Tuesday, February 16, 2016

I Needed to Write...

We have been in Georgia for over 6 months now- 
and I am forever behind in keeping this blog current. 

And Oh- 

the stories I could tell......

But tonight-

 I just needed to write...

I have been longing to sit down and capture the emotions swarming around inside my head and heart- 
but fear has always got the best of me...

I fear that my words will come out with a "pity party". 

I fear my words will hurt someone.
But my greatest fear- is speaking the words out-loud...

My eyes fill up with tears, just thinking about it. 

I feel as when the words are spoken- 

then thats it. 

But- I can't hold them inside any longer...

Here it goes.........

(((  The girls are progressing in their disease.  )))

There- I said it...

 and it hurts.

My heart clenches, my eyes burn and the air leaves my lungs...

This is so,
 so serious. 

They both have had a really rough go this winter- 
and the effects are starting to show. 

At first it was just a slight change.

A drop of a cup.

A sputter at the dinner table.

A, "Mom, please come help with 'such and such'..."
- knowing she was able to do it her-self just a few short weeks ago. 

Change and progressions of weakness... 

I easily find my-self going through the motions every day 
and just "dealing with it".

But, this last week...

 it has been rough......

Just tonight, Denalli was laying in her bed playing around while I was getting all the machines ready for the night.

She would raise her right hand straight in the air and while trying to "write her name" on the ceiling.

It would work for 1/2 a circle, 
then it would crash down beside her.

I sadly watched from a distance. 

She would try and try to make it go a complete round-
 to form the letter D- 

but she couldn't. 

Then the question came...

"Mommie- why does my arm not work any more?? See watch...."

She tried again, with all her might....

"It just falls down and I can't keep it up..."

Oh mercy.... 

Oh Lord.. WHY? 

Once again- 

Eyes burning, heart clenched and a sucker punch to the gut... 

<<(no words)>>

(What am I to say!?!)

"Keep working hard my dear- and just do your best..." 

She smiles and continues to try a few more times...


She knows... 

She knows she won't get it back.

Thankfully- she is strong and determined... 

And she will find a new way and conquer SMA once again. 

And then there is Ryka...

She has struggled the most these past few months-
Her body has adapted to SMA so much different than her sister.

She has never: Crawled, Stood, Walked, ect.

She can: Sit, she can sorta "Scoot" and she can slowly Roll. 

Thats it. 

An illness takes her down- SO much more aggressively. 

The beginning of November she spent 13 days in the 
PICU (Pediatric Intensive Care Unit) for RSV. 
And about 7 days in- she turned Septic...

It was horrible.... 

And it hurt her little body- 
more than we know. 

Since then:
We have seen a "rapid decline" in her functions.

Things she was once able to do- 
are slower, harder or not possible at all...

We have recently fought another major sickness 
since being in the hospital in November.
This time we were able to steer clear of the hospital- 

Due to us being able to place a feeding tube here at home.

And again-
due to the toll the sickness has placed on her little body, 
she has weakened to the point that

the NG tube has not been able to be removed.

She has lost a bit of her swallowing function- 
and she is having a hard time eating food and drinking water.   

This. Is. Tremendous.

this progression here- 

is life altering. 

The ability to swallow and not choke....

Have you thought about that?!? 

How many times do you use the simplest function on a minute by minute basis?

Take that away-


Make it weak, so that you are afraid to use it. 


I have no words.


When this realization hit me the other night- 

I cried. 

I cried so hard-

My heart cried. 

I couldn't breathe.
My bones hurt.

And my body ached...

I know this situation here will seam tiny as time passes- 

and I know others have it so much worse tonight...

But, right here- 

right now... 

It hurts.....

Today, we set up an "immediate appointment" to talk
 about G-tube placement. 

Again- time has a way of giving us perspective- 


Right now-

Surgery is Scary.

And it confirms the progression. 

And its more hospital time. 

And its More time the family is apart. 

And its taking away her perfectly soft tummy. 

And its plain Scary with all the junk that she has had-
 and the junk going around. 

And, And, And... 


Not one day passes- 

Not even one minute that goes by- 

that is a surprise for the Lord. 

He knows this!

He knows their pains, their fears, my heartbreaks
 and this journey in life. 

It doesn't necessarily make it "easy". 

We still have to wake up every morning and Face the Day.

We still have to walk through the appointments, therapies, schedules, routines, and day to day life...

But- I know there is a plan and a Greater Purpose.

I don't understand it.

Not one bit....

But it is there. 

And it is here.

Its in all the heartache, its in all the moments of joy,

 its in the way we now and the way we live each day.  

My hope is that you don't take what you were given for granted.

We all have our own stories. 

You are the author of yours. 

Make the best of it.


Blessings~ One BLESSED mommie