Tuesday, April 27, 2010
Blessings and Curses
Yesterday in Cincinnati Dr. Kerry Crone, the neurosurgeon at Cincinnati Children's Hospital, flashed this image up on the large screen in his office, and I was stunned. We went on our trip knowing we might find out even more bad news because Dr. Crone suspected Danica might have a soft tissue condition of some kind based on things he read in her post-op report. It was the 3D CT that painted this startling picture of our Danica's skull base and cervical junction. Something is horribly wrong.
I cried most of the long drive home yesterday as Danica screamed and thrashed in her seat from the negative effects of the nebutol. I hadn't eaten all day and was just shocked. Dan was focusing on driving in the pouring rain and traffic. We didn't really talk. We just had to process this newest thing. When I got home I had to work. I know it sounds crazy, but I am forever grateful for my telecommuting job that enables me to be here most of the time and flexible enough to provide and also care for all these medical appoinments, etc. Somewhere deep inside work has always been a good compass for me. It's something that keeps me going through the motions and doing the next thing. So, I struggled with Danica and finally got that exhausted baby aleep. Dan was already sleeping, curled up with his clothes still on, and I went downstairs and started to work.
I had written these words on a notebook during our meeting with Dr. Crone, and they kept staring at me while I ran lists:
Congenital Assimilation of C1 to the occiput
Open the dura, coagulate the tonsil, put in a patch
Fusion of the occiput to the C3
Rods and screws
Best alignment possible
8+ hour surgery, 14+ days hospitalization, halo cast 3-4 months
I went on to write all the risks of each procedure which I won't share here and now. In a moment what was a consult about a scary second brain surgery became much more.
Tomorrow my dad will drive me to Cleveland to get the sum of Danica's paperwork and every scan she has had and we will send to Dr. Carson at John Hopkins. Today I sent an email to his PA letting her know we are now needing opinion on not just the brain surgery but also the spinal fusion based on the new CT. Dr. Crone kept using the word, "unstable" to describe Danica's current condition. He said a simple fall down the stairs or a car accident could leave her paralyzed. We need to move quickly but carefully these next weeks. We need wisdom to make the absolute best decision for our Danica.
Last night I screamed and cried and pitched a fit. I said over and over how I just can't do this. After I couldn't see straight I took an ativan and an ambien and fell asleep. Today the sunshine and the perspective from the rest and my Father drew me back to the truth. God makes no mistakes. He is good even when life is bad.
If you know me well I have probably gifted you the book "Cold Tangerines" by Shauna Neiquist or have quoted some of it to you in an email or a letter. The way Shauna writes is the way I think and journal and pray and try to live most of the time. In one of my favorite chapters she writes this,
"When you realize that the story of your life could be told a thousand different ways, that you could tell it over and over as a tragedy, but you choose to call it epic, that’s when you start to learn what celebration is. When you see in front of you is so far outside of what you dreamed, but you have the belief, the boldness, the courage to call it beautiful instead of calling it wrong, that’s celebration. When you can invest yourself deeply and unremittingly in the life that surrounds you instead of declaring yourself out of the game once and for all, because what’s happened to you is too bad, too deep, too ugly for anyone to expect you to move on from, that’s that good, rich place. That’s the place where the things that looked for all intents and purposes like curses start to stand up and shimmer and dance, and you realize with a gasp that they may have been blessings all along. Or maybe not. Maybe they were curses, in fact, but the force of your belief and your hope and your desperate love for life as it is actually unfolding, has brought a blessing from a curse, like water from a stone, like life from a tomb, like the actual story of God over and over. I would never try to tell you that every bad thing is a really good thing, just waiting to be gazed at with pretty new eyes, just waiting to be shined up and- ta-da!........there is something just past the heartbreak, just past the curse, just past the despair, and that thing is beautiful. You don’t want it to be beautiful, at first. You want to stay in the pain and blackness because it feels familiar, and because you’re not done feeling victimized and smashed up. But one day you’ll wake up surprised and humbled staring at something you thought for sure was a curse and has revealed itself to be a blessing-a beautiful, delicate blessing."
This is the story of God played over and over in our lives--in Danica's life. He continues to give life and strength for today and shining little miracles that light our way through even the darkest valleys. After Danica was born a verse I clung to was from Job 42:5, "I have heard of you by hearing of the ear but now my eye sees you." He is giving us healing of the eyes yet again to see the blessings through the curses in this journey.
Thank you for continuing to pray. Thank you for caring for us so well. Your support is part of what strengthens us when we are too tired and weak.
(Check my facebook for adorable pictures of Danica from her first hotel stay. Priceless.)
Posted by Monica Kaye at 7:34 PM