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Sunday, November 18, 2012

Number Games

It's been over two years since I've posted, so forgive me if I'm a little rusty.

It's always awkward when it's been awhile, isn't it?  You run into someone you haven't seen in two years and you're like:

"Hey!  How are you?"
"I'm great, how are you?"
"I'm great!  So great to see you!"
"So great to see you too!  How have you been?"
"We've been great!  Really, really great. You?"
"We're great.  Doing just great."
"That's great...."
"Soooo great."
"Well..."
"Well..."
"Well, I've gotta run but it was SO GREAT to see you!"
"It'd be great to get together soon. It's been too long."
"Great idea!  We'll talk!"
"Great. Bye!"

I so don't want my return to blogging to be like that. Because you know your first thought after that conversation is:  I will pretty much die if I have to spend an entire evening with that woman, and that was the stupidest conversation I've ever had.  Note to self, switch to another grocery store.

But whatever.

I'm back and it's awkward because I don't know where to start or how to start, or if anyone is even reading this for that matter.

But, they say you gotta dive right in, so here we go.

Patrick and I are THIRTY-TWO years old.

Sweet L is TWO and a half.  In her own words: I two!

Baby R is NINE perfect weeks old.

Dis, the Original (yet often neglected) Gangsta, is EIGHT years old.

Just some basic stats -- everyone has them.  Nothing to really pay attention to because they are what they are.  But in the last SEVEN months, stats have taken on a whole new meaning for us.  We've discovered that numbers are a powerful thing.

Ironic, for someone who loathes math.  But that, I'm discovering, is life.

SIX months ago, during a Level TWO ultrasound, we were told that our unborn baby boy might have a heart defect.

NINE long days later, it was confirmed that he did in fact have a heart defect, and that it was a major one. Oh, and that it was a defect that is often linked to Down syndrome.

ONE day later, I spoke with my perinatologist for THIRTY minutes on the phone, and he told me the chances of him having Down syndrome are now FIFTY/FIFTY.

THREE days after that, I was one of the FIRST people in Louisiana to have a brand-new, non-invasive blood test to determine which HALF of that equation we fell into.

TWO terrifying weeks later, I received a ONE minute, THIRTY second phone call that will forever serve as my before and after in life.

At EIGHT-FIFTY-ONE in the morning on Monday, June EIGHTEENTH, the doctor called to confirm that baby R was, in fact positive for Trisomy TWENTY-ONE.

Down syndrome.

THREE hours later, my husband and I sat for THIRTY quiet minutes and held each other while I uncontrollably sobbed.

TEN days later, we found ourselves in Massachusetts, having SIX hours of meetings with the good doctors at Children's Hospital Boston about our son's inevitable open heart surgery.

Approximately TWENTY doctors appointments, THREE months and several THOUSAND worries later, our sweet little boy was brought into this world weighing SIX pounds, SIX glorious ounces.

FIVE hours later, he was taken to the NICU.

FOUR awful, terrible, miserable, lonely days later, he came home to us. Where he belongs.

We have spent the last NINE weeks in isolation, with TWO more to go until his open heart surgery.


*******

ONE in every SIX-HUNDRED and NINETY-ONE babies is born with Down syndrome.

This stat would be higher, but INNUMERABLE pregnancies are terminated after a prenatal diagnosis of Down syndrome.

The chances that we would have a baby with Down syndrome were ONE in NINE HUNDRED.

AV Canal is present in TWO out of every TEN THOUSAND births.

Congenital heart disease is present in ONE HALF of all children born with Down syndrome.

TWENTY percent of children with Down syndrome have AV Canal.

Alternately, ONE-THIRD of all children with AV Canal have Down syndrome.

Most children with AV Canal have repair surgery by the time they are SIX months old.  R will have his surgery ONE week before he turns THREE months old.

There is a NINETY-SIX percent survival rate for his surgery, with only a TEN percent chance he will have to have follow up surgery.

I'm a MILLION percent sure that he'll be okay, but that's only because I have ZERO choice but to think that way.

(TWO to THREE glasses of white wine a night help with that.  I just wish I could chain smoke about FIFTY cigs. A girl's gotta have some type of outlet.)

All of that said, I am ONE HUNDRED percent positive that I am the most blessed woman in the world.

I have learned INFINITE lessons through all of this, with THOUSANDS more to come.

My brain has a MILLION thoughts swirling around and this is just ONE of many posts in which I will tell you all about them.

I have ONE amazing husband and TWO beautiful, perfect, delicious children.  ONE of whom eats every THREE hours and stops my heart when he smiles.  The other who asks me NINE MILLION, SIXTY-FIVE THOUSAND, THREE HUNDRED AND SIX questions a day and never ceases to amaze me.

I have changed in COUNTLESS different ways, but I'm still totally me. A more grateful, more aware, more understanding, more loving, better me.

(I'm also more worried, more annoying, more protective, more exhausted and more neurotic. But that's not relevant to this particular discussion.)

So, my life?  My very new, very different, very much the same life?

Other than trading my heart for his, I wouldn't change ONE single thing.



6 comments:

  1. Love this and so happy to see you back at chronicling. Welcome to the world, little man Reid!

    What I love about this post is that it reflects the new you, which is definitely stronger and wiser but also funnier (if that's possible), smarter and to use your words, a bit more neurotic. The world would be so lame without it.

    BTW- Did you know that the noun for neurotic is neurosis? Had to look it up this morning to draft this little comment. I encourage you to not google neurosis, it won't end well.

    You may have overlooked a key number/numbers- the Dozens or even Hundreds of close friendships you and Pat have developed over a lifetime. Close friends that love y'all, pray for your daily and know that with moderate to heavy wine consumption, 2013 is going to rule for you, Pat, Elle, Reid and even sweet Dis.

    Flying Squirrels Beware!

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  2. So glad the blog is back! Who knew you'd end up a numbers person? Fran Procell would be proud. Such a beautiful post. Can't wait to see you. xo

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  3. Welcome back, Boo! I'm INFINITELY blessed to accompany you on this beautiful journey....

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  4. We know that your journey will bless our lives in ways we never expected, and we can't wait for Baby R's heart to be well! The Raineys are ridiculously excited for the time when we can have all FIVE of our babies together :) Love you guys!

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  5. Where do we start? You have come SO FAR already. I remember June when we all were in a state of bewilderment and disbelief.....

    The good Lord knew what he was doing when he blessed you with this amazing little boy. He needs loving, nurturing and amazing parents; he has found them.

    You have helped us to understand the challenges and joys that await life with Reid and Elle. You refuse to talk about limits, you embrace the positive and the joyful. You use numbers. I see one number- zero. No limits to the love he and Elle will feel, no limits to the support, the encouragement he and his sister will have as they journey life's path.

    There can be no greater achievement than raising children who will be a positive life force for the future of this world.

    We thank you for your strength and your love. WE offer you ours.

    Nonnie & Bubba

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  6. I am so proud to call you my friend and was so touched by this post. Elle and Reid are so lucky to have you! and super excited to know you have a blog so I can keep up with you!!

    Love,

    Julie

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