Defying the odds

There’s a common narrative I hear nearly every single day from kind hearted strangers or people we know.

“Don’t limit her — she’s going to surprise you!”

“She’ll defy the odds, just you wait.”

“Don’t listen to what the doctors say, she’ll blow your mind with what she can do.”

“Don’t pay attention to the research, let Eloise guide you because she is going to do far more than you give her credit for.”

“I have this cousin/grandkid/neighbor/acquaintance who doctors said would be [insert catastrophic diagnosis] but now they are [insert miracle success story] so don’t worry!”

The narrative, at the core, is the same. “Don’t think negative, think positive!” I think the intent is to encourage us, to bring us out of a place of darkness and sorrow and re-direct us to some more light and happy place.

It doesn’t upset me, but it really is so fascinating.

Because, without realizing it, as a society we equate disability with sadness and darkness, but “normal development” with achievement and positivity.

But is it really? Are all neurotypical kids happy and satisfied? Are all parents of neurotypical kids content and full of joy? I think you know that answer.

You see, I don’t see the fact that Eloise will never speak as negative. I don’t see the fact that Eloise may not walk until 7 or 8 — or never at all — as negative. I don’t see the fact that Eloise will at best have the mental capacity of a 1 year old as negative.

In fact, if anything, learning early on that it was quite possible that Eloise would be wheelchair bound with no ability to communicate in any discernable way was so incredibly helpful for me.

Why was it helpful?

Because then Brian and I could get serious about facing the possibility of what we thought would be a grim future for Eloise. So we did a lot of grieving and processing and therapy to get to a place where we could love her and choose her — no matter what skills or outcomes lay in her future.

And, because we accepted the worst case scenarios as a possibility, what it means for us today is that anything that happens that is not the worst case scenario feels like an absolute gift. Because we didn’t expect it. Because we didn’t pin our hopes on it.

I recently came across an explanation of the word “disappointment” that was so incredible.

“Disappointment is unmet expectations, and the more significant the expectations, the more significant the disappointment”

Brené Brown in Atlas of the Heart

You see, if we no longer expect Eloise to walk or talk or sit or stand or play or feed herself, then we can love her where she is at today. We can be present with her. We can appreciate who she is rather than waiting for who we want her to be.

Because the problem is that Western culture sees hope as something like “Think positively and expect this good thing I want to happen.” (Because I believe getting what I want will make me happy.)

Getting a degree, a good job, a spouse, a pregnancy, a kid, a beach body, an award, a dream home, these are all things we think if we can just get that we want, then we will be happy. But, if we’re honest with ourselves, it’s rarely true.

You see, having Eloise has completely re-defined how I see hope. It’s not a matter of thinking positive and shooting for the best case scenario with her. Rather, it’s about being okay no matter what crud or joy life brings us.

Yes, we were absolutely devastated to get Eloise’s diagnosis. We were devastated that she would never read, never write, never talk, never do a million other things. Because that was the experience we were looking for. That was how we had defined parenthood and, really, happiness.

It’s still true, we won’t get most of the experiences we had truly looked forward. But we will get something different. Not better, but different.

Which is why our parenthood doesn’t have to be sad because Eloise won’t ever be typical. In fact, at this very moment, our parenting experience is far exceeding either Brian or I’s hopes or dreams. Not because Eloise is doing typical things, but because she is just such a delight.

And when hard times come again, we will grieve again. But, for now, we are content to be with her in this glorious moment. Seizure-free for 44 days. And as happy as she has ever been.

We don’t do therapies to make Eloise normal. We do therapies because Eloise has shown us that she prefers autonomy to having us do everything for her. But, in that process, we’ve decided we will push her, but not too hard. Because peace and joy is our ultimate goal, not making Eloise “normal.” Because who defines “normal” anyway?

In closing, I’ll leave you with Brian’s text from this morning. Because it so aptly describes where we are in this season of life — however long it lasts.

“In the car I was just struck with a profound sense of how lucky I am, how privileged. I really live a charmed life. Yes, I’ve done SOME hard work here and there over the years, but the levers that have brought me to such a wonderful life have largely been outside my control.”

Sure, if Eloise manages to walk earlier than we expected, or talk, or read an write — we will gladly take it. But we don’t need it to feel content. Because she is enough.

And, really, being in a place of contentment and joy when you have an almost 2 year old is defying the odds in and of itself. And we couldn’t feel more grateful.

All our love,

Mallory, Brian, & Eloise

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A photo of all three of us from a few days ago — the only day we could vaguely get Eloise to smile was to squeeze her little Sophie the giraffe. Otherwise, this kid looked bored as heck in every single picture.