A Wonder of our Own

Words, they have power. Such power. Even from strangers.

I know my limits. I know to stay away from others opinions. But sometimes.it happens accidentally. I see something and instantly wish I hadnt.

In this case it was a book review. Someone said they enjoyed my Memoir but felt like I had lied at the end by painting such a pretty picture of my severely disabled (their words, certainly not mine) daughter Ellis.

One of my first instincts was, of course, to defend myself. My book was written two years ago. At the time everything was accurate. I had no way of knowing Ellis recovery would be slower than anticipated. Why would I honestly bare my heart and soul in every page of the book, only to lie at the very end? It made no sense.

I try not to be sensitive, but shes my daughter. This wasnt the first negative thing Id heard about her and I knew it wouldnt be the last. Why do people feel the need to tear down instead of build up? It made my Mama heart angry. I was protective over our story, and even more protective of my daughter.

It felt like someone was trying to attack my girl: make her seem less than, negate her story, pick apart her abilities, pick aparther.

While I never said it out loud, I decided not to share her as much with the world anymore. Keep her progress to just us. Hold the highs and lows close to the vest, only to be celebrated within our family. I was done sharing-if it meant receiving judgment in return.

Do you want the raw truth? My entire pregnancy with Ellis was without incident. I birthed a healthy child who two weeks later somehow contracted a deadly disease that almost robbed her of life. We are still dealing with the aftermath of bacterial meningitis and most likely will, in some capacity, for the rest of our lives. If you think Im completely at peace with that, you thought wrong. Some days wrapping my brain around it all still brings tears to my eyes. Quite simply, its the furthest thing from fair, for her-and for us.

For nearly 6 months I didnt write anything about Ellis continual journey. I didnt want her to be open for others comments, thoughts and opinions. Keeping it all to myself felt safe, and safe was just fine with me.

Yet as much as I wanted to keep her in a bubble, I began to feel my heart shifting ever so slightly.

It started over dinner with a dear friend. We talked about Ellis and all the difficulties we faced in her recovery. I even shared with her about the review Id read and how I felt if Ellis never fully recovered, people would no longer see her story as miraculous.

What people take away from your story isnt up to you. It IS up to you to tell it. And tell it honestly, all the good and all the bad. And that, my friend, is the most powerful part of all. she said.

That moment stirred something within that opened me up for what was next. And what was nextwas a movie. A movie, you ask? Yes. A movie.

First of all, Im not really a movie person, thats more my husbands thing. But I kept hearing about this movie Wonder. The more I heard, the more intrigued I was. I knew I had to see what it was all about. One day, the stirring popped up again. The feeling that I needed to see the movie and I needed to see it right then.

So I did something Ive never done (and swore I would never do), I went to the theatre, to watch Wonder by myself. I couldve taken someone, but I felt this was an experience I needed to have on my own. I was right.

For those who dont know, Wonder is a story about a boy named Auggie, born with a genetic abnormality. He is different, and hes trying to fit into a world where everyone else seems the samenormal so to speak.

I cried in this movie. Wept, really, from start to finish.

From the moment Auggie went to school the first day and his Mama whispers a silent prayer: Please let them be nice to my boy, to all of the heart-breaking life situations he faced simply because hes not like everyone else.

I cried because thats where we are. I have a child who is not like everyone else. And thats not easy. Honestly, so many of my prayers since Ellis got sick, were simply for her to recover and be likewelleveryone else.

About halfway through the movie came a line that rocked me to my core. In an instant I knew why I was there.

You cant blend in when you were born to stand out.

There it was. My Ellis.

Her life, laced with purpose from the very beginning, was powerful in every season, both the good and the bad. Its not everyone elses story, it was never supposed to be.

The negative commenter had simply missed the purpose. Our story is not about the ending at all. Its about the journey.

Its about a girl who lived when she was supposed to die. Its about a girl who continues to overcome. Its about a girl whose power is not in being just like all the other kids, but her greatest power is in all the ways shes not.

The perspective shift had to happen first, in me, her Mom. Once I made peace with where we were, I no longer felt the need to protect. Ellis story should never be hidden any way. It was always meant to be shared with the world, she was meant to be shared with the world.

So share her, I will. Every high and low, every battle and every victory. Her story doesnt lose power because of her challenges; in fact thats what gives it the most power.

For whatever reason, my Ellis was born to move mountains, to stand out.

Shes not like everyone else, and Im learning thats ok. She wasnt meant to blend in. She was born to stand out. Uniquely her. My baby girl. My little wonder.

*To hear more from Sarah, and to follow along on her journey, click HERE .

To see her life in action click HERE to view her Vlog.

Sarahs Memoir From Depths We Rise is available HERE .