Thursday, February 2, 2012


There is one thing from the Rick Santorum video that I'd like to clarify.  He describes Trisomy 18 as being "like Downs Syndrome".  Technically and scientifically speaking I suppose they are alike in that they are both triplicates of chromosomes.  Downs Syndrome is a triplicate of the 21st chromosome.

Adam and I watched this video together again last night and that statement didn't sit right with us.  Let me back up and explain why...

At 20 weeks we had a routine sonogram to determine the sex of our baby.  At that time they saw 4 (what they call) markers for chromosonal abnormalities.  My doctor explained that if he saw any one of the four alone he would think nothing, but the 4 together indicated we needed to take a closer look.  He referred us to a specialist and recommended we do a blood test that day.  We only agreed to the blood test because it was 2 weeks until we could see the specialist, and the blood test results only took 2 days.

2 weeks seems like a lifetime when you are waiting to see if your baby is going to be okay...2 days isn't that much better either.  Just a quick note here because I'm sure it will come up later: I promised myself when we left the doctor that day that I would NOT Google anything.  I knew all I would do is make myself worry even more.

The blood test came back negative.

When we saw the specialist he did a very long sonogram...over an hour.  Then he confirmed that Battley indeed has some type of chromosonal abnormality.  My mom and Adam were in the room when he told us what they saw.  I remember sitting in the chair and looking at him speak.  I don't remember a word he was truly an out-of-body experience.  I felt like I had floated up and was looking down on these people I didn't know and felt so sorry for.  We elected to have an amniocentesis that day so that we would know for sure what we were up against.

If you don't know exactly what an amnio is, it's where they draw amniotic fluid from the mother and grow cells in a dish for a few days.  There are 2 sets of results.  First the FISH results in possibly a few days and then the final results in 2 weeks.  This is done because it is a test of the baby's DNA so it's accurate and not a guess.

It was purely for planning purposes so that we could help her if we could.  Our doctor said that 56% of patients elect to "terminate the pregnancy" when they receive news like we did.  Personally our minds never went there...that's our DAUGHTER.  Her name is Battley.

So we head home the day of the amnio...I'm sure I got in the bed that day and didn't get out for anything.  This is where Rick's comment comes back into play.  I prayed that day and the days after for her to have Trisomy 21...Downs Syndrome.  I know Adam did too.  A baby with T21 can live a long, happy, and healthy life.

Don't get me wrong...I'm not upset at him for making that comment.  They are also similar in that I'm sure that is not the life any parent dreams of for their child.  It's just that they are totally different.

Changing Subjects...

The book I posted about yesterday that was written by Angie Smith...her husband, Todd Smith, is a singer for the Christian music group Selah.  I have never heard of them before reading this book.

There are 2 things I want to say about this that I didn't talk about yesterday...

First, the name Selah...I didn't know how to pronounce it or what it meant, if anything.  So I looked it up in the dictionary on wikipedia.
Here are the main points:
is a word used frequently in the Hebrew Bible, often in the Psalms
is a difficult concept to translate
probably either a liturgico-musical mark or an instruction on the reading of the text, something like "stop and listen" or "pause, and think of that"

What an interesting name?  How often do we actually PAUSE and meditate on something in this busy life?  Just a thought!

Next, Todd wrote a song for their daughter Audrey Caroline.  The title of the song is I Will Carry are the lyrics:

There were photographs i wanted to take
Things i wanted to show you
Sing sweet lullabies wipe your teary eyes
Who could love you like this?people say that i am brave but i`m not
Truth is i`m barely hanging on
But there`s a greater story
Written long before me
Because he loves you like this

So i will carry you
While your heart beats here
Long beyond the empty cradle
Through the coming years
I will carry you
All my life
And i will praise the one who`s chosen me
To carry you

Such a short time
Such a long road
All this madness
But i know
That the silence
Has brought me to his voice
And he says

I`ve shown her photographs of time beginning
Walked her through the parted seas
Angel lullabies no more teary eyes
Who could love her like this?

I will carry you
While your heart beats here
Long beyond the empty cradle
Through the coming years
I will carry you
All your life
And i will praise the one who`s chosen me
To carry you


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