Friday, August 26, 2011

mama said there'd be days like this.

We're waiting on fall.
Hoping it will deliver.
Hoping it will produce fruit for my emptiness. 
 Beautiful oranges and reds. 
Brisk sunsets and crisp breezes that will blow sadness far from here.
Spring disappointed.
But fall is my friend.  He will come to my rescue.
Somewhere in my spirit is a hidden place screaming for redemption.

But I was reminded to "be still" tonight.  And to let God follow me. 
He always follows when we run.  Or rest.
I look at the photo of Harper above and I feel like Summer, although not what I expected, has had it's perks.  She learned to garden.  And climb up into my double stroller.
I taught her how to say "I love you" and she makes a kissy face with her lips and says "hey girl!" to Heidi.  And she throws a mean fit. 
She's lit up my world this year.

Today was a hard day after my long long night.
Back and forth on the phone with many different doctors resulting in the adding of a seizure med to Mabel's current. 
Now she will be taking Phenobarbitol and Keppra twice a day.
Pray that this does the trick for our girl.

Then the geneticist called with results from a more specific set of Mito tests. 
Out of the series of 4, three were normal.
The fourth, although they believe it to be benign, did show a mutation.
However {wait for it...}
It is one they have never seen before so there is no true way to know if this is the cause of all of Mabel's symptoms.

We will do a fatty acid blood draw next week and proceed with the muscle biopsy to confirm mito sometime in September.

Next week we will be admitted to a local children's hospital for a 24 hour PH probe and will then have an upper GI x-ray, as is required by the surgeons who will potentially place a feeding tube if the time comes.

So with the stress of last night and the stress of today...
I can't help it that I'm begging for FALL to knock on my door tonight and let itself in.
Candles.  Pumpkins.  Coffee.
Awhile back, Ashley gave me a journal to write in.  On the front of it is the cutest poem.  It's fitting for tonight--
The top row is what we know to be true.
The following row is often how we feel.
A kindhearted woman gains respect.
*something we can gain and feel good about.
God is awesome.
*even when circumstances aren't.
What we suffer now is nothing to the glory He will give us later.
*better late than never.
He will give you strength to endure.
*that's so much better than 'hang in there.'
We boldly say what we believe.
*we never give up.
We are not afraid.  We stand true to the Lord.
*god knows our hearts.
When I am weak, then I am strong.
*when the coffee is weak, then I am cranky.
Consider it pure joy whenever you face trials of many kinds.
*seriously, how many kinds are there?
All things work together for the good.
*why cant they feel good?


Unknown said...

Candles, pumpkin, and coffee!!! Yes.=) I can't wait either, and I'll be praying for sweet mabel and fall.

brandy said...

ohhhh I can't wait for fall too!!! Everything about it is lovely! ...Praying for you all and sweet Mabel!!!