Re-writing our story

Originally posted on facebook in 2021, a few weeks after we got Eloise’s diagnosis.

Brian and I’s genetic test results came back.

Neither of us are carriers of any sort of transmuted or mosaic or damaged or missing genes. We are, somehow, completely normal — genetically speaking, at least.

We were both shocked.

We were so sure that was why we lost 2 other babies in the 2nd trimester. We were so sure that was why we went through 26 embryos and 7 other IVF transfers and multiple clomid trials over 5 years and nothing worked. We were so sure that was why we were never able to get pregnant on our own. (Side note: Our “clean genetic bill” does come with a small caveat. There’s still a less than 1% possibility that we have something called germline mosaicism where, despite the fact that our blood tests come back normal, one of us still carries the problem occasionally in sperm or egg.)

As I drove home from my chat with the geneticist yesterday, processing everything as our saintly neighbor Julia watched Eloise back at the house, I was listening to a podcast on stories. How writing out your story is therapeutic. And how writing it from a different perspective is even moreso.

Eloise missing 19 million lines of DNA. A vast majority of babies like that don’t make it past the first trimester. Missing that much DNA should mean you won’t make it. That seems like a miracle.

There were so many instances (more than I can count) where she should have died. Somehow, I was miraculously hooked up to a monitor in the exact instance my contractions started and we were able to see her heart stop at that moment and get her to c-section in 7 minutes and save her life. That seems like a miracle.

There are 7.674 billion people in the world and only around 100 have this chromosomal deletion. What are the odds? More tiny than I can comprehend. That seems like a miracle.

So, taking the advice of that podcast, if I re-write Eloise’s story from the perspective of God (yes, yes I know, no one can know if there is a God, but in my worldview I choose to believe there is), it goes a bit like this:

The story of Eloise (from not Mallory’s perspective)

Once upon a time there was a little girl named Eloise who the world desperately needed because she was so incredibly special.

Sure, she couldn’t talk, but she sure could communicate.

Sure, she may not have been able to make up stories in her head, but her story was one that inspired many.

Sure she might not have been the envy of kids at school, but she was able to never care about what others thought of her.

Sure, she might not have ever been objectively “beautiful,” but she was able to delight in life in a way that most human beings can only dream of.

Sure, it might have taken her a lot longer to walk than others and, even still, she’d never walk normally. But the incredible amount of effort and work it took her to get there is a trait most of us wish we had.

Though Eloise stayed tiny her entire life, she fought hard for every milestone she hit. She was a fighter, after all.

Although she was different, and unexpected, she brought joy to everyone who had the privilege of being around her as she grew up. Her smiles. Her giggles. Her constant desire to snuggle. The way she made those around her stop and listen with not just their ears, but with their whole being to figure out what it was she was trying to say. You couldn’t not stop and breathe in the good life when you were around her.

The world didn’t know it, but it needed Eloise. Estonia didn’t know it, but it needed Eloise. The international and Estonian community didn’t know it, but they needed Eloise.

And so, because Eloise was much needed (although no one knew they wanted her just yet), she defied all the odds and came. And, somehow, God decided to give her to a set of unsuspecting parents named Brian and Mallory.

Brian had been planning his fatherhood role since he was 9, but he soon learned he’d have to throw out his plans and make new ones for baby Eloise. Mallory had been concerned she’d be a selfish mom, but she soon learned that selfishness would no longer be an option with their new little one. And the two parents, who had thought for sure they could raise Eloise on their own, soon realized they really did need a village to help them raise this precious, special little girl in a land far away from their native home.

God knew it would be hard for the couple at first, but that’s why he gave them such an incredible group of humans both in Estonia and abroad who would love both them and little Eloise and help them raise her.

And, over the years, even amidst the many hospital stays and surgeries and many-times-a-week therapies, and always being different from everyone around her, Eloise blossomed. She became beloved by all her “Aunties” and “Uncles” that, though they weren’t related to her by blood, came to love her anyway. And Eloise absorbed so many wonderful things from each human that dared to love her and join her in her life — things that her parents couldn’t give her but others could. Their silliness. Their expressions. Their childhood books. Their adventures.

And, something surprising emerged over the years. Community. Love. Vulnerability. Support. Giving and receiving without expecting anything in return. Tenderness towards the weakest among us in society. Those that partook in the life of Eloise and her parents felt energized. And, surprisingly, in many ways, Eloise became the catalyst to develop most beautiful way of living many had ever encountered.

And, for those who took the time to know her, she became incredibly special. Because, ultimately, she didn’t need words to share her heart with others. She had much, much more.”

I cry as I write this.

Knowing she almost didn’t make it and knowing that Brian and I weren’t carriers, just suddenly shifted something in me. She really did fight her way into existence. She has to be something we needed. The world needed Eloise. Otherwise, how in the world did she make it?

I listened to a podcast a few days back (one from The Mama Bear Podcast). The mom found out on the day of her son’s birth that he had Down Syndrome. She was devastated. But her family and friends came in and scooped her up emotionally. They celebrated her little boy, and they insisted she put together the most amazing birth announcements ever — because even though he wasn’t the baby she dreamed of, he was still worth celebrating.

That touched something in me. Part of me had thought “What’s the point in dressing her in cute outfits or taking week-by-week photos? She’ll never see them nor care most likely.”

But those things aren’t for our kids anyway, they are for us. They are about us celebrating our kids. And Eloise, though she wasn’t what we expected, and it will still be a very long hard road with a lot of tears and a lot of close calls and scary times, is worth it.

She’s worth the same celebration and attention and care as every other little one. And, as the mom in the podcast noted, though she may not be what we expected, we still have this adorable tiny little baby who needs us and gives the most amazing snuggles.

And we love her.

I don’t know if it’s a temporary shift or a long-term shift, but my brain at the moment feels more like, “Dang, how incredible we were chosen to be her parents. This is gonna be hard, but I think we’ll make it.”

I’m hoping that feeling lasts.