Sunday, March 9, 2014
Four years, a glimpse at the big picture and ending Team Danica
I’m looking at the flat, barren landscape of 71. This stretch of pavement between Columbus and Cincinnati is one I have grown to hate over the years. If you paint our journey with a broad stroke or view this piece of art from a distance you may only see the colors of hope and healing. They are vibrant and breathtaking. But for us, the ones who have watched this masterpiece morph, no matter what news comes at the end of these trips, the road is bump after bump of pain literally and figuratively. The dark shadows most think we should have moved on from are still looming at every mile post. We see the financial drain each mile we move closer. No matter how God has provided we still come to this thicket wondering when and where the ram will appear. Our new year deductibles chase us. Knowing the cost is thousands of dollars to even walk in the door is a weight we drag behind us like chains on our ankles. Because of my shunt revision surgery , Maryland trip out of network, more hotels nights, more driving, more of it all we gasp for air. There is no choice but to keep moving even though it feels like quicksand.
I canceled this important trip earlier this year, because I was simply not well enough, and I just didn’t have the strength to do this. Weeks before we come here I begin to have racing thoughts about the hotel, the hospital, the anesthesia, giving our girl up to strangers for hours while we wait, and the dark room where they show us the scans. I hate the smells and the glazed over look in almost everyone’s eyes as they wander from appointment to appointment or down from their child’s room to get a meal in the cafeteria. I have flashbacks of Danica in those days following her surgery when she thrashed insanely in pain, and I went days without sleeping trying to save her and orchestrate her care. In the end there is the obligatory gift shop trip to reward a little girl in some tangible way for her bravery in all this, and it seems like it is all a bad Lifetime movie. Only this is not two hours with a happy ending or at least some inspirational and didactic meaning to carry away. This is our life. My chest is tight. My head is aching. I know the exhaust of the cars and trucks on the road are adding to my increasing feelings of anxiety and manic mind and heart. The silence between Dan and I grows more caustic. He closes himself off. It has never been any different. I want to talk this all through for the thousandth time, and he just needs to drive and do what needs to be done. I begin to cry. Every single time tears begin to fall down my cheeks the closer we get.
I remember the first trip here. It was April 2010, almost exactly four years ago. (The picture above is Danica jumping on the bed in this very hotel. It makes me cringe not smile, because the day after this photo was taken we found out how jumping could have paralyzed her she was so unstable.) We knew Danica’s decompression in November of 2009 for her Chiari malformation had failed. Many of her symptoms had returned and even escalated in the few months since we let them cut open her head and neck and shave away bone from her vertebrae to make more room for her brain. Her little neck falling to the right again was the most glaring sign we did not succeed and perhaps had even made her worse. Suddenly we needed to be much more informed about the condition and what underlying genetic mutations might be causing it. We were scared. Although the first brain surgery was scary, we still believed it was something really hard God was asking us to do just for a time. We thought it was something broken in our girl we could fix. Our first trip to Cincinnati solidified this “C” word was here to stay.
Our “simple” Chiari story which seemed like a miracle for the first few months became our entire life. You began to read here and raise money and pray. We were overwhelmed as people from all over the United States and the world wanted to support us here at our little blogspot blog which became Team Danica. I had always been a writer, but I never needed an audience for what I scribbled and pecked away in private. I even tried to hide my writing. Suddenly, I had hundreds of people checking in for updates, and not just to see how we were or what the plan was but to truly share our hearts in all this. Somehow, in all the lament and torment of those early days, this place became where I could honestly share what this kind of journey looks and feels like. Dan joined occasionally to show his husband and daddy heart. It wasn’t always easy or cathartic to keep coming back here, and I took breaks for sure because of fear or sadness or just plain exhaustion, but whenever I would stop writing people would email or message or call and tell me they needed to keep reading and following. Team Danica became as much a blog about my health and journey as our sweet girls'. Still you came to read and pray and support us.
Four years we’ve been here.
The well of love has always been deeper than the well of pain and suffering.
The strength and grace of our God has always been ENOUGH.
The provision has always come.
Our Hope has remained even on the darkest days, because we believe.
We believe because He causes us to trust and loves us even when we don’t.
. . . We are here in the hotel now. Michael Card’s “Sleep Sound in Jesus” plays on my itunes while I type. Dan and Danica are drifting off. I can see the Children’s Hospital sign lit up in the dark from our window. My prayers try to cover the hundreds of beds full of children who sleep there tonight fighting some illness, healing from a surgery, waiting for a diagnosis and the parents who sit vigil with them. I pray for the doctors and nurses who sacrifice to join in these wars. I pray for those who do not have a voice like we have to ask for prayer or support or a meal or a hug.
I feel a calm peace about our tomorrow. It may be my Ativan (smile), but more likely it is the prayer with Danica before bed and heading back to the arms of Jesus in the simple words of these lullabies. I am reminded of a God moment from my Tuscon trip when He allowed me to see a big picture view of our life as it intersects so intricately with people we don’t even know.
On my last flight home from Atlanta to Akron/Canton God sat me next to a woman from Wichita, Kansas. I was tired and grumpy and very anxious about how my body was going to react to the pressure and weather changes. I had the best and healthiest week of my life since before Danica’s diagnosis. Besides missing my family I did not want to come home. I politely settled into my window seat and asked her where she was from and where she was going. She asked me the same questions. I mentioned my shunt surgery and a trip to heal. She asked me why I had a shunt, and I shared a quick headline blurb. I really wanted to finish writing in my journal and listen to some music on this last flight. She told me her nineteen year old son Jack was born with a spinal cord issue and at four months old they flew him to Cincinnati Children’s Hospital for surgery. Guess who Jack’s surgeons were almost twenty years ago? Yes, Dr. Kerry Crone, neurosurgeon and Dr. Alvin Crawford, orthopedic surgeon, banded together in a joint surgery that had never been done before. This was no coincidence. We gushed our stories to one another through tears. Then it came out and stopped us both in our tracks. It was the summer of 2010. Danica was scheduled for surgery and Dr. Crawford pulled out leaving us with a brain surgeon but no willing bone surgeon. Far away her son Jack was also scheduled for his last orthopedic surgery with Dr. Crawford to fix an issue with his foot. He was fifteen years old.
We now know Dr. Crawford was considering retiring that summer and so he was shying away from difficult cases he could not follow, especially a little girl with atlas assimilation and a failed decompression who no one else wanted to fuse until she was six or seven. Jack could have had one of Dr. Crawford’s up and coming surgeons, and it might have been fine, but it wouldn’t have been what their family needed or wanted after so much care from one man. I can still see myself praying on my knees by Danica’s door at our house on 35th St. I didn’t understand why God would bring us to this dark place if He wasn’t going to see us through it. If you go back in the archives and read my wrestling, the tension in Dan and I’s marriage, the palpable hysteria of not knowing where to go next you will understand in part my desperation. Suddenly, Dr. Crawford was back on board. He put himself completely into Danica’s case including designing the special hardware and having it made and taking her images and having a 3D model of her skull and cervical spine made to teach from. Jack got his surgery too. He is doing well four years later.
I can’t think of any other way God could have shown me how brilliantly He in charge and how little we need to know about it to trust Him. One of the most beautiful lessons I learned early on in all this was how most of what is happening to me and around me is much less about me than I ever could have imagined. Yes, He’s working in and through me but it’s for something so much bigger. Oh how I cheapen my life when I make my God small. I see in a mirror dimly what He will make clear someday. For some reason He chose to clean the mirror a little on my flight so I would SEE Him in even the last hours of my trip.
I believe God is prompting me to stop writing this blog after our trip if Danica’s scans and x-rays are positive. I want to do it thoughtfully and let each of you know where you can find us if you need or want to. I will plan to leave it out on the internet for a period of time simply because of the number of people who find us through search engines in their own Chiari, Ehlers Danlos, POTS, PANDAS journeys and long to make connection with us because of all we have walked through. Following my “mountaintop” trip to Arizona a few weeks ago, I do know my call to write has been solidified in a few other more demanding ways. Please pray about these opportunities. Also know I will be creating a new place to share less of my health and more of my heart and will eventually link from here and also contact those who are close.
I promise for a quick update on the brain part of our trip tomorrow. Danica’s MRI is scheduled for 7:30 am, and we will see her neurosurgeon, Dr. Crone, at 11:15 am. The orthopedics scans and visit are on Tuesday. We have every reason to hope for a perfectly good scan. Danica has almost no symptoms of Chiari or any neurological deficit at this time. Thank you for praying for the anesthesia to go smoothly and for all the details of the day. We treasure your lifting us up! Please pray for our Laney who is back home with my mom. She was very emotional about us going and called crying twice today. This is not like her, and it breaks my heart. It was a reminder how much each one of us carry around because of Danica's health and especially what Delaney has been asked to walk through since my pregnancy with her little sister. She is so brave and independent, but the first to say we should move to Arizona so she could have her mama back.
No matter what you are carrying tonight, I hope this wandering of words down our past four years and the glimpse He gave me of His sovereignty will encourage you to not crumble under the weight of what He asks you to bear. He is doing something bigger than you can see.
I know it for sure.
Posted by Monica Kaye at 10:59 PM