Armed with a plate of “thank you” brownies and the prayers of many friends we walked onto a Children’s Hospital campus for Rhema’s EEG on Tuesday.
Compared to the risky life-saving surgeries involving major organs performed every day at Children’s, an EEG is a uncomplicated, relatively pain-free procedure. Not a big deal in the grand scheme of things.
(And I am grateful that all Rhema needs is an EEG now and then.)
Still, I cannot begin to express how much it meant to know that people would care about a little girl and her little EEG.
How did it go?
My description here will surely fall short, but I want to try and share it. I learned to pray 30 some years ago to the God of gods, yet I am still absolutely amazed by the power of prayer, how He hears, how He moves.
So. It was HORRIBLE.
The minute we entered the room my child L.O.S.T. it. Screaming, clawing, fighting – it was primal. It took four people – after several failed attempts – just to get her on the bed. I was sure we’d never get through it, and I was sure there were not enough brownies in the world to make up for it. Somehow with all hands on deck we managed to wrap her body in sheets, and then Velcro her into the papoose so that only her head and feet were sticking out. Even wrapped in the papoose Brandon and I had to hold her down with the full weight of our bodies.
All the while she screamed and rocked her head back and forth. The problem with this is you need to hold your head still while it gets measured and marked and then the 36 leads applied (and I thought it was only 25!). Further complicating things is Rhema’s hair. Have you seen it? It’s the thickest, curliest stuff around. Getting to her scalp is like digging for a ring in beach sand.
We tried calming her with music… we tried a DVD… we tried sips of juice. All to no avail. So Brandon had to force her head still, and then she bit him really good and the technologist wanted to call a nurse to attend to him.
About an hour into it we hadn’t made much progress. She was screaming and writhing and sweating so much that the colored markings (the measurements) that the technologist made on her head faded away before the electrodes could be placed. My poor girl.
And B and I were both trying to contain our emotions and he started questioning everything like what is the purpose of this, really? And inside I was getting mad at him for questioning anything. And I knew people had/were praying for us but we were not doing well at all. And Hope was sitting against a wall, refusing to look, trying to block it all out. And then B was questioning why did we bring Hope in here…?
And then God showed up.
That’s probably not theologically correct. God is always there. But it’s the only way I can say it. There was a shift. We literally felt it.
I kinda had a vision for my prayer for sweet Rhema. That God’s Spirit, His Spirit of Peace, would rush through her body like a wall of wind…reaching her right down to the cellular level….!!!…. and she would be overcome by calm, stillness, His Peace.
~E-mail from Lori
Prayers needed for our sweet, incredible-hulk-of-a-girl and her superhero family.
~FB post by Judith yesterday (with responses of “Praying!” from people I’ve never met)
I am praying… that you will see God in every face, in every hand, in every moment, doing what is best for you and for your sweet Rhema.
Praying for you right now and throughout the day. Go Rhema….you can do this girl. May God’s hands cover this appointment with His awesome power.
I just prayed that God will comfort Rhema through this whole process – that he will give her peace and help her to understand that he is holding her and caring for her. I just prayed that God will give you and and Brandon and the hospital staff guidance and patience as the leads are being placed. I will continue to pray for you all today.
The first time my son (on the autism spectrum) went to the dentist, he was so frightened by the experience that we couldn’t get another dentist to take him for four years. My daughter’s dentist met him at a time when I was desperately researching special needs pediatric dentists, and pleaded with us to let her try. He went in and sat for an entire office visit – x-rays and a full cleaning, with the aid of a small amount of understanding and show and tell from the dentist. When it was his time, it was his time. May this be Rhema’s time.
She stopped fighting. She stopped crying. She stopped screaming. She merely whimpered here and there. She let me stroke her feet. A peace settled over her, and she gave into it. And then it seemed like the time passed quickly, and we were done.
She kept every lead on her head for 24 hours without incident.
In the car in the parking lot, we prayed again. We were physically and emotionally exhausted. Just sad. So sad for our little girl, that she has to go through this. It takes a toll on the heart.
But we are also buoyed in our faith. And so blessed, encouraged, covered, carried, grateful for friends who lift us up.