Dear Ella – one year in

Dear Ella,

It was one year ago that you first needed crutches to be able to stand. Your legs were so strong, and yet your quad muscles refused to work. You tried to stand, and your muscles quivered. We didn’t know it then, but they were never going to be that strong again.

I keep remembering all of those sleepless nights I spent researching and looking for explanations of what was happening to your body. We moved you into our bedroom so that I could get up every half hour and check your breathing. I remember being so terrified that this unknown whatever-it-was would leap out of your legs and hit your diaphragm. I would cradle you in my arms as you slept and watch the steadiness of the rise and fall of your chest. I promised you in those midnight hours that I’d never let you die alone, smothering in the quiet of the night just feet away from where I slept. And so I didn’t sleep.

During those early days, you would cry about the spreading weakness in your legs and ask me, “Is this how my life is going to be? What if I can’t ever walk without crutches ever again?” I dried your tears and promised that your life would be a good one, even though I didn’t believe that at the time. What kind of life could there be for you as a crippled girl, I wondered.

I keep thinking back to the nights when you’d haul yourself up into our bed, lay your head upon my chest and sigh deeply. “I’m just so tired…,” you would whisper. I would lay my cheek against your hair, and let my tears fall silently. I lived and walked in fear in those days, too afraid to ask God for help. Too afraid that his answer was ‘No.’

And then there was the first day with a wheelchair. It was an awful hospital chair, but we didn’t know enough to know the difference. I’ll never forget the relief on your face as you sank into the seat and set your crutches aside. We waited too long to make that move, and for that I’m truly sorry. It had felt in my mind like a defeat, as though we were letting this whatever-it-was win, as though we were admitting that your legs were no longer functioning. It seems silly to me now, but it seemed so important back then.

Here we are a year later, and I’m amazed at how much has changed since those quiet and fearful days. The helpless waif I feared you would become never materialized. Instead you became stronger that I’d even dreamed possible. You have depths of strength and wisdom within you that I’d never suspected were there. While paraplegia hasn’t ended your life, it has certainly turned it on its ear.

The little girl who once sobbed at the approach of strangers has become a composed young woman on a mission. The world that once looked frightening has become your mission field as you set out to show the world just how “normal” your life really is. I hate to tell you this, but you’re failing miserably.

Nobody who knows you could possibly think that your life is normal. It is extraordinary. You have touched so many hearts and minds in this past year, not by anything specific you did, just by refusing to stop being yourself. As Mrs Snyder said the other day, you’ve “grabbed this thing by the throat and made it your b*&$%.” You’ve fought a dragon, my love, and you won.

Here we are, a year later, and I find my self in exactly the opposite place from a year ago. I’m not staying up at night worrying what will become of you, instead I sleep soundly and dream of all that you will become.

God bless you, my sweet girl. I’m ready for our next big adventure.

Love forever and a day,

your mom

P.S. to my readers – We know that people have lots of questions for us about what happened, how we coped, what Ella is up to now, and all kinds of crazy things. I’ve gotten Ella to agree to a podcast/vlog post so that we can answer your questions. We have some that we get emailed to us pretty regularly, but load us up with more. What do you want to know? We’d love the chance to tell you.