I have a teal blue leather journal with a feather imprinted on the front. I've taken it to several years of appointments and hospitalizations. It's full of notes I've scribbled when doctors explain scans to me or make rounds and update on blood work or go over next steps or discharge instructions. It also has heart prayers scrawled throughout.
After my upright MRI in flexion and extension today I cabbed over to the hospital to wait and see my neurosurgeon. I was in crazy pain from the movement of my neck and head. I had to repeat the hard ones because my body twitches when put in such a compromised position and any movement ruins the images. It was brutal. Waiting is a part of the neurosurgery world I truly never mind. Both Danica and I have been the patient who needed a long consult that made others wait. I always think of whoever is back in the rooms and their stories, and I show grace. I settled in to my chair and flipped through my little book. It is a beautiful reminder of all God has brought me through. I found this prayer I wrote several months ago while waiting in the exam room for the Aultman doctor to decide if he would help with my plasmapheresis..
"God, I trust You. You are bigger than $918. (This is what we needed to pay up front.) You are bigger than my infections. You know this doctor, and his willingness to believe and help. I so desperately want more life. Please Father, give this to me."
He answered in every possible way.
Today I was "singing" an old hymn I grew up with over and over in my head like a mantra. My brain works like this. I repeat things mentally many times without trying.
I wrote out this prayer.
"God, You have brought me to this waiting room in Lanham, Maryland today to serve a purpose in my life and the lives of those who touch mine. You know my pain. You know my heart's desire to be well and have the most whole life possible. Search my heart. Help my desires to be in line with Your ultimate plan for my life and the lives of those You've entrusted to me. Give me a pure spirit to seek only Your glory which is my good. Help me not to shrink back when You make a path clear. May I commit my way to You and know you will bring it to pass. All of it! The relationships. The finances. The courage. The outcome. All of it! Never let me succeed unless I surrender it all to You."
It was finally my turn to go back to a room and wait some more. Dr. H came in and went over my scans and my symptoms. He examined me and stuck me with a bunch of safety pins. We knew I had some instability at C4-5 and lower from my last images in the spring. After my fall over Labor Day and the rapid increase of pain and symptoms we assumed it was going to be my C4-5 needing attention. I've had a gut feeling it was actually further up. I am already fused from my occiput (skull base) to C2. I've had a good deal of pain at the base of my head leading into my neck that I didn't think C4-5 could explain. I was right. My C3-4 is really the worst level. This is the fusion surgery I will have Wednesday morning. It's a little riskier. It will still be anterior. I'm hoping for the same recovery time and hospitalization. I also know I have to change my life to protect the levels slipping below. I can't lift grocery bags. I can't look for Twixie's stash of stolen trinkets by twisting my neck and looking under the couch. I can't carry a Rubbermaid of toys from the basement. Because I have been more well I have begun to do things I couldn't before because I was just too sick and weak. I've compromised my spine. I have EDS. I have instability like a waterfall down my neck, back and lumbar spine. I need to find a way to live with the least amount of impact on this progressive situation.
Tomorrow I will find out if my 7:30 am surgery time for Wednesday stands or if another patient needs to go first. I am completely fine with whatever is decided. I will have to re-sign paperwork tomorrow since the details of the surgery are changed.
On my way out I ran into a woman at the elevator I met at the hospital when I was here for twelve days in the spring. She is from Brazil. Her daughter is having seizures again and needs more fusion. She is only able to be upright for several minutes without passing out or seizing, so the mother had parked right outside the door and come up to hold the elevator so they could whisk her daughter in a wheelchair quickly to lay down in the car before she would have another episode. This young lady will be having surgery on Wednesday as well. They both made such an impression on me when I met them before. Their faith is so strong. Their fight is so far from home and oh so long. Suddenly, I was braver. I knew every bit of the timing of my day was planned so we could see one another again and be encouraged.
Thank you for the overwhelming texts and messages and notes sending your love and prayers. Please do continue to lift me up as I'm here alone. Please pray for my Dan and girls and pup back home. Will you say a special prayer for my neurosurgeon who has several surgeries tomorrow and again on Wednesday? This man gives his hands and his heart and his life over to a very complicated group of patients. He risks to help us. He makes decisions that affect us forever. He bears the weight of this without crumbling or quitting. He does important work.
I talked to my family, and they are well. Dan was making a cake and helping Danica with her homework while Delaney studied. I always feel peaceful knowing even though I'm lonely here they are together and in the comfort of their routine.
I'm hopeful.
I've committed this to Him, and I trust Him.
I surrender all.
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