Friday, December 9, 2011

Breath of Heaven

...must I walk this path alone,
be with me now, be with me now.
Breath of Heaven hold me together
be forever near me breath of heaven.

I listened to this song as I drove our littleLover to the hospital early yesterday morning.
Truth be told I was lonely, scared and thought several times about turning around.
And in my moment of weakness, I heard this song.

So I prayed the exact lyrics of the song.
Over and over.

...Breath of Heaven lighten my darkness
pour over me your holiness breath of heaven
for you are Holy, Breath of Heaven.

I dreaded these tests.
I knew they would be painful for our little guy.
And once again, he proved to be stronger than his momma.
After putting him under the x-ray they had to insert a catheter.
I was up by his head holding his hands and  as it was going in he looked back at me,
his little lip quivering and tears streaming down his face.
So I got as close to him as I could, put my lips to his forhead and sang. me be strong, help me be, help me
Breath of heaven hold me together
be forever near me, breath of heaven.

I kept singing and humming until it was over and he nuzzled into my chin and I told him over and over how proud he made me and how much I love him and how much Jesus loves him.
He simple looked at me, with his little lip sticking out and I thought my heart would break in two.

It's been a year since we first found out he was deaf.
It has been a year with many diagnosis.
With many doctors, nurses, therapists.
We met with a geneticist in August.
We had been told his inner and outer ear structure resembled CHARGE Syndrome.
When the geneticist walked in the room, she was pleasantly surprised.
After a whirlwind conversation with her she simply said we will wait on the blood work, but clinically I can not diagnose him with CHARGE Syndrome.  He only has one characteristic at this point in time (the ear abnormalities) and to clinically diagnose he needed 4 major symptoms or 3 major and 2 minor.

She scheduled MANY scans...heart, kidney, (already had EEG's due to his earlier occuring "seizure/migraine" activity), eye, etc.

She called back with relatively good news stating that all test looked good except one...his kidneys.
Follow-up would be needed.  Tests were scheduled but cancelled due to another seizure episode and his cochlear implant surgery.

As we proceeded with all the tests, we got confirmation.
He does have mutations in the CHD7 gene.
Genetically he has CHARGE Syndrome.

I remember talking to her on the phone and could tell she was a little perplexed.
She thought for sure he would test negative.
But he didn't.
Not much was left to do.
Per the doctors, we decided to let him get through his implant surgery/recovery first before proceeding with the kidney tests.

I had originally thought going into yesterday he had 3 tests.
There were only two tests run, but there were two parts to the second test.
He needed an IV for the second.
It was a disaster.
Two nurses blew 3 veins before they called in the IV team.
They blew the first and finally were successful with number 5.
Then I hear it.
"How old is he?"
I respond 2.
"Ma'am your son is incredible.  Normally by #3 we have to restrain them."
Not my sweet boy.
Every time they stuck him his little lip would pout, he would drop his head into my neck and a simple little tear would fall.

I realized as we were leaving the hospital yesterday that God is using our sweet boy in ways I don't understand.
As we walked by the nurses stand he simply signs...
"thank you."
They melt.
His nurse eyes well up.
The ER doc that was supposed to put him under sedation ran up to me and said she was sorry she got held up.
That all the nurses were talking about how gracious both K and his mom were.
I thanked them.  Wished them a Merry Christmas.
She responds..."no ma'am, it was our pleasure!"

...but I offer all I am
for the mercy of Your plan
help me be strong
help me be, help me.

After our visit to the hospital, we went straight to his Urologist.
The results of the tests indicated that he is experiencing reflux into both kidneys.
His small left kidney is a grade 3, the normal right kidney a grade 2.
The overall kidney function is good, within normal limits.
With the right doing the majority of the work.
Due to him never having a urinary tract infection and the fact he is circumcised,
from here we wait and watch.
Watch for any type of infection and the growth and development as he gets bigger.


One day I will tell him a story of a little boy who changed my heart forever.
He was kind and patient.
He had the cutest smile and dark eyes that seemed to draw people in.

That when people told him it would be hard for him to walk,
he proved them wrong by running.
That he touched many people by his strength.
I will tell him that God took things away from him and in doing so gave to others.
I will tell him this little boy had courage.
He never gave up no matter how many times he would fall or how hard he would hit his head.
I will tell him the silly things like the sound of his laughter and that he loved oatmeal.
That sometimes he would chase his sister around the house for hours and then sometimes you would find him in a corner by himself, content with a simple matchbox car.
I will tell him that God made this little boy as close to perfect as could be...

and then I will thank him for being that little boy that changed my heart forever.
A little boy that taught me about God's grace and mercy.
I will tell him that I am glad God gave him to this momma to love while we are on this earth...
because he is our breath of heaven!


  1. I am just overwhelmed with emotion as I read this Sara. He is so blessed to have you as a mom. And you are so blessed to have him. Our crosses we bear give us the chance to be more like Him. It is such a spiritual experience to hold your cross as I am sure you are feeling. Hold it and know that He is holding it with you.
    Many many prayers to you!

  2. Thanks for sharing you story.

  3. Beautiful post Sarah... I can tell the Lord is working deeply in you... in your spirit, in your surrender, in both of what you and don't understand about the Lord's purposes. I love reading...