Deja vu

Well, last night was another rough one. We have resigned ourselves to putting another bed in her room for awhile. I just cannot sleep another night on her floor.

I feel like a broken record or deja vu.

We are hanging our hopes that getting the stent removed next Wednesday will help with some of these pain issues. Her bladder is very active at night for some reason. There was over 300 ml in the catheter bag this morning. She cries that her back hurts so we try different positions but ultimately I’m wondering if it is her kidneys.

I was supposed to be at the Hillsong, Jesus Culture, Kari Jobe concert tonight. Honestly, as I changed a leaking ostomy bag and tried to clean out the wound that got the overflow from that I was really trying to hold back the tears and resentment building. This is hard. Harder than I thought it’d be.

Please pray for us. And while you’re at it, pray for our friend Beau. His family has been so helpful and kind to us and he is RJ’s very best friend. He was admitted to Riley yesterday with pneumonia. He battles cystic fibrosis like a champ and we pray for strength for he and his family.

I went to a Toby Mac concert with Emma for her birthday and this song resonated with me as Toby explained that he wrote it as her cared for his aging father. Hope it can bring you some encouragement tonight.

“Love Feels Like”
Toby Mac
(feat. DC Talk)

I am tired, I am drained
But the fight in me remains
I am weary, I am worn
Like I’ve never been before

This is harder than I thought
Harder than I thought it’d be
Harder than I thought
Takin’ every part of me
Harder than I thought
So much harder than I thought it’d be
But empty’s never felt so full

This is what love (this is what love)
This is what love
Feels like
This is what love (this is what love)
This is what love
Feels like
Poured out, used up, still givin’,
stretching me out to the end of my limits
This is what love (this is what love)
This is what real love
Feels like
This is what love feels like poured out,
used up still willin’ to fight for it
This is what love feels like
Yeah, this is what it feels like

Like floating confetti
The beautiful gets messy
When the fall out finds the floor
But in the depths of the trenches
Is the richest of riches
Love is calling us to more

This is what love (this is what love)
This is what love
Feels like
This is what love (this is what love)
This is what love
Feels like
Poured out, used up, still givin’,
stretching me out to the end of my limits
This is what love (this is what love)
This is what real love
Feels like
This is what love feels like poured out,
used up still willin’ to fight for it
This is what love feels like
Yeah, this is what it feels like

And now these three remain
Faith, hope and love
But the greatest of these is love

It’s worth everything you put in
Everything you put in…
Love
This is what it feels like

Poured out, used up, still givin’,
stretching me out to the end of my limits

This is what love (this is what love)
Feels like
This is what love (this is what love)
This is what love
Feels like
This is what love (this is what love)
Feels like
This is what love (this is what love)
This is what love
Feels like

This is what love (this is what love)
Feels like

Poured out, used up, still givin’,
Poured out, used up, still givin’,
Poured out, used up, still givin’,
stretching me out to the end of my limits

Matthew 16:24-27 Then Jesus told his disciples, “If anyone would come after me, let him deny himself and take up his cross and follow me. For whoever would save his life will lose it, but whoever loses his life for my sake will find it. For what will it profit a man if he gains the whole world and forfeits his soul? Or what shall a man give in return for his soul? For the Son of Man is going to come with his angels in the glory of his Father, and then he will repay each person according to what he has done.