Part 5: Navigating the pregnancy anxiety rollercoaster

This is part 5 of a many part series. To follow along, you might first wanna read Part 1: Pregnancy loss after loss after loss after loss and Part 2: New Family Expansion plan and Part 3: What if this one is disabled, too? and Part 4: The results are in

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At 13 weeks and 1 day, I began feeling our this baby move.

At 13 weeks and 2 days, we found out that — as far as we could tell — this boy was going to be a genetically typical kid.

At 13 weeks and 5 days, Eloise fell off the couch and broke her leg.

And that sequence of events sums up this season. Two steps forward. One big step back.

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Right after I graduated high school, I took my first job. It was in the summer at a nearby camp for mentally disabled adults and kids. It took me around 2 seconds to figure out that I was in love with these humans. Their innocence. Their joy. Their straightforwardness. Their simple approach to life. As a result, I went on to take side jobs and volunteer positions with disabled adults for my entire University career.

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Fast forward to our 13 week anatomy scan with Eloise and her twin. The doctor kept measuring and re-measuring the size of Eloise’s neck folds. Finally, he turned to us, “I’m sorry to tell you, but Baby A has a higher risk of Down Syndrome. It’s still too early for an amniocentesis which will tell you for sure, but you can take a preliminary blood test for now.”

Brian and I left the appointment in silence. He spoke first, “What do we think we should do?”

“What do you mean?” I asked, confused.

“I mean, if Baby A has Down Syndrome, should we keep him/her?”

I stopped in the middle of the sidewalk and stared at him, “Of course we keep Baby A, even if they have Down Syndrome!”

I’d spent so much time around Down Syndrome (DS) adults, they’d quickly become my favorites at camp. I loved the way they spoke with a lisp, their telltale almond eyes, their clumsy gentleness and how they seemed to know no fear. Imagining our twins together — one neurotypical and the other with DS — already made me smile. Our family would be richer because of — not in spite of — Down.

We decided to do the bloodtest anyhow because I wanted to mentally prepare. Besides, we’d still have one neurotypical kid anyhow — so we wouldn’t miss out on the parenting experience we’d always imagined.

A little over a week later, I got a call from the hospital with the results — at least one of thebabies was a boy, and they were both low risk of the screened-for trisomies, including Down Syndrome. At least now we knew what to expect.

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From early on in the pregnancy, Brian and I intentionally sat down every night and tried to imagine the twins, and then pray for their health and that they’d make it fullterm. It felt important to do because we’d both had the instinct to disengage from getting too attached. Yet we knew we wanted to be the type of parents that wouldn’t run away in fear. So, each night, we’d imagine our two babies growing up together and then specifically bless every part of the pregnancy process we could think of — my body, their bodies — that they’d be born alive and healthy and fullterm.

Now that we had the news that Baby A didn’t have Down Syndrome, I felt a small pang of sadness. In that week I’d already begun imagining life with Baby A growing up with little almond eyes and thick fingers. But, just in case something was still off genetically, we added a new line to our prayers at night. “Baby A, we pray that you be chromosomally normal — no extras, no missing parts, and no mosaics.” That seemed specific enough to cover it.

If you know our story, you know we lost Baby B a few weeks later. And then Baby A — Eloise — started falling more and more behind in size at each biweekly scan.

Weirdly, though, if any medical professional knew the possibility that Eloise was tiny because of a genetic abnormality, either they never mentioned it or I blocked it out. Although I knew there were usually two possible reasons a baby was small in utero.

1. The mom’s body isn’t working properly.
2. There’s something wrong with the baby.

Over and over and over again I was scanned by the best ultrasound tech in Estonia. Other than the fact that Eloise had a 2-vessel umbilical cord instead of 3, they found nothing wrong with me or her other than her size — no clear abnormalities in either of us. So we started the slow induction process at a little after 37 weeks and little Eloise was born at 38+2 via emergency c-section.

Weirdly though, Eloise’s birth wasn’t nearly as traumatic as the aftermath. Being separated from Brian due to COVID restrictions. Having to pump around the clock because she couldn’t latch. Getting in and out of a hospital bed by myself with a huge, gaping wound in my abdomen. Not understanding why Eloise was stuck in the NICU for a week. Navigating the ever-changing NICU rules of spending time with her depending on which staff was on duty. Post partum hormones. Oh, and the fussiness and hours of screaming that started just a few days into Eloise’s life journey and didn’t stop until she was around 9 months old. Add in the surprise diagnosis we got for her when she was 5 weeks old and overwhelm didn’t even begin to describe how we felt.

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Before Eloise was born, I’d read somewhere that babies born under 2.27kg/4.5lbs had a higher risk of developing autism. I’d also read in so many places how important breastfeeding was to the baby’s emotional attachment. So my two biggest fears before she was born was that she’d turn out to be unable to breastfeed and develop autism.

Fascinatingly, both turned out to be true — autism is one element to Eloise’s syndrome and normal breastfeeding just never happened, despite my best efforts.

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I sometimes wonder why I was excited and accepting when I thought she might have Down Syndrome in utero, but devastated when we learned her actual diagnosis later.

• Was it because back then we still had her twin brother so I thought we’d still have a typical kid, too?
• Was it because I was familiar with Down syndrome kids but had no idea what to expect with her rare disorder?
• Was it because we spent so many months imagining her as “normal” so we had to let go of those dreams?
• Was it because I just hadn’t considered a different syndrome was a possibility?
• Was it becuase she would be nonverbal?
• Was it because, even though I’d worked with hundreds of mentally disabled adults, that I’d had no idea how much work went into raising them — the therapy filled weeks from early on, the sensory meltdowns, the medical complications, the delayed gross motor skills, the extra equipment and research and coordinating, the stares and questions?

Maybe it was a bit of everything. But I think, especially when we first got her diagnosis, I felt like her genetic deletion had stolen the opportunity to know her and to be known by her.

Eloise, at the age of 2.5, still doesn’t seem to understand speech, doesn’t really make eye contact, and has a lot of autism characteristics. Yet I can confirm this has not stopped her from developing loads of personality and preferences — this kid is most definitely knowable. And, although I’m not sure she has much preference for who watches her, she, at the very least, does recognize and enjoy my singing.

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But back to this baby.

Somewhere in between first and second trimesters, Brian began putting his hand on my belly at night and praying the type of prayers we’d done with our pregnancy with Eloise. Prayers my body would support him, that he’d be fullterm, that he’d be neurotypical, that he’d be born alive and healthy, that he’d be smart and kind and funny and more. Usually, as Brian prayed, I’d stare off into the distance, disconnected.

Several weeks after we’d gotten the blood test results, Brian asked me when I was going to join him in nightly prayers for our baby.

I told him I wasn’t sure — something felt off and I needed to figure out what.

Finally, one night I understood. The prayers we had done for Eloise were around what we wanted her to be like. And then, of course, when it turned out those things were actually impossible, I was devasted. I didn’t want to make the same mistake with this kid.

So how could I pray?

I had an idea.

Instead of pouring out my hopes and dreams for him, making that about what I want in a kid, I could flip that around and make it be about him getting what he needed, regardless of how he turned out.

So I began praying that we’d have the maturity, the capacity, and the mental and emotional skills we needed to be good parents for him. That he’d have good friends. That we’d meet great families that would be extensions of our own. That he’d have supportive teachers. That we’d find the wisdom and resources to navigate tough situations when they inevitably appeared.

I could wholeheartedly pray that we’d be the parents he needed, and that the environment around him would help him thrive — whatever that ended up meaning. Disabilities, quirks, surprises, or not.

Still, finding a way to pray didn’t get rid of my fears.

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Because I’ve connected with and followed so many couples with fertility issues and families with disabled kids mostly on instagram, I know far more horror stories than your average human. Stories of second trimester loss, accidental birth trauma that left kids profoundly disabled, single gene anomalies, cord wrapping, stillbirth, rare disabilities, endless genetic testing, freak accidents, and, well, our own of losing at least 1 or more baby or embryo over 11 different natural and IVF attempts. I’ve realized that it makes perfect sense that all too often I have felt like I was just a breath away from disaster striking.

I cannot count the time over the last 5-6 months that I’ve suddenly noticed that it’s been an hour or more and I’m not sure he’s moved. Often, my anxiety would spiral, convinced we’d lost him. But then he’d move again — usually only a few minutes later because he’s been so incredibly active this entire time — and I would then return to a place of delicate peace.

So how do you get over anxiety? How do you make it through?

Eloise has been in the midst of some sort of crisis or problem the entirety of this pregnancy. It’s a distraction that at least keeps my mind off the doom and gloom because I have elsewhere to focus. But that just masks anxiety for a time, it doesn’t really deal with the root.

So how do you go from fear-filled to confident, from avoidant to embracing, from worried to hopeful?

I’m not sure it’s that simple — at least for most of us humans. And I think I’ve come to a place where I’m okay with that. Becuase there was something I learned when we lost Eloise’s twin, that made me realize that “having no anxiety” may not be the right goal.

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Brian and I had already done a lot of crying for Eloise’s twin, the little boy we’d lost well into second trimester. Brian found a haunting cover of a song, Northwest Passage that seemed to describe his own emotional turmoil in such poignant beauty — a group of explorers that knew they’d likely die in their pursuit of a big dream, but it felt worth the risk of death to keep trying anyway. (Side note, even today I still instantly cry every time I hear this song, it moves something deep and unexplainable in my soul.)

This loss felt big — almost too big to handle. Yet, still, it felt important to give him a name.

So around a week after we had heard the news, Brian and I sat on our bed, closed our eyes, and prayed that the right name would come.

Suddenly, Leon — Leo for short — popped up in my mind. It surprised me, as I couldn’t remember consciously ever noticing the name. And Brian and I had definitely never discussed it as an option.

I opened my eyes and looked over at Brian. “Did you get a name?”

He blinked and looked at me with a sly smile. “Maybe.”

“Yeah, me too. What name came to you?”

“No, you first. What name did you hear?” he countered.

“Ummm… maybe I made this up but the name that popped up in my head was Leon, or Leo for short.”

Brian’s shoulders began shaking with laughter.

“What’s so funny?”

“That’s basically the same name I thought of. Because the name that came to me was Leonid.”

I guess it was clear — Leonid, or Leon/Leo for short — it was.

I looked up the meaning — it meant Lion-hearted. Or brave.

I paused and asked, as I have learned to do over the years, “God, what do you want us to notice about this name?”

Suddenly, a flood of tears came as I saw Brian and I, absolutely terrified we’d lose these babies, but choosing anyway to imagine a future with them every night. And an understanding flooded in.

Bravery wasn’t the absence of fear — it was moving forward in love despite fear.

Leon’s name was a declaration over us. We were lion-hearted. We were brave. Not because we had no fear or anxiety, we still had loads of that. But because, in spite of that anxiety, we were bravely seeking to connect with our unborn children, still knowing at any moment their lives could end and it could hurt us deeply.

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So that’s where we are today. Most of the time I am not worried we will lose this baby boy I’m carrying who is due in just a few short weeks now. But there are still times — probably weekly — where I still fall into the darkness of anxiety. Yet, still, I work to find ways to again connect. To again attach. To again love. Because that’s what bravery is — seeking that love would triumph over fear, even if you have to work at it over and over and over and over and over again for the rest of your life.

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Now for the final part. Caring for two infants — because Eloise is still, in many ways, an infant — will not be easy. So we are coming up with a plan of how to make it through the first few months. And maybe you can help with your own creative ideas.

That final post? Part 6: Self-care survival plans

All our love,

Mallory, Brian, Eloise, and baby-brother-to-be

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