One year after Eloise’s Good Friday birth announcement

Almost exactly one year ago, on Good Friday, I finally announced Eloise’s birth to the world. It was a teary letter.

It seems fitting to re-visit that post a year later because, though we’re in a quite different place now than we were then, it is still so prophetic in many ways.

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 deletion (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.

….

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.

….

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.

….

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.

“Not your normal birth announcement” Good Friday 2021, April 2

One year later

One year later and, yes, things are still hard. But so much easier than they were 12 months ago when it was just me taking care of Eloise primarily by myself, I was trying to pump 9 times a day and nurse Eloise at the same time. Eloise was in extreme pain from food intolerances, I was on an extreme diet, we were on absolute life overload from all the chores that were piling up, and I had absolutely no time off at all.

Today, though, Brian and I are working on this together, we’re figuring out rhythms of how to take care of ourselves and her, Eloise’s food intolerances are gone, I only pump 5 times a day with no nursing (although even the pumping is getting harder), we’re getting our life in order by getting rid of a lot of our stuff, and Eloise has therapies at our home 5 times a week as long as she isn’t in so much teething pain that we have to skip a day.

And, despite my worst fears that we’d end up with a child we could never get to know, our precious little girl most definitely has a personality. She is know-able, and she’s captured our hearts, as well as many others’.

Looking back on that birth announcement, the developmental age of 2 seems a bit too optimistic, but, hey. Maybe I read it somewhere. Maybe it’s actually true. But I won’t hold my breath.

Why aren’t we holding out for a miracle?

We aren’t holding out for a miracle that Eloise will surpass all of these “best case scenarios.” Why? Because we’ve come to believe it’s far more important that we figure out how to be “okay” no matter what Eloise’s outcome. I mean, shoot, because of her SCN1A related seizures this kid has anywhere from a 10-30% chance of dying before she reaches 14. We can live in denial that the worst will happen, we can live every day in fear that this day will be her last, or we can savor every day we do have with her, knowing that if something does happen — that we’ve done our best to live fully present and full of love.

We’ve chosen the last option. We won’t pretend the bad stuff can’t happen, and we won’t live in a place where we’re always convinced it WILL happen but, instead, we’ll live in a place where we enjoy her for who she is today, knowing we could always lose her.

Eloise seems to be on a development streak

For our next update, I’ll save some of our discussion of me learning to let go of some control in the household chores, how I’m learning to be more present, the goals and dreams we’re coming up with for our own life, and figuring out who goes back to work.

For now, really the most important and exciting thing is that Eloise is really really really developing.

Eloise is developing far more protective instincts

A few months back, not only would Eloise not notice objects, let alone grab them, but I was concerned because if I gently put a cloth or blanket on her face, she did absolutely nothing. She didn’t cry, she didn’t try to take it off — nothing. But today?

Eloise is interacting with objects far more

I had her in a carrier yesterday, putting away dishes and was shocked that she reached out to grab onto the bottle rack drier. This kid is slowly awakening to the world around her.

Eloise is sitting way better

Eloise’s sitting continues to get better. Oftentimes, Brian and I will have her on our lap and we won’t even be supporting her for a minute or two. The problem is just still that she likes to throw herself back randomly. So we’re working on that.

Eloise has even had a developmental spurt with standing this week

We’ve been working on standing for awhile, but one of her physiotherapists suggest we try using some sort of bar for her to use to stand. At first we used a mop handle with one of us sitting on it, but now we realized we could use one of our dining room chairs. But the difference is incredible from Tuesday when it was first introduced to just today when she wanted to stand over and over again during her diaper change this morning.

Lots of physiotherapy is really really helping

This week, she had physiotherapy four days in a row. We said, “Well, it’ll either go great or it will be a crying disaster.”

The good news is that it went great! Somehow, miraculously, she cried less than ever during physiotherapy which surprised us and seeing how her standing progressed throughout the week was so encouraging.

One of our three physiotherapists has a bunch of experience working with highly disabled kids. She said this week, “It’s generally accepted that if a child can sit on their own by the age of two, then almost always they are eventually able to walk. And Eloise will definitely sit by two.”

My mama heart feels so encouraged. It’s very likely, friends, that she WILL walk someday. We’ve never hung on to the promise that she WILL walk, because many kids like her, especially those missing SCN1A, never do. So that’s why it’s even more incredible that she’s got a pretty good shot.

A tiny teething respite

Despite the fact that, like clockwork, we had a bunch of seizures this weekend (lately they seem to almost always happen on a weekend), this week has been a little better. We’ve started noticing that a good dose of paracetamol (tylenol equivalent) does sometimes reduce her pain enough to fall asleep if she’s really struggling.

• Last week she ate only a few spoons of solids a day. This week she’s been eating far more than a few spoonfuls — although still not even close to her pre-teething normal.
• Last week it would take her 2-3 hours to fall back asleep when she woke up in the middle of the night –this week most nights she falls asleep again within an hour (except last night 😅).
• Last week she wouldn’t let us put her down for even a few minutes, this week she’s content to hang out on the floor or in her bouncer for 5-10 minutes at a time.

Growing 4 molars is tough. And it’s even tougher when they come in very very very very very very very slowly. In fact, one of her teeth she’s growing hasn’t broken through yet at all, so we’re probably looking at more seizures on the day it does come in. C’est la vie.

Heading to Tartu Hospital on Monday

Because Eloise continues to have seizures despite the fact that she’s now on two anti-seizure medications, the three of us will be heading back to Tartu for an inpatient visit a little earlier than originally planned. On Monday we’ll be spending time with a team of specialists and tests to see what else can be done.

I don’t feel worried, and I also don’t really think there’s a lot more they can do to stop her seizures — but I’m glad they want to try.

Feeling warm and fuzzy and a bit more hopeful this week. Sending all our hugs,

Mallory, Brian, and Eloise

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