Monday, March 21, 2011

Outside the boat

Two weeks ago Danica had the first MRI of her brain since her second Chiari decompression and cervical-occipital fusion in October. This is one of the images from that scan. This picture is one tangible thing we can go to over and over and know the pain and loss of the last months have made a difference. It's been two years since we stepped out on the water, and we began looking for healing for our girl. We have had moments of sinking, swimming and walking on water. We have been like Peter, excited to step outside the boat and head towards whatever God asked us to do, and we have also had our faith sucked away by boisterous winds and become full of doubt.

Since Danica was released from her brace we have been on a manic rollercoaster. Keeping Danica safe with her new freedom is an all consuming job. We are constantly trying to balance the reality of the months of healing still ahead of us with the pure joy of how far we have come. We have been noticing symptoms, particularly with her right leg and the foot when she walks. She seems to have very little rotation in that ankle and her entire leg turns inward. She still exhibits spasticity and goes between extreme tippy toe walking and straight legged, flat footed Frankenstein walking. I talked to the neurosurgeon on Monday, and he reminded me the damage done to Danica's cerebellum from her years of herniation will not just magically heal. The damaged part of the brain was coagulated but just because we can't see it anymore does not mean it's just suddenly okay. He recommended therapy. I was finally able to set up our first appointment on Monday, April 4th.

. . . I began this post much earlier in the week. Tomorrow will now mark three weeks since Danica's MRI. I have had many of you write and ask why I'm not blogging. It's been really hard over here. I am not well, and the constant job of caring for Danica has left me with even less time or energy to maintain relationships or write. I am so tired of telling the truth about what is happening to us. We thought it would feel different to come this far. We thought removing the brace would be a mountaintop experience and then it would somehow begin to be "downhill" for awhile. We just need a break. Instead, knowing we have to move and not knowing where has worn Dan and I to the thinnest I think we have ever been. Delaney hears bits and pieces of our conversations. She breaks down crying without warning. We never wanted her to feel so insecure, but it's inevitable. Danica has been having screaming fits again. This more than anything upsets Delaney. All the notes of celebration about making it to this milestone have gone very flat.

Last Friday night the girls and I had a wonderful opportunity to attend the spaghetti dinner sponsored by the medical technology students from various Stark County schools to help send our family to Disney. I was overwhelmed. I think maybe I don't remember how to be with people anymore. I feel completely inadequate to express how much their love and continued support means. I don't know how to talk about anything else except this. I have become this. Dan and I's marriage is this. Delaney's life is this. When we got home I was hurting so badly physically and just laid here in my bed while the girls made a tea party on the floor with their new blankets they had received as gifts from the students. I was sobbing. Later when I tucked Delaney in we talked about how we were feeling. I explained to her I always want her to be able to express when she is happy or truly sad and as her mom I need to be able to do this too, even with my children around.

I grew up differently. There was an expectation to act as happy as you could all the time. I remember very few if any talks with my parents about how mad or sad or afraid I was. I think this came from the idea that somehow if we said these things out loud to one another in any form other than a prayer it meant we weren't trusting God. Sometimes even when ALL past evidence points to the faithful hand of a loving God the circumstances and the fatigue and the pain and the fear still wash over us like a huge wave and take our breath away. It's okay to have a heart cry that is not "theologically" sound. The truth is the solid rock we will land on. The continued storms will take us there. Jesus will always reach out his hand to catch us. Meanwhile we will cling to one another and learn more about being outside the boat.

"We have this hope as an anchor for the soul, firm and secure." Hebrews 6:19


  1. I really enjoy your openness and your realism. I too see how Chiari can take the helm of the family. If we keep fighting and never give up we have won.
    Best of Blessings to your family.

  2. Oh, friend. I ache for you. You know I get this... this lie that somehow showing emotion other than happy is lack of trust. But when I look through the Word... Psalms and Lamentations and beyond, I see people who are crying your same heart struggle.

    Your cry always brings you back to truth, and THAT is theologically sound. I love you and your heart. Praying always.