually an unhealthy tactic used to avoid some kind of emotion. However, during the latter half of pregnancy, distance was a healthy choice for me. I found myself spinning over the details of Eloise’s diagnosis and eventually ran out of energy to spin. Many situations in life come with action steps or some level of control. There were no action steps. There was no control. I tried to process the unknown, and the unknown is unknown. When a scary thought was on repeat in my head, I had to shift my focus to other things, like distractions. Eloise’s diagnosis was all consuming, but I had to find ways to take breaks from thinking about it so that it didn’t totally consume me.
Distraction
My graduate classes and classroom prep served as distractions for the rest of the summer. The beginning of the school year typically flies by, and it went by even faster while I was pregnant. I wanted to set the class up well for my maternity sub, and I also thought I would return to this group of students at the end of my twelve-week maternity leave. I felt the pressure to establish relationships with my students, master routines and procedures, and create a maternity leave binder for my sub. Honestly, I welcomed this distraction. I spent the last half of my summer devastated, and my mind needed the emotional break.
Protection
It’s hard to hear sad news, especially about a baby. I wanted to protect others from the intensity of my situation. I tried to spare others from having to react on the spot, and this spared myself from the awkward silence mentally filled with wondering how much more I should say or explain.
For a long time, I couldn’t talk about Eloise’s diagnosis because my voice shook every single time I tried to explain it. I was also hurt by some people’s responses. After sharing our situation with a couple from church, they went on to tell us how wonderful it was to have daughters. The father fondly recalled the pride and joy he felt walking his daughters down the aisle on their wedding days. As he shared, I fought back tears as I wondered if Zach would ever get to walk Eloise down the aisle on her wedding day.
I quickly realized I needed to set up boundaries for the sake of my wellbeing. I limited the ways I shared Eloise’s diagnosis. I texted friends and family members. I spoke with my superintendent and principal at work but sent a mass email to the rest of my coworkers. I chose not to share on social media until after Eloise was born. I took breaks from social media. I remember scrolling through my news feed on Facebook and thinking, “Only a few of my friends have children with special needs.” It made me feel more alone in my experience, so I logged out.
It’s important to recognize your triggers and take steps to protect yourself.
Eloise’s Life – Honoring and Preparing:
Honoring Eloise
In the midst of coping and grieving, my number one priority was to honor Eloise’s life. Zach and I chose to do many things we would do for a neurotypical baby. Of course, the thought crossed my mind… what’s the point of all of this if she doesn’t live? But I didn’t care. Eloise was our baby. When a child receives the “incompatible with life” diagnosis, people sometimes treat it like a death sentence; I fought hard against that. I didn’t know if I would ever meet Eloise earthside, but I knew she was very much alive in my womb. We found out the sex of the baby and gave Eloise her name, we finished her nursery, there were baby showers, and we bought too many baby girl outfits. Yes, we created a nursery for Eloise, but there were weeks I had to close the door to her room because I couldn’t stomach the thought of her never sleeping in her crib. Yes, I had baby showers but kept the packaging knowing I might make many returns. Yes, we bought and washed many outfits for Eloise, but I didn’t get anything past the three month size. So yes, while we chose to go through with many typical activities, those activities came with great tension.
Preparing for Eloise’s Birth
November 11, 2019, was not only Eloise’s due date, but it was also my finish line. It was the last thing I could plan for. I wanted to meet Eloise so badly, but I also felt scared for what happened next. I think all parents feel this to some extent — the not knowing how life will change after the birth of a child. This feeling is heightened for parents who know something is wrong with their baby. I’ve always been a planner, and it’s a weird feeling to plan for an event with an unknown outcome.
I followed the apps and bought books to prepare for parenthood up until finding out her diagnosis. I realized Eloise was going to do her own thing, so I did my own thing to prepare for her arrival. Eloise didn’t follow the apps that show parents the size of the baby. You know, my baby is the size of an avocado, eggplant, pineapple, etc. I stopped looking at the apps and haven’t touched the parenthood books. Instead, I spent my time preparing for her birth. If shortly after birth was the only time I got to spend with Eloise, I wanted it to be precious.
- I slowly added songs to a playlist I planned to play during labor. The songs brought me comfort, and I’ve continued to add songs that remind me of Eloise.
- We read the Jesus Storybook Bible to Eloise. I wanted her to hear about Jesus in case she went to heaven soon after birth.
- We asked friends to set up a meal train for us. We asked for a combination of gift cards and homemade meals.
- We toured the labor and delivery unit and the NICU so that I understood exactly where Eloise would go after she was born.
- We took a Lamaze class to educate ourselves on what to expect during labor.
- I worked with my maternal fetal doctor, OB, and doula to create a beautiful birth plan. I knew there was a higher risk of complications during labor, so I framed my birth plan as care requests. Ideally, all of my requests would be met, but I knew I might have to let go of some.
My last directions were to remind the medical team to get Eloise’s cord blood after she was born. This was the blood that would be used to determine the cause of Eloise’s holoprosencephaly and would save her a poke. This was the thought that concluded my planning. I couldn’t plan beyond asking for her cord blood in the mint and purple tubes.
Let me be clear in saying, there is no right way to cope or grieve. I’ve had healthy habits and unhealthy habits, and a coping strategy that works in one moment isn’t guaranteed to work in another. I’m sharing my own experience with you, but this post is only a snippet of my coping and grieving. Also, honoring a baby’s life takes a great deal of emotional effort, and each decision is deeply personal. There’s not a guide on what to do; in whatever way a couple, mom, dad, or family chooses to honor a baby’s life will be perfect for that baby.
If you are in this situation, I’m sending you all my love.
