Last weekend, on somewhat of a whim, I did my hair, got dressed up, and attended of all things, a church meeting, with my mom and dad, and some of my siblings.
It wasn't a typical every Sunday kind of meeting, but a special one, held just for adults on a night other than Sunday.
My sister shared her Smarties, and we settled in for two hours of spiritual enlightenment...at least that was our hope.
A man stood to speak and his voice drew me in.
He wasn't an eloquent speaker.
He didn't quote many scriptures.
He didn't recite his talk from a page full of words.
He stood at the pulpit and humbly spoke from his heart.
He told of a time in elementary school when he was in the special ed class for reading and math, and of the time his teacher told his mom that he would never be college material.
He told of another time, a few years later, when he took one class he knew he would be good in, and when he saw his final grade it was a C.
He told of his first day of high school, when he was seated waiting for a class to begin. Two girls next to him were passing notes, written in letters big enough that he could read them.
"What do you think of the boy in row four, seat four?"
He counted and realized that was his seat.
The note made its way back to the sender and this is what it said, "He's alright. Nothing special."
The man got emotional at this point and stopped speaking for a minute.
"The world will label us. People will do everything they can to mold us into the label they've assigned to us."
"Don't let them," he said.
He said this:
"My teachers never knew that I would go to college. That I would have a successful career. They never knew that I would become best friends with _________, and that together we would spend two years as missionaries in South America. Those girls didn't know that I would marry an amazing woman, that we would raise good children who love God, that I would ... "
...he continued for a few more minutes and then said, "They never knew that I was more than their labels. They never knew that in the sight of God the worth of my soul is great."
* * * * *
My heart has come a long way in the past year.
I have healed; I have healing yet to do, but I am so much better than I was.
The pain doesn't hurt as much; and the hard days are much fewer than they've been.
But if I were to open up one of the corners of my heart, you would see a corner that hasn't healed...a corner that still hurts far more than I want it to.
And if there is one thing I still cry about, it's this corner.
It's hard to explain and in my attempt to try, I hope you won't think less of me...
...it's the love I have for Emily...the dreams I have had for her since the day we were told 'it's a girl'...the hope I have for her life...
It's all of this that has made this corner of my heart so fragile.
My beautiful girl...my incredibly brave and strong little girl...she's been labeled her entire life.
In the medical world she has never been Emily first.
She is a heart defect first, DiGeorge Syndrome second, and Emily, always last.
When the hospital calls to schedule a procedure I always answer the same questions:
"...yes, she has Tetrology of Fallot."
"...yes, she has DiGeorge Syndrome."
"...yes, she's had three open heart surgeries, one cardiac catheter, and two non-heart related surgeries."
"...yes, she was hospitalized for three months."
and on and on and on
And while I know it's necessary and I know why they're asking the questions, I want to yell, "Her name is Emily! And she loves her elephant binky, Mickey Mouse, and her Daddy, in that order."
I want to tell Emily's doctors that she is more than what their textbooks tell them she is because of her syndrome.
I want to tell her therapists to stop focusing on what she isn't doing, and for one day just focus on what she is doing.
I want to tell them that she's alive, she's healthy, she's happy, she's a miracle, and that she's so much more than 'developmentally delayed.'
And on occasion, I want to remind some of those who are closest to us, that Emily is more than the limitations she was born with...she's more than a syndrome, or a heart defect.
It breaks my heart over and over again that my incredibly perfect little girl will spend her entire life fighting against the labels she was given at birth.
* * * * *
"...the worth of souls is great in the sight of God."
As I sat, with tears pouring down my cheeks, listening to a man I didn't know tell me these words, my heart felt peace.
And I came away from that meeting determined to spend the rest of my life teaching my little girl that the only label that matters is the one that says that she is a daughter of God.
And that to Him...and to her Mommy and Daddy...and to those that love her most, she is perfect.