Before I tell you the hard stuff, I want to start with a praise. Remember all that brain confusion and dizziness I had talked about a few posts back? Well it is gone! It turns out one of the drugs L was on was causing that! The nurses figured that out and pitched it. Hooray!
Something I have not talked about on the blog, probably because it is too hard to wrap my mind around, is that my daughter is permanently damaged. During her heart surgery one or more lymph vessels were severed, and they are pouring out chyme. She is attached to a vacuum that is attached to the hospital wall. They are trying things. So far they have tried waiting to see if it fixes itself, and they have tried the embolization, but they don’t actually know how to help her. If I wanted to take her on my own anywhere else for treatment, I couldn’t. She can only stay alive with this vacuum.
This is a hard concept for Jeremy and me, and we have worked to shield Liberty from it. But she is a smart girl, and she has started figuring it out.
Pray for her.
Even the embolization, if it had worked, would not have been an ideal solution. Now, the purposeful damage done that they hope will create scar tissue this week will also create life-long problems. We don’t know exactly what all those will be, but we know some of them.
She is in pain. The failed embolization and consequently ruined parts of her lymphatic system hurt drastically. She gets x-rayed every two hours, and moving into position for that hurts.
She is tired. Tired of hurting. Tired of loneliness (life after covid in a hospital is extremely isolating.) Tired of all the energy it takes to keep living. Tired of her lack of ability and lack of activity.
I know emotions go up and down. I know all of this is to be expected. I know these are all thoughts I have slowly processed through over the week. I know she needs to go through this herself, but knowing this does not make it any better.
We called our pastor and some friends today. I was hopeful those calls would help, but Liberty ended the last call early because it was too hard to talk with happy people who can move about on their own. She told me she wished she could pass out just to get some relief from living this life. In order to escape for the moment, she asked to watch TV, but a side-effect of the contrast dye she was given during the embolization is that her brain cannot handle stimulation, and TV is way too much stimulation. She can listen to lullabies and slow, soft music, so we tried that. But she had too much pain and nausea to relax.
All afternoon she’s been asking me for reassurance that she will get out of here some day. I’ve prayed with her, I’ve sang with her, I’ve praised God with her. Next I gave her a couple hours to just be quiet and think, and I prayed for her. God kept putting one thought in my mind. “If I never heal you, what will you do?” I knew I was supposed to ask her. So later this evening, I did.
“My Tweet, if God never heals you, what will you do?”
She weakly began singing to me with her head poised over the vomit bag, “Where You go, I’ll go. Where You stay, I’ll stay. I will follow You.”
My heart smiled.
Tonight she tried to settle in to sleep, but her chest tube hurts and her IV arm aches. Not to mention all the other things. But those two were bothering her the most as she snuggled into bed. She is all stocked up on pain meds, so that was not an option. We talked about how Daniel might have felt in the lions’ den and how Shadrach, Meshak, and Abednego might have felt going into the fiery furnace. Sometimes life doesn’t feel good, and you have to live it well, anyway. Live it valiantly.
She pleaded, “God, just the chest tube or the IV, but don’t ask me to live with both at once!”
“But He is asking, Liberty.” I had to tell her regretfully.
“Okay, God,” she gasped out. “Then You’ll have to help me with this, too.” I watched as her muscles relaxed, her body calmed, and she fell fully asleep within three minutes. That was two and a half hours ago, and she is still fully asleep! AND there are no x-rays scheduled through tonight!
Thank you, God!!!
Your girl...she is so reverent and obedient to our God. Praying for you still!