Thursday, September 29, 2011

The Heart of the Matter

It was nearly 36 hours after her birth that I really saw my Emily for the first time.
As I stood at her bedside I took in every part of her.
Her ears were small...like her daddy's.
Her toes looked just like her grandma's.
Her fingers were long and beautiful.
Her mouth was the tiniest mouth I had ever seen, but it was perfect for her.
She was mine...and she was alive...and I realized that the physical and emotional pain of the last few months, days, and hours had been worth it.

A nurse stood nearby and heard Jason and I talking about our baby.
In a matter of 10 seconds that nurse changed my world.
"You know she's being tested for Di'George Syndrome don't you?"
I did, but I was uncertain of what that had to do with the conversation Jason and I had just had.
Everything we mentioned: the small ears, the tiny mouth, the long fingers...they were all signs of Di'George Syndrome.

Later that night Jason sat on the edge of my bed and held me while I cried.
"Why do they have to take everything away?" I asked in a broken voice.
"For once, why can't they let my baby girl just be a baby girl?"
"Why does she have to be a medical condition every single time?"
And in my mind I was thinking back to all of the ultra sounds we had had...to all of the follow up appointments with the cardiologist...to the echo cardiograms...to the non-stress tests...
Pregnancy milestones that were supposed to be filled with happy anticipation, had been filled with bad news and worry for me...and now, when we were supposed to be filled with peace and joy at the birth of our baby girl, we were filled with dread.

The next few days I healed physically but not emotionally.
I scoured the internet for information about Emily's possible syndrome, and with everything I read, my world crumbled.
If you have any love at all for my little Emily, and if you're reading this you do, don't Google Di'George Syndrome.  I promise it will break your heart, or at the very least, hurt it a little bit.

I knew that Emily's test would come back positive for the syndrome; Jason knew too.
But neither of us shared that with each other until after we knew for sure.
We were standing next to Emily's bed in the NICU when the doctor came and pulled the curtain around us to guarantee privacy.
She put her arm around me and said, "I'm sorry but the tests came back positive.  Emily does have Di'George Syndrome."

Di'George Syndrome holds a wide spectrum of possibilities...from really bad to really manageable.
Although we won't know where Emily falls on that spectrum until she tells us, we've been told that Emily has what they call partial Di'George.  That word partial gives me peace.

In a nutshell...Emily is missing a part of one chromosome.
That small deletion is the reason Emily has her heart defect.
The deletion means that Emily's immune system will most likely be compromised.
The deletion means that Emily will probably have developmental delays: with her crawling, her walking, her talking, etc.
The deletion means a lot of other things too...
And all of it burdens my heart more than I can ever begin to tell you.

It took days...probably weeks...before I could look at my baby girl and see something besides the syndrome.
One night, when the heartbreak was especially bad, I called my mom.  She could barely understand me through my sobs.  She waited on her end of the line until I could get the words out.
My mom has been on the other end of that line more than once.
She's held me in her arms more than once.
She's cried with me a lot more than once.
And more than once my mom has shared with me this simple truth:
"It doesn't matter what Google or the doctors say.  It DOESN'T matter.  Emily will be exactly who God intended her to be."

I've had almost 2 months of loving my baby girl, and I am secure in the knowledge that my mom is right: Emily WILL be who God intended her to be.
However, my heart is still fragile.  The heartbreak is still there...on almost a daily basis.
There are times when I look in my baby's eyes and the pain I feel is so raw I don't know how I can make it through.
The uncertainty of Emily's future eats at me until I think I'm going to go crazy.

Jason has been my rock through all of this.
Jason has no fear for Emily's future.
He barely even thinks about Emily's possible challenges.
He lives in the moment and enjoys everything about it.
And he knows that if challenges arise, we'll handle them.  We'll love our baby girl through them.
And on a very regular basis he assures me that Emily will bring us nothing but joy and happiness.
I believe him.  I do.  But there are times I have to cling to his words like they are my lifeline.

I have hope that one day the pain won't be so fresh.
I have hope that one day I won't feel like I'm living a really bad dream every single day.
I have hope that one day Emily's setbacks will seem like that, a setback, rather than something so much worse.
And I have hope that one day I will feel like smiling every day, all day.

I cling to the good moments like they might never come again, and I thank my Heavenly Father for helping me to recognize them.
I celebrate every positive step my baby girl takes and I thank Heavenly Father daily for my blessings...because they are many.

Not too long ago I worried that if people knew about Emily's syndrome they would treat her differently or love her less.
I've since learned that if anything, people will love my Emily more.  Not because of the syndrome, but because she is Emily...my little fighter, my little angel, and my incredibly huge gift from Heavenly Father.

17 comments:

Elizabeth said...

Emily is such a beautiful baby. I love it when you post pictures of her (except for that one where she was sedated after her surgery. That one just made my heart ache). Whatever the challenges, God will make you equal to them. And when I look at pictures of your beautiful, sweet little girl, I see the incredible joy that she will bring to you. I wish I could take away the heartache for you. But since I can't, I'll pray for you to have more moments of peace and happiness. I'm so glad you have Jason.

xo -E

Amanda said...

When I first heard of my son's diagnosis my world, as I knew it, ended. But like they say, it's a spectrum and over the years he managed to crawl up to a fairly manageable edge.

I strongly wish and pray the same for Emily.

Joann Mannix said...

Noelle,

This made me cry. Not because of the diagnosis.

But because of God's wisdom. Because He knew what He was doing when he chose you for this very special baby girl.

That spy husband of yours is so wise. Hold on to his wisdom and let him guide you as you live each day, treasuring beautiful, perfect Emily.

And your mom, oh your mom's words! Could there be any finer truth? Emily is exactly who God wants her to be.

And you get to be her mommy. How beautiful.

My friends have a daughter with a chromosomal deletion. She is the joy of their lives. She is now a thriving, happy teenager. They always say that since the minute they brought her home, she has enhanced everything in their life like they never thought possible. They say she gave them the gift of seeing the absolute joy in living in the moment. Because of their girl, they went on to adopt another child with the same issues. Their house is one of the happiest homes I know.

This post Noelle, was one of the most beautiful things I've ever read. Thank you for sharing. I can see God's absolute wisdom, there in your words. Emily is exactly who God wants her to be and oh, how I love that little girl. And her mommy.

Sandra said...

Noelle,

I want you to know that we all love you, Jason and Emily. We pray for your little family. And knowing your, and her burdens helps us pray more effectively. And your mom is right- it doesn't matter.

You are dealing with so much and what you are feeling is perfectly normal. Remember that not only are you healing from giving birth, you are healing from surgery, healing from pregnancy and all that does to a woman's body.

But you are also grieving. You talk of all the milestones that should have been filled with happiness and celebration but instead were filled with bad news and sadness. Well, all those moments were taken from you and you are grieving the "should have beens" and what you don't have. And that is ok and normal.

But you are also learning how to embrace and love what is instead. Put all of that together and that feels overwhelming to me to just think about, let alone live.

So this is what I want you to do: let us share it with you, let us help you carry this and pray for you so Father can help you carry it as well. Then, as a wise woman stated:

" have hope that one day the pain won't be so fresh.
have hope that one day you won't feel like you're living a really bad dream every single day.
have hope that one day Emily's setbacks will seem like that, a setback, rather than something so much worse.
And have hope that one day you will feel like smiling every day, all day.

cling to the good moments like they might never come again, and thank Heavenly Father for helping you to recognize them.
celebrate every positive step your baby girl takes and thank Heavenly Father daily for your blessings...because they are many."

I love you, sweetie.

Karen said...

Your mom is one smart lady. God has a plan for each and every one of us. He knows you and He knows that baby girl he gave you. Trust in Him that your journey together will be what you both need. I hope you feel the love I have for you and your family!

emily clark said...

Thank you for this post! There is power and truth to what you shared. I shared some of your thoughts with my high school students today. We need to be gentle and pray for heavens eyes as we live and learn with each other. Thank you and know that we are thinking and praying for you.

adrienzgirl said...

As I have told you many times, Emily was saved especially for you and Jason. Special parents for an extra special Spirit, and an extraordinary job.

I know it isn't comfort to lean on the knowledge that the Lord will never give us more than we can handle. Although that's true, Noelle, take some credit where credit is due. The Lord knew YOU would be the perfect mom for His special daughter. The Lord knew YOU would have the strength to help her with her fights. The Lord chose YOU above all the others to do THIS job. What an honor. How special YOU must be, beyond what we all know, to be chosen to mother, protect, teach and love this perfect little fighter.

As always, I am humbled and honored to know you. To call you friend. To strive to be even a millimeter as faithful as you are every single day!

Much love and comfort to you!!

The Broderick Family Blog said...

There was a family that I was teaching on my mission that moved from Columbia to England so that their son with Di'George's could have an important heart operation. They were working hard to save 10,000 British Pounds for the operation. I was so amazed by the love that they had for their child to move to a country with a language not of their own to help their son. What a blessing it is that you will have access to some of the best medicine to help little Emily.

Jaycie said...

You have a very wise mother

Shan said...

Even though our situations are vastly different, the fears you have about people just seeing Emily for her condition are very similar to worries I have about my son. Too, I have trained myself to accept and appreciate the good times when they come... and to remember what good things are possible when I am struggling again.

Big hugs.

Julie said...

And hubby, very wise. Lean on them Noelle, lean on the Lord. He knows what he's doing and just who he choose to be little Emily's mommy and daddy.
One day at a time my dear, just one day at a time. My book I'm reading says live in the moment, try to to look ahead, just enjoy what's now. It's hard but you can do this.
Take care and God Bless!!

pauline said...

Noelle,

Thanks for sharing your burden, we are here to help lighten your load. You are in our prayers daily. I would like to share with you the following poem:

May the Lord Bless and Keep You

To be in God's keeping is surely a blessing,
For though life is often dark and distressing,
No day is too dark and no burden too great
That God in His love cannot penetrate.
And to know and believe without question or doubt
That no matter what happens God is there to help out,
Is to hold in your hand "the golden key"
To peace and to joy and serenity! -Helen Steiner Rice

Through your blogs, I'm coming to know, admire and love you and your family. Thanks for your great example of being a mother.

Mr. Thompson and Me said...

Friend - you are my hero.

I love you.

emilia. said...

thank you for writing this. your little family is beautiful. especially that little em.

mum2brady said...

Found your blog via my friend, Sandra. I have a couple of friends who have kiddos with Di'George - I will pass your blog on to them and maybe they will pipe up :) Jayce is 10 and Mia is 3!

And I, too, echo what your mom says - Emily WILL be who God intended her to be!

I hope she is home soon - we will keep her in our prayers!!!

Christie and Brady :)

le Chef said...

My niece was born premature, with an extra chromosome, and all most people see when they look at her is a condition.
When she was very little I held her at a coffee shop while my sister interviewed for a job. I found myself trying to hide her away from passerby's, because their looks and whispers angered me. This was a BABY! How could they be so heartless? Then I realized I too was only seeing her for her syndrome. I shouldn't hide her away from the world, because she has just as much right to it as anyone. From that moment on I introduced my niece; Sidney, and the world can do with it what they will, but I will not see her as less than, or a syndrome. You are 100% right. Emily is baby Emily, daughter of Jason and Noelle. She has fingers and toes, and the lengths don't matter.
I'm reading this after a week of my own daughters syndromes made themselves manifest again. I know my daughter, I know her heart, her mind, her spirit. I knew going in that the new doctors she was seeing this week were only going to see symptoms .. diagnosis'. And I had none of it. I insisted they treat her with dignity and humanity, and the ones that couldn't grasp that this was a beloved child, and not some science experiment, were told to leave.
Hold your head high Noelle. Know your daughter, and that will be enough. She is not Di'George, she IS EMILY. Period.
I had an inkling earlier this was what you were referring to .. so I already looked into it, and I'll tell you this; ignore what you read online, because it can't possibly define Emily. Let it go. Let Emily unfold her personality in her own time and way, and regardless of any diagnosis, she will fly. I promise you. And watching that flight will be the most amazing thing you've ever witnessed.
Emily is EMILY. She only HAS Di'George Syndrome, she hasn't BECOME it. Funny thing about humanity, we retain it despite the labels.
Your a good mom. I have every confidence in you.
(Yes this was long, but it's also a few days old, so I figured being the last commenter gave me extra space ;)

TheBlogWriter8 said...

Do you know that I read each update from you as soon as I see it? The only problem is that I cry, mark it as unread in my reader to comment later and wait for a time when I can say something sensible. I love your strength, faith, wisdom and patience, Noelle. I hate when I can't find words. But I think I know why this is- there are few people in the world that I just listen to and don't feel the need to advise (because it might not be my place to do so). My sister tops that list. You surely figure somewhere there, too. So... Just know that I'm listening, praying, wishing and believing in all the goodness there is. Lots of love!