Wednesday, May 5, 2010

Stepping stones to Iowa

Last night I turned off my computer and read Dr. Ben Carson's book, "Take the Risk." First of all, if you don't know about this man I highly recommend you find the movie about his life and all the amazing work he has done titled, "Gifted Hands." He is truly an extraordinary man and surgeon by anyone's standards. I'm sure he has hundreds of new cases on his desk each month and still Danica's was on top of his pile today. Through my sister-in-law's aunt Jo who works at John Hopkins Danica's case was personlly given to Dr. Carson's PA, Heather, and another stone was in place to move our Danica to the right treatment.

As I was reading his book last night I just wanted him to be THE one. His faith in God is inspiring and drives everything he does. I kept thinking "THIS IS THE GUY!!!" The book I read glosses over complicated brain surgery cases he has participated in and also his life story and mostly focuses on risk and how we live with it every day and how we can use our brains to calculate risk analysis along with our faith to make good decisions. This was the perfect message for me as a mom who is seemingly drowning in a sea of huge decisions for my daughter. These decisions are full of risk and the outcome is given to me from doctors in percentages but understood by me through the lens of a faith that is "the substance of things hoped for, the evidence of things not seen." (Hebrews 11:1)

Today we heard from Dr. Carson. He said there is one surgeon in the United States who has dedicated his career to this congenital malformation of the cranial junction and how it relates to hindbrain malformation (Chiari). His name is Dr. Arnold Menezes at the Univeristy of Iowa Hospital. My heart sank. Seriously, IOWA??? Trying to pull up a map of the US in my head I knew it was next to Minnesota. It was not somewhere I had ever dreamed of going and certainly not somewhere I would think to find a neurosurgeon for my Danica. There were some other details about his opinion about fusion in children as young as Danica in general and also his opinion about doing two major surgeries combined like was proposed by Dr. Crone in Cincinnati. His office is forwarding all Danica's scans and records to Dr. Menezes as a referral and we should hear from him early next week.

When I got off the phone I googled and searched and cried. I just want to quit waiting and get the fix, you know? Whatever that means I am so tired of these steps involving so many emails and phone calls and trips. I'm exhausted from so many sleepless nights and prayers that seem to be bouncing back. I'm frantic from the endless collection calls that wear at the very fabric of who I believe I am as responsible hard working person. In a fast forward world I want to be sitting on the beach next year watching Danica run around pain free and saying, "Wow, thank you, God! Four years and we are FINALLY out of the valley. EXHALE."

I stumbled upon this video tonight and everything calmed down in my heart and my mind. It's 17 minutes long and much more detailed than most of you will be interested in, but it is the surgeon, Dr. Menezes, speaking. He has clearly seen hundreds of cases in varying degrees like Danica's, and his methods are much more advanced than what was discussed with us previously.

To so many of you who have ministered to us through your fervant prayer, kind notes and emails and tangible gifts, THANK YOU. I can't begin to communicate how each one has come at exactly the right time to keep us focused on truth and dispel our spirit of fear and replace it with power and love and a sound mind. Each gesture is truly God's hands to us as we navigate these stepping stones in Danica's journey.

I would specifically ask prayer for our Delaney tonight. She had a little break down on Saturday and even asked why we ever had Danica. In many ways our life has been consumed by Danica and her needs beginning in early 2007 with my very high risk pregnancy. Delaney has made many sacrifices of her own. Please pray she will have a gentle spirit towards her baby sister who she truly does love very much. Please pray she will have an understanding greater than her seven years to help her make this journey without resentment. Pray Dan and I will find special ways to show our love and appreciation to her as we move forward.

Hoping to have a post with a plan early next week some time! Our hope remains!


  1. Hurting, crying, praying, hoping, and believing with you for wisdom, grace, and strength for this journey God has given your family to walk! Love as always!

  2. Hello..You don't know me, but we too have recently shared many of your emotions as parents. This Feb. our son, 9, was diganosed with Craniopharyngioma, a large cystic tumor in the middle of his brain. We were too referred to Dr. Menezes..If it is any consolation, please do not doubt your travels to him in Iowa..He is the best, most experienced, world re-knowned Dr. in the country for the care of children in with these needs. You are lucky to even get in to him, as you will learn find. He is very good, and without his skill..we may not have our son today. He performed a miracle for us, through the love and power of God.

    Bigger than the task ahead of us, is the POWER behind us......
    God has a plan, and this is a great one...he holds your child...believe this is how it should be..

    you may email me anytime at: