Team Danica: Your hands

Sunday, August 15, 2010

Your hands

"For I am the LORD, your God, who takes hold of your right hand and says to you, Do not fear; I will help you." Isaiah 41:13

Danica crawled into my lap today. I felt her soft and warm little body meld into my mommy arms like she has hundreds of times. I put my face into her hair and smelled the sweetness of baby soap and her own special scent. My first thought was gratitude for the moment and the awareness of how sweet a gift it was. My second thought was about losing this for weeks and months. How do you snuggle in such a crazy cast?

I have been listening to the song "Your Hands" sung by J.J. Heller today. I am in a great deal of personal physical pain. I am feeling overwhelmed by my work and the intense desire to just spend the next month loving my daughters and husband well and preparing for Danica's surgery.

I need to take my Father's outstretched hand. I need a renewed understanding of how strong His arms are. The very hands that hold the universe are holding my Danica when I cannot. They are holding Dan and Delaney. They are holding me. He will never let us go.

I have unanswered prayers
I have trouble I wish wasn't there
And I have asked a thousand ways
That You would take my pain away
That You would take my pain away

I am trying to understand
How to walk this weary land
Make straight the paths that crooked lie
Oh Lord, before these feet of mine
Oh Lord, before these feet of mine

When my world is shaking
Heaven stands
When my heart is breaking
I never leave Your hands

When You walked upon the Earth
You healed the broken, lost, and hurt
I know You hate to see me cry
One day You will set all things right
Yea, one day You will set all things right

When my world is shaking
Heaven stands
When my heart is breaking
I never leave Your hands

Your hands
Your hands that shape the world
Are holding me, they hold me still
Your hands that shape the world
Are holding me, they hold me still

When my world is shaking
Heaven stands
When my heart is breaking
I never leave You when...

When my world is shaking
Heaven stands
When my heart is breaking
I never leave...
I never leave Your hands

3 comments:

Stephanie JAugust 15, 2010 at 9:09 PM
I really like that song. I encompasses the true pain that many of us are in. I have been and will continue praying for your entire family and the doctors who will be helping Danica. God is holding you tight during this trying time. Sending hugs all the way from Texas.
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The CrabtreesAugust 15, 2010 at 9:23 PM
Praying for you. Praying for our Lord to go before you, be behind you and surround you and your family with His love and protection.

Carol C
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Rachel LundyAugust 17, 2010 at 4:17 PM
Thank you for so openly sharing your story, your pain, and your hope. Your blog readers are blessed, and God is glorified.
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About Danica and Monica's Chiari and related conditions

Our little Danica has a Chiari malformation in her brain. What this means in simple terms is she has a gap where most people's skulls are closed so some of her brain is sticking out into her spinal column. She had brain surgery in November, 2009, which brought her some relief, but her brain became herniated again, and we were told she needed another more involved brain decompression. In addition to her Chiari, Danica was diagnosed with atlas assimilation, a congenital formation of her skull fused to her neck vertebrae. She needed spinal fusion to help make her stable. Both surgeries were at Cincinnati Children's Hospital on October 5th, 2010. She braved 5 months in a Minerva brace and wheelchair and another 8 months in an Aspen collar. On October 25th, 2011 her scan showed complete fusion. Danica's brain and spinal cord MRI on February 22nd, 2012 showed a true miracle. Except for her obvious fusion hardware and cerebellar sling her scan looked completely normal. Praise! We continue to deal with a recurring infection and travel for her follow up scans to check on her bones as she grows. She is doing well with very little pain or symptoms.

For over a decade I have suffered from wide spread pain and other neurological symptoms. I was diagnosed with fibromyalgia in 2001. Through Danica's journey I finally put the pieces together. Over the last five months of 2011 my health declined to include constant suboccipital pain and disability. I saw Dr. Fraser Henderson in Maryland on October 19th and scans showed what we really already knew. I too had craniocervical instability, atlantoaxial instability, Chiari malformation, cervicomedullary syndrome and Ehlers Danlos Syndrome. I have had nine surgeries since August 2010. I suffer from daily pain and a progressive "invisible" illness.

This blog is our story. We live in hope.

Team Danica

Sunday, August 15, 2010

Your hands

3 comments:

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About Danica and Monica's Chiari and related conditions

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