Re-defining hope

Recently, I’ve found myself mindlessly singing a song to Eloise as I put her down for a nap.

In this time of fear
When prayer so often proves in vain
Hope seems like the summer bird
Too swiftly flown away
Yet now I’m standing here
My heart’s so full, I can’t explain
Seeking faith and speaking words
I never thought I’d say

There can be miracles
When you believe
Though hope is frail, it’s hard to kill
Who knows what miracles you can achieve
When you believe, somehow you will
You will when you believe

“When You Believe” Prince of Egypt

It’s really a lovely song.

But I’ll have to disagree with the lyrics, “Who knows what miracles you can achieve when you believe. Somehow you will. You will when you believe.”

Sometimes, no matter how hard you believe and hope and pray for something, a miracle never happens.

We believed our baby would be born chromosomally normal.

In fact, we believed and hoped so much that it was a specific blessing we spoke over her every single day. Just in case.

“Baby girl, we bless you to be chromosomally normal. No extras, no missing pieces, no aberrations.”

I mean, can you get more specific?

Here she is, though, without 19 million pairs of DNA that should be there. Clearly, that blessing didn’t work as intended.

Hope can be a scary thing.

I think hope can be terrifying because it makes us feel vulnerable. If things don’t happen as we’d hoped, we feel like fools.

Strangely, though, as a species we’re drawn to hope.

I should know, because Americans lead the world in hopefulness. We’re convinced there must be a bright side. And, yes, that does make us borderline delusional at times. And, yes, when things don’t turn out as planned, we do often look like fools.

Pre-Eloise I would have fallen firmly into the “very hopeful human” category.

But since Eloise’s diagnosis, it’s been harder to hope. A lot harder. At least in the way I’d been defining hope as, “everything good you wish for will happen.”

Prior to Eloise’s diagnosis, hope = optimism. But afterwards, I couldn’t have that same optimism any longer.

You see, since it feels like I can see her future through the lives of the other deletion kids, it’s like there’s no point in hoping for something that almost certainly won’t happen for her.

Still, hope endures. It just looks a bit different.

Lately, instead of one loud, American voice of optimism, I’ve found I now have a chorus of 3.

1. Optimistic Mallory (pre-diagnosis, she was my main voice, the one I would have called “hope”)
2. Realistic Mallory (post-diagnosis, she has been the loudest)
3. New Hope Mallory (this one is a new, emerging voice — I think she’s going to re-define hope for me)

Hoping she’ll reach a mental age greater than 1 year

Optimistic Mallory

Eloise may read — at least a little — someday. She may communicate complex ideas. She may even be able to write a few words.

And I have good reason to think so.

Recently, I met an adorable little babe with Down Syndrome. She was born prematurely, just a few days after Eloise actually. Not only that, but I also finished an incredible book called, “Raising a Rare Girl,” where the author describes her daughter through all the early stages of her life.

As I look at Eloise’s motor development — raising her head, rolling over, making lots of noises — she’s more advanced than both of those kids at this age. And they both have syndromes with far higher expectations for mental ability than Eloise’s 2q24.3 has. They both should reach the mental age of 5 or more.

Realistic Mallory

Motor development and intellectual development are 2 different things.

And, after all, just because she has a strong start in her motor skills in comparison to two kids doesn’t mean she’ll continue on the same trajectory nor at the same speed as they will. As you know, she might hit many of her early milestones, but then at some point the skills will just get too hard for her — harder than it will be for them — and she’ll stop growing intellectually.

So, although Eloise might be starting out “more advanced” right now, over time these two kids will catch up and then eventually surpass her — because their maximum mental capabilities will be higher with their syndromes.

New Hope Mallory

You know what?

If she only reaches the mental age of three months old, you will celebrate and love her. If she only reaches the mental age of one, you will celebrate and love her. If she only reaches the mental age of five or fifteen or fifty-seven, you will celebrate and love her.

Because her worth doesn’t lie in her becoming a success story. Her worth lies in the fact that she exists. That she’s a creation — a beautiful one at that — of the Creator. That’s what makes her worthy of love.

After all, she’s an absolute miracle. Babies with 5 million or more lines of DNA missing normally don’t make it past the first trimester — and Eloise is missing 19 million.

This little girl is incredible, no matter how old she becomes mentally.

Hoping she’ll be sitting and crawling in the next few months

Optimistic Mallory

I think this kid will be sitting unsupported by 9 months, crawling by 12 months, and walking by 18-24 months. Maybe even earlier.

Here’s why.

In the 2q24.3 pamphlet it says,

“Early developers may learn to roll from around nine months but others are unable to roll over until their third year or even later.“

2q24.3 microdeletion from UNIQUE’s rarechromo.org

Eloise was already rolling before 5 months. Sure, she doesn’t do it all the time, but she can do it. She just did it again today.

“Sitting – at first in a slumped position – typically emerges from around 18 months, although it can be much later.”

2q24.3 microdeletion from UNIQUE’s rarechromo.org

Eloise has been sitting supported since 4 months. Yes, she’s totallly slumped, but it still counts.

And if she’s hitting these milestones so far ahead of the 2q24.3 deletion kids that were studied, why not assume she will continue on that same early trajectory?

Realistic Mallory

Ummm. To call her occasionally avoiding tummy time by pushing off and ending up on her side can hardly be called rolling. And, sure, when you hold her hands to help her sit up she might put almost no weight on them, but there’s no way you can call that sitting. Eloise will topple right over.

I think this is your delusion talking — stretching what’s actually true into a narrative you want to be true. We all know that at some point these milestones will just get too hard for her little brain to handle. That’s sweet you want to hope for more, but we know better.

New Hope Mallory

Eloise will roll when it’s her time to roll. Or maybe she won’t.

Eloise will sit when it’s her time to sit. Or maybe she won’t.

Eloise will crawl and walk and run and jump when it’s her time. Or maybe she won’t.

Maybe she’ll end up in a hospital bed, unable to move or do much of anything but exist. And, though that wouldn’t be what anyone would want, she would still be worthy of love.

Because Eloise doesn’t need to “astound doctors” nor “be ahead of her peers” nor “keep up with neurotypical babies” to be loveable. If she never hits any more goals, or even moves backwards, she’s still an incredible gift.

Hoping she’ll grow out of her food allergies

Optimistic Mallory

The pamphlet only mentioned one kiddo with food intolerances. And I only know one who still has a bunch of food intolerances that lasted beyond childhood.

So there’s a pretty good chance she could grow out of these food sensitivities if there are only a few isolated cases.

Right?

Realistic Mallory

Many of the kiddos seem to have GI and reflux issues that last long beyond infancy.

If that’s true for Eloise, too, then she will likely have her GI issues in the form of these food intolerances past infancy. Maybe into adulthood.

So you need to be prepared.

Besides, probably the only reason you only know 1 kid who still has food allergies is because so many of the kids are on formula diets with their feeding tubes.

New Hope Mallory

We all agree that we’d prefer if Eloise wasn’t in pain from food intolerances.

But even if she eventually goes on an all-formula diet and stays on it for forever — food isn’t everything. Her life is still one worth living.

Besides, Eloise doesn’t have to be an overcomer of food intolerances to bring hope. The fact that she’s here, alive and breathing and fighting, is hope enough. How many other kids make it this far missing 19 million pairs of DNA? Not many.

Hoping she’ll lose her feeding difficulties

Optimistic Mallory

She already likes eating from a spoon. She actively uses her hands when we feed her. And she watches our eating with great interest.

Once she’s on solids and develops the use of her hands, maybe these feeding difficulties will be behind us. Because she’ll be feeding herself. Soon.

Realistic Mallory

She’s already in dangerous territory because she eats orally — infections that result from aspirating during feeding is the number one reason kids like her die early.

Mastering the use of her hands and fingers is already going to be very tough for Eloise. She’s got a loooooong way to go before she’s grasping objects on her own, let alone to the point that she can put something in her mouth other than her adorable little fingers.

So I’m afraid you’ll probably be feeding her yourself— spoon, cup, bottle, syringe, or something in between — for many years to come. Or at the very least closely supervising her.

New Hope Mallory

Regardless of whether you’re feeding her or she’s feeding herself, you’ve heard enough to know that Eloise’s feedings might still take over an hour as she grows up, or maybe even longer. Solids aren’t necessarily magic. You’ll be introducing new textures and tastes on top of possible stomach pain. This might be a rough road.

So even if she never grows out of feeding difficulties, even if they actually get worse instead of better, it will be okay. You will be okay. She will be okay.

Don’t dismiss too quickly the m virtues you may develop over time as you sit with Eloise in prolonged feeding after prolonged feeding after prolonged feeding.

Yes, feeding difficulties have broken you in the past. Yes, they’re still often breaking you. And, yes, they will continue to break you. While it is painful, it’s useful to notice that a new Mallory is emerging from these ashes.

Her long feedings stop you from hurrying. Stop you from getting things done. Stop you from mindlessly searching for entertainment. They force you to give her your full attention. They bond the two of you together. And they help you continue putting her needs, day after day, as a top priority so she learns that she is safe. So that she learns you are safe. Life is safe.

And the you that will emerge on the other side will be someone that both you and she can be proud of.

Hoping she’ll be able to speak

Optimistic Mallory

I used to think speaking would almost certainly be impossible for her because I didn’t know of a single case in her deletion. Now I know of a few.

• A woman who had maybe 10 words and lots more signs. Mom, Dad, hi, Yes, No, I can’t, it hurts, hi, uh oh, more
• A little boy (whose deletion is a bit less severe) has a handful of words and signs
• A little girl who can say “Mom” and “home”
• A boy (he only has a mosaic deletion) has quite a few words

And the parents of the woman who had 10 words said their daughter wasn’t babbling nearly as much as Eloise is at this age. So why not assume that Eloise will have at least a few words, if not be able to put together a few sentences?

Realistic Mallory

It’s almost hard to argue with your logic here, until you look at literally every other case of kids like her. And them not speaking.

I’d love to think she will speak, but the odds just aren’t in Eloise’s favor here. All the kids you pointed out are missing way less DNA than Eloise, too. So keep that in mind.

New Hope Mallory

You know, one thing you hear over and over again is “Oh, wow, I keep forgetting ______ is actually non-verbal because they just get their point across so well.”

Even if Eloise never has any words, you can already see she is a communicator. She lets you know loud and clear whether she likes something or not. That may be all she can ever do. And that is enough.

My hopes, though, are changing

I am not sure I’ll ever return to the same optimistic Mallory that always thought things would turn out all right. (Even though, often, things will.)

But I’m guessing that, over time, my definition of hope will continue to evolve as I evolve. And mature as Eloise matures. It will be less about expecting the best-case scenario to happen, and more about being okay no matter what the outcome.

And that sounds healthier.