Saturday, August 7, 2010

I hope you dance

"Tell me, what is it you plan to do with your one wild and precious life?" — Mary Oliver (New and Selected Poems)

I took this photo tonight in our backyard. It amazes me. Our family was playing a game of soccer. It was a wonderful time. While watching and snapping pictures I kept praying, "God, please let this continue to be part of her life . . . our life." Danica lasted kicking and running about 10 minutes before she began crying and saying her head hurt.

We sent an email with specific questions to both the neurosurgeon and orthopedic surgeon we will meet with Tuesday. They both wrote us back immediately, and their answers were hard to process and difficult to get through. Some of Dr. Crawford's email read, "I preface my answers to your questions to remind you that this is extremely complicated surgery. There are existing neurological issues that may not reverse with the surgery and there is risk of further injury with any of these procedures. Neurological monitoring will be performed at all times being prepared to abort if indicated. . . . My goal is to achieve stability following decompression and is not designed to nor will it correct the spine. The comfort of the brain and spinal cord will be achieved by the decompression. The instrumentation in a child this age is creative at best because her anatomy is quite small and abnormal, not suitable for conventional devices. In addition there are post-surgical changes now with displacement and will be further affected by the anticipated decompression surgery necessary. . ." Dr. Crone wrote, " . . . Our hope is that the procedure alleviates the problem (brain herniation) and that she will improve following surgery. However children with these complexities may only be halted in their progression to neurological deterioration. . ."

When I was 30 weeks pregnant with Danica I had reached a critical point in her development and also the pain with my blocked kidney. They had given me a shot to mature her lungs and sent in the neonatal specialists to explain to Dan and I all the risks associated with Danica being born 10 weeks early. They were required to tell us EVERYTHING that may go wrong. I will never forget the scary words and the fear I felt. They "measured" her that day and told us she was approximately 3 pounds. I remember after they left telling Dan, "I know she's going to be okay." God gave me a sense as all that information flooded in about how bad it could be that we would make it through. I made it two more weeks. Danica was 5 pounds when she was born and didn't even need a ventilator.

Over and over again I have dreamed about what a "normal" life for Danica and our family might look like. We keep saying, "If we can just get through this . . ." Then the next thing comes. Danica has begun to self edit her activities based on our constant reminders she may get hurt. This week she told my mom when Delaney and her friend were headed out to jump on the trampoline, "It's too dangerous for me." One of our favorite ways to relax as a family is to pick a favorite playlist and dance together. Danica loves trying to copy Delaney's moves. When she gets too crazy and her neck and head start to hurt she lays down on the floor to rest. I think these emails from the surgeons truly for the first time impressed on me there is no final fix for our sweet girl. This is our new normal. There will always be appointments and scans and limitations. There may always be pain.

This is our life. Every single moment is wild and precious, and we will keep dancing no matter what.

(I met with a local mom of a little four year old girl, Brooke, at Starbucks this morning. Brooke has Chiari too and is having her first decompression on Tuesday. Will you please pray for this family as you lift us up on Tuesday during our Cincinnati trip? Thank you.)

1 comment:

  1. So precious and as always you have reminded me what a gift every moment and every day is for each of us! Will be praying for you in a special way on Tuesday, the trip, the tests, and all the information to process! I know God will give you wisdom to make a decision and have peace with it! Love to you all!