Monday, September 17, 2012

We Matter to Him

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.



18 comments:

rplatt said...

Amen to that!!!!

Joann Mannix said...

I've been away on an extended vacation, (much too extended when it comes to being away from my kids). I've unpacked, started the laundry and I'm just sitting down to catch up with all my friends. Your place is, of course, one of the first places I always go. And what a poignant, heartfelt post to come back to.

You have said it so eloquently. Yes, Emily is so much more than the labels that have been assigned to her. She is Emily. Beautiful, Brave, Sweet, Warrior Girl, Emily.

I am so proud of you for every hill and mountain you've climbed up and over this past year, both for Emily and for yourself. You all are always and forever in my prayers.

MamaMags said...

As I type this I can't stop the tears. I love how eloquently you have stated your feelings. Emily is MORE than just a daughter of God. She is one of the valiant spirits that God knew could touch lives and help bring more of His children back to Him. He knew it would take one of his most special angels to accomplish this difficult task....Enter Angel Emily.

Ali said...

Ok, you got me. The tears are flowing. How beautifully written and so so touching! Thank you so much for sharing this experience.

wjmom said...

Beautiful.

Beth Zimmerman said...

Crying Noelle! Oh how I love YOU! You are precious and God has given me this huge love for you ... and those precious to you! I will pray with you that Emily will refuse to allow herself to be limited in anyway by any labels ... except the one that says she is God's child (and He doesn't make mistakes!).

Natasha said...

This is beautiful.

Anonymous said...

Beautiful !! Wish I had the gift to express my thoughts and feelings as you do. Emily has been so blessed to come into your family.

Elizabeth said...

Thanks, Noelle.

xo -E

Angee and Thom said...

absolutely!

Anonymous said...

Emily?

Are you talking about that little girl with personality plus? The one who makes a whole lot of people smile or tear up or think hard? The one who is already making her mark on the world? The one with the amazing parents?

Oh, THAT Emily. Yeah, I definitely know who she is.

Leslie in CA

pauline said...

Noelle,

Thanks for sharing! Emily is perfect and a beautiful girl that is loved. I personally hate labels, I have spent my life assuring my children that they are special and teaching them about their Heavenly Father.

You are one amazing mom! Keep up the good work.

Love and miss seeing you!

Christina said...

I LOVE this post! We all matter have a special role to fill in this life. What a great blessing it is that we can learn from each other. Hugs!

Shan said...

How much more perfect could she possibly be?!

*sigh* I am annoyed and upset and hurt for you that the hospitals haven't found a way to manage their records so you don't have to go through the questions every. single. freaking. time., and that Emily's therapists are not the sort who understand how to manage both sides of their patient's abilities. (You should seriously mention it to them and/or their supervisors, because you cannot be the only person who realizes their lack of balance. There are great therapists out there who can accomplish the same, if not more, because they do understand how importance their own outlook is to the process.)

Sending love.

Anonymous said...

Thank you so much, Noelle, for writing this post. I really needed to hear this today. I think we all struggle with feelings of self-worth. We all want to be perfect, but no one is perfect. You are so right that being imperfect does not lessen our value one iota in the eyes of God.

Emily is perfectly adorable, though!

Marie

Lalis said...

AMEN!

Mr. Thompson and Me said...

Amen! And what a gift she is.

Like you, my dear friend.

Amy said...

I love the adult session of stake conference. Every time. Also I love you for knowing "the only label that matters". LOVE this.