If you haven’t already heard or read somewhere I’m happy to share with you that we received great news from Izzy’s scans and most other tests this month. She is still No Evidence of Disease and while that doesn’t mean the disease is gone it means they are still not seeing any evidence of it which is the best news we can get for now and I’ll take it. As you can imagine, I slept little that week and worried much. I lay in bed each night talking to the butterflies in my stomach about the dreaded drive to Cincinnati I would have the next morning. And the dreaded drive home. The stillness in the car as I drove and the time that seemed to drag on forever as I waited for the phone calls.
Next week it will be two years to the day that I received the phone call that would change my life forever. As if the blow of it alone were not enough, it would set into effect a series of events shaking our world something fierce. December 23rd, 2011. A day forever etched in my mind. We would drive home preparing for family to arrive and my mind would wander off to my work at the church, something it seldom wandered very far from. I was told I would not get the results until the following week so when the phone rang and I saw the caller ID I knew something was wrong. I never could have dreamed just how wrong it was.
That was two years ago. Last year carried similar shock and trauma that came from seemingly no where. It was right about this time that we were planning for a surprise trip to Disney World during just a small break we had in treatments. We had just told the kids when a few hours later Izzy developed an infection in her central line throwing her into septic shock. One minute I was packing princess dresses, the next waiting silently in ICU remembering once again that her life was not in my hands. I remember being so thankful for the Christmas Story because of the opportunity to talk to Izzy about baby Jesus. It was another opportunity to discuss with her what heaven was like and she became excited to go to heaven someday and see him. In her longing for heaven I found comfort.
Here we are now. Izzy has overcome Neuroblastoma twice and together we have come through two Christmases that have been overshadowed by it’s darkness. She goes to school all day now just like all the other kids and we are only going to Cincinnati once every few weeks. She is living like a child again instead of an oncology patient and that has been a beautiful transition to watch. This Christmas is a Christmas of redemption for our family but it is something that I have to make a conscious effort to remind myself of.
Izzy had an appointment in Cincinnati last Monday that was very early in the morning. Around lunch time our team decided they wanted her to receive a dose of something called IVIG to boost her immunity levels. It takes over four hours to run and while it could be done that day, they would not have an open infusion room for three hours. I started joking around with our doctors about how crazy they were if they thought I was just going to sit there for three hours when I could have the same thing done another day. One of them, joking back, said something that has been echoing in my mind ever since. While he meant nothing by it, it struck me with a sharp pain and it has taken me days to reconcile it. Being very sarcastic he said, “You have been given the gift of time to spend with your daughter. Why not just sit down and enjoy it?” Ouch. I laughed but felt the pain begin to take over all of me.
Often times when we find ourselves at a place of brokenness everything hits us through the filter of that brokenness. Such was the case that day. He meant nothing by it but I was so angered by the frivolousness of his words. I was not angry at him, I was angry at myself. At my life. I knew that God had taken his words and was speaking to me through them and I was furious. But it wasn’t until yesterday that I realized why.
I realized last night that time doesn’t feel like a gift to me. It feels like something I have to endure. Wondering. Waiting. It’s as if the second hand on the clock is mocking me as it moves ever so slowly. After I received the final word on Izzy’s tests the first thing I thought was not, “Praise God! There is no evidence of cancer.” That was the second thought. The first thing I thought was actually, “I can breathe again…for three months until I have to go through this agony again.” There is guilt in that because I should be thankful. I should be more thankful for the life of my child than anyone has ever been in the history of the world. But that is not the primary emotion I feel. Even though I have received multiple words from the Lord (given directly to me and through others) telling me that Izzy will be okay that is not enough. I continue to long for more confirmation. So when I see her dancing through the house singing “It’s the most wonderful time of the year” over and over again I still question Him. For how long Lord? How long until it comes crashing down again? Or is this really it? Can I really breathe forever? But such is life. We do not know the things we do not know and we will not know them until we do. Life is that thing that happens while we wait.
I am reading a book that was given to me called Gospel Medicine by Barbara Brown Taylor. She says the following of Sarah and the journey she walked for years waiting for the child that was promised to her:
“It is a hard thing, to believe in a promise with no power to make it come true….To take nothing for granted. Or to take everything as granted, though not yet grasped….To live like that is to discover that the blessing is not future but now. The promise may not be fully in hand. It may still be on the way, but to live reverently, deliberately, and fully awake – that is what it means to live in the promise, where the wait itself is as rich as the end.”
The truth is I have been given the gift of time with my daughter and I long to spend it living fully awake. I long to live IN the promise as Brown describes, not just waiting until the day I die and can look back on my life and realize it came to fruition.
The other night Izzy and I were wrapping presents and out of nowhere she looked at me and said, “Glory to God.” I looked at her startled. “Do you even know what that means?” I asked, smiling. She looked at me like I was an idiot and said simply, “Well, it means to give God glory.”
“Yes it does,” I said. “Yes it does.” Oh, that we could live from the simple place that our children do. An uncomplicated place of resilience and beauty. A place that is reverent, deliberate and fully awake. A place that can give God glory where glory is due. Glory free from fear and free from shame.
Blessings to you this Christmas Season and as always, LIFE for Izzy.