Staying in the Strugglle

I just finished watching 65_redroses, a documentary about Eva Markvoort, a Cystic Fibrosis patient. The movie documents Eva's life before and after transplant.  I could relate to her fears and her hopes. I could relate to her sense of isolation in the hospital. Eva received her transplant at age 23.  She died two years later.  I wish the movie had a different ending. I wish she was still alive.

I am home after spending 10 days in the hospital.  I'm finishing my IV  antibiotics at home. I'm grateful to be home yet recognize the strain that it puts on me and my family.  I have round the clock antibiotics so I am so tired,  I do not feel fully present. The medicine makes me nauseous. My sleep schedule is off. I feel off balance. I am tired of struggling to maintain my health. It's a fight that is never over. I feel weary.

At this moment I am aware of an 8 year old CFer who is being admitted tonight to the hospital, a 16 year old CFer who is scheduled for surgery next week, a 25 year old CFer who has been waiting over 6 months for new lungs and a 38 year old CF transplant patient that died last week from rejection.  They struggle.  I struggle.  The struggle continues.

Homesick.....

As I am longing for home tonight this song brings me comfort:

There's more that rises in the morning
Than the sun
And more that shines in the night
Than just the moon
It's more than just this fire here
That keeps me warm
In a shelter that is larger
Than this room

There's more that dances on the prairies
Than the wind
More that pulses in the ocean
Than the tide
There's a love that is fiercer
Than the love between friends
More gentle than a mother's
When her baby's at her side

And there's a loyalty that's deeper
Than mere sentiments
And a music higher than the songs
That I can sing
The stuff of Earth competes
For the allegiance
I owe only to the giver
Of all good things

CHORUS:
So if I stand let me stand on the promise
That you will pull me through
And if I can't, let me fall on the grace
That first brought me to You
And if I sing let me sing for the joy
That has born in me these songs
And if I weep let it be as a man
Who is longing for his home

Step By Step by Rich Mullins

I'm hoping this is my last night in ICU. Finding comfort in this song-

Sometimes the night was beautiful
Sometimes the sky was so far away
Sometimes it seemed to steep so close
You could touch it but your heart would break
Sometimes the morning came too soon
Sometimes the day could be so hot
There was so worth much left to do
But so much you'd already done

Oh God, You are my God
And I will ever praise you
Oh God, You are my God
And I will ever praise you
And I will seek You in the morning
And I will learn to walk in Your ways
And step by step You'll lead me
And I will follow You all of my days

Sometimes I think of Abraham
How one star he saw had been lit for me
He was a stranger in this land
And I am that no less than he
And on this road to righteousness
Sometimes the climb can be so steep
I may falter in my steps
But never beyond Your reach