Not your normal birth announcement

This is not your normal birth announcement.

It’s because our first baby, after 13 years of hoping, will never ever be “normal.” Because she’s missing 19 million base lines of DNA.

You read that right. For our little Eloise, 19 million lines of code just aren’t there. It’s astounding she even made it this far.

Kids with her same ridiculously rare chromosomal microdeletion (2q24.3) have moderate to severe motor skill delays, and generally stay at the mental capacity of anywhere from 3 months all the way to 2 years old if they’re really lucky. She’ll spend a lot of time in the hospital, both planned and unplanned visits, getting treatment for the array of medical issues that are almost definitely in the future of kids like her. And multiple-times-a-week therapy will just be her reality.

In short, her life will look very very different than what we’d imagined when we’d pictured having a kid.

Eloise means “fighter” or “healthy.” We chose the name on purpose, because there were already a few signs before she was even born that we might be in for some difficult times ahead. She’s an IVF baby. Specifically, transfer number 8, embryo number 26, or 27, or something around there. I’ve honestly lost count by now. I’ll spare you the deep details, but the quick rundown is at 6 weeks they gave her a 50-50 shot of making it. At 13 weeks they thought she had Down Syndrome. At 16 weeks we lost her “healthier looking” twin brother. At 20 weeks we discovered her growth was slowing down. At 34 weeks they had planned on delivering her because she was really really tiny and they were afraid she would die. And then at 38+3 weeks after a long induction, she almost died as soon as my contractions started. 7 minutes after Brian watched her heart rate plummet on a screen, our little Eloise the fighter was born via emergency c-section.

That’s when the doctors immediately suspected something was wrong.

Despite the fact that she held her body temperature well, breathed on her own, and was alert and eating well, she had a few anomalies.

• Her tiny size (97%+ other babies her age were larger).
• Her unusual facial features.- Her pointer fingers that weren’t quite right.
• The fact that her 4 smallest toes were fused together on each foot.

The doctors suspected there was a problem with her chromosomes. We suspected she was just a perfectly healthy baby with a few birth defects that were treatable. We went home and started our somewhat turbulent life together as a family of 3.

Then came March 10th.

D-day. Diagnosis day. The day Brian and I learned what we were in for when her genetic testing results came back.

That was the day that began the long road of both grief and acceptance that Brian and I have begun to walk.

If we’re lucky and she’s on the milder end of her deletion, she will walk some day (with lots and lots of therapy), but never “normally.” She will almost undoubtedly never speak. She will definitely never read. She will very likely have seizures. She will never make up stories in her head. She will likely never play with other children. She will probably never care about what clothes she wears nor demand specific presents. She will almost certainly never date or marry. And it’s a coin toss whether or not she’ll be able to continue eating on her own or whether we’ll need to get her a feeding tube.

There’s so much she’ll never be able to do.

I’d love to say “She’s gonna defy all the doctors and astound everyone!” And, sure, that may happen in tiny ways. Maybe she’ll walk unassisted by 3.5 years instead of the suspected 4 or 7. Maybe she’ll have a sound that we learn means “food.” Maybe she’ll occasionally show interest in other little kids. But she will never ever be like other children.

And, when you look at that long list, it looks so depressing. So overwhelming. So grief-stricken.

But.

And it’s a big but.

I have a feeling her life is going to be much much more than a sum of what she can’t do. And, over time, it will become much more of how she helps us view the world differently. In an entirely different and better light.

Because, in many ways, little Eloise will fulfill almost every parent’s dreams.

What dreams, you ask?

• The dream of having a child who is joy-filled every day, no matter how much physical pain she’s going through.
• The dream of having a child who doesn’t measure her worth on how much she’s accomplished.
• The dream of having a child who doesn’t see surface beauty as something to invest in.
• The dream of having a child who won’t get depressed by any current political climate.
• The dream of having a child who won’t compare herself to her peers.
• The dream of having a child who will delight in the tiniest things her entire life.
• The dream of having a child who won’t fall into depression if she doesn’t have the right job, the right partner, the right amount of kids, the right home, the right accolades.
• The dream of having a child who loves deeply and is loved deeply, and that’s the most important thing to her.

One thing that seems clear already is that the world, and Brian and I, must have needed her. The part she’ll play in enriching all our lives has yet to be fully written, but it almost seems there’s no other option.

• She was the only one of 26 embryos that made it.
• She’s only one of around 100 others in the entire world with this chromosomal deletion.
• And I cannot even count the amount of times she should have died along the way.

But here she is. Fighting like her name foretold.

Once upon a time I’d dreamed of how we’d announce the birth of our long-awaited baby. And I’ll be honest, this wasn’t how I’d imagined doing it. And on Good Friday, the day the world remembers the tragic, unfair death of Jesus, it seems fitting to finally announce our baby girl because, in some ways, her birth felt like the death of many of our dreams. On Good Friday, Jesus’ disciples were grieving the loss of their greatest teacher and friend — they could see nothing good about his death. To them, all hope died that day, the day he breathed his last breath on the cross.

But that’s just how it feels at times today.

As you probably already know, in the story, two days after Good Friday comes Resurrection Sunday. Easter. To Jesus’ disciples at the time, it was a total surprise. They weren’t expecting that only a few days after the worst day in their life, the best day would come. They weren’t expecting that Jesus would come back to life. Because after Jesus rose from the dead, the joy and hope of Resurrection Sunday far outshadowed the grief and despair of Good Friday.

And I think Eloise’s story will be like that. I think in many years she will be far more our Resurrection Sunday, and not so much our mournful Friday.

But as I write today, I still mourn. With the hope that soon, maybe very soon, I’ll rejoice.

The good news is that she’s a tiny, adorable little human who is already a joy to spend time with. So we’re already seeing glimpses of that resurrection.