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 hadn’t.
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 she’s my daughter. This wasn’t the first negative thing I’d heard about her and I knew it wouldn’t 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 apart…her.
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 I’m completely at peace with that, you thought wrong. Some days wrapping my brain around it all still brings tears to my eyes. Quite simply, it’s the furthest thing from fair, for her-and for us.
For nearly 6 months I didn’t write anything about Ellis’ continual journey. I didn’t 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 I’d 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 isn’t 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 next…was a movie. A movie, you ask? Yes. A movie.
First of all, I’m not really a movie person, that’s more my husband’s 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 I’ve never done (and swore I would never do), I went to the theatre, to watch Wonder by myself. I could’ve taken someone, but I felt this was an experience I needed to have on my own. I was right.
For those who don’t know, Wonder is a story about a boy named Auggie, born with a genetic abnormality. He is different, and he’s trying to fit into a world where everyone else seems the same…”normal” 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 he’s not like everyone else.
I cried because that’s where we are. I have a child who is not like everyone else. And that’s not easy. Honestly, so many of my prayers since Ellis got sick, were simply for her to recover and be like…well…everyone 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 can’t 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. It’s not everyone else’s story, it was never supposed to be.
The negative commenter had simply missed the purpose. Our story is not about the ending at all. It’s about the journey.
It’s about a girl who lived when she was “supposed to die”. It’s about a girl who continues to overcome. It’s about a girl whose power is not in being just like all the other kids, but her greatest power is in all the ways she’s 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 doesn’t lose power because of her challenges; in fact that’s what gives it the most power.
For whatever reason, my Ellis was born to move mountains, to stand out.
She’s not like everyone else, and I’m learning that’s ok. She wasn’t 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.
Sarah’s Memoir “From Depths We Rise” is available HERE.