Grief and Gratitude

There are times in your life when you feel like you are in the middle of a b-version movie. The slow motion, over exaggeration of dramatic events plays out on the stage of your life. The audience is small. Even though it‘s your own story you wouldn’t watch if given a choice. Days spent at hospitals are like this. You sit for hours waiting for the moment when something big will be revealed to you. The story line is all set up. The past weeks and months have all lead to this. You’ve played it over in your head a hundred times. If you’re an optimist or believe in God and miracles more than half of those times you’ve imagined triumphant music beginning to play in the background, and the ram appears in the thicket. You are saved. The rest of the time the inevitable pessimist takes over. You’ve imagined the worst.

I have heard God asking me for some time to lay my “Isaac” down. In more ways than I ever thought possible I have had to surrender this gift from Him back to Him. Leading up to our Iowa trip I felt the knife was poised. I was ready to follow through with whatever He asked including both surgeries immediately. Resting in this faith most of the time I was still desperately hoping and praying for my ram to appear. Instead God has asked us to do something harder. Keep Danica strapped onto the altar, stand with the knife and wait some more.

Our meeting with Dr. Menezes was really very good. God had gone before us in an amazing way through Amy’s aunt Jo getting Dr. Carson involved and his referral and conversation with Dr. Menezes as well as Dr. Cohen’s phone follow up with him. He was expecting us not just as an appointment on his calendar but was thinking about her case ahead of time. Clearly this man’s experience and knowledge of complicated cases like Danica’s is unsurpassed. He was humble and loving and spent so much time with Danica and with Dan and I. He fell in love with our Danica. He went over each scan and clearly explained the three separate conditions--Chiari malformation, Atlas assimilation and the new diagnosis of Klippel-Feil Syndrome. He detailed how they are related, what he believed their origin to be and the plan of treatment in the short and long term. His final conclusion is that Danica's bone problems came first and her Chiari may not be congenital as much as caused by the Klippel-Feil and assimilation pushing her brain down into her spinal column as she grew. At some point after birth her skull has also "slipped off" to the right.

The first order of business was to head down to the ortho center and have Danica fitted immediately for a Philadelphia collar. Dr. Menezes believed she was so unstable he could not send her on the long trip home without this additional support. She does need fused. Her brain (Chiari) needs decompressed, but he explained that if we decompress her we make her so dangerously unstable we would absolutely have to fuse at the same time. He believes the more time we can buy before doing these risky surgeries the better for Danica. The failure rate at her age is very high. The collar is the part I was dreading most as part of her recovery from surgery. It is now her constant accessory. She must wear it from the time she gets up until bed, only taking it off to sleep. She has many physical restrictions including normal childhood things like jungle gyms and wagon rides, somersaults and jumping—anything that would cause her neck to move forward or backward in a sudden motion.

The new diagnosis of Klippel-Feil was the most overwhelming part for me. He said, “These are the things you must do immediately--get her heart and lungs scanned, get her kidney and ureters scanned, get her female organs scanned, have a hearing screening and get her back to the eye specialist.” This very rare disorder is something congenital that happens during weeks 3-5 in utero. Although we now see and understand the effect on her bones forming we do not know if it has caused malformation in other vital organs. This is something that very often happens in Klippel-Feil cases. This week I will begin making all these appointments. I cannot be more afraid than I have already been. This is just something else hard to move through.

Danica did wonderfully on the trip. She literally did not utter a cry in the car either way. I know there were angels surrounding us and carrying us. We could not have made the trip without my parents. I am weeping just thinking of the many times they have been there for us since my pregnancy with Danica. They have driven thousands of miles to be with us and help us. They have sacrificed so many times. Dr. Menezes was running late in surgery, and we waited two hours past our appointment time to see him. Danica’s nervousness was visible as we parked and entered a new hospital. She actually got queasy, began gagging and acted like she was going to throw up. Meme and Pops distracted her, filled her sippy, got her crackers, took her to the hospital library and helped us through such a long visit.

There is a strange whirlwind of gratitude and grief swirling in our hearts. I know I have missed many details and will try to fill them in as my body and heart recover a little. Thank you for your many prayers. The palpable support felt during this past weekend was something I have never experienced before in my life. God is the author of every moment of our screenplay. We know the final ending will be triumphal, because we are more than conquerors in Him, and He does everything He says He will do. In the meantime we will do the next thing.

“My flesh and my heart may fail, but God is the strength of my heart and my portion forever.” Psalm 73:26