Chiari

This is a post from my personal blog on September 20, 2009. Danica had been suffering for months and finally we had a name for the ugly monster causing her so much pain. They called it "Chiari."

Our little Danica had an MRI on Tuesday that revealed a Chiari malformation in her brain. What this means in simple terms is she has a gap where most people's skulls are closed and so some of her brain is sticking out into her spinal column. Some people have this condition without symptoms, but in Danica's case she is presenting many of the most severe symptoms very early on. In many ways I think I felt initial relief knowing there is a real answer or cause to the torticollis and other issues she has been experiencing. But as I have researched and talked to several doctors over the last few days I am realizing the road ahead for us is not an easy one and includes some form of neurological surgery to try to give her relief and the best chance for normal development. I'm back to holding loosely.

On the front of Danica's baby book is a quote from Roy Lessin.

Just think,
you’re here not by chance,
but by God’s choosing.
His hand formed you
and made you the person you are.
He compares you to no one else—
you are one of a kind.
You lack nothing that
His grace can’t give you.
He has allowed you to be here
at this time in history
to fulfill His special purpose
for this generation.

Beginning March 23, 2007, the day I found out I was pregnant with this little girl, God has been making a way for Danica and preserving her life in miraculous ways. Friday Dan emailed me the verses from Psalm 139 I clung to while fighting for her those long months laying in the hospital. "For you have formed my inward parts; You have covered me in my mother's womb. I will praise You, for I am fearfully and wonderfully made; Marvelous are Your works, And that my soul knows very well. My frame was not hidden from You, When I was made in secret, And skillfully wrought in the lowest parts of the earth. Your eyes saw my substance, being yet unformed. And in Your book they all were written, The days fashioned for me, When as yet there were none of them." These are Danica's life verses now.

Do I believe God makes no mistakes? Do I believe He lovingly formed this child's skull and brain how we find it today to fulfill His purpose in her life and in ours? Do I believe we lack nothing God's grace can't give us including strength for today and the days ahead? My verse for this week has been Mark 9:24 "I do believe; help me overcome my unbelief."

I'm afraid. I'm so very tired. I know that trusting God with my child is perhaps the hardest thing He will ask me to do. As He grows my faith and asks me to rest in His promises. I will fall. I will have moments of anger and confusion. I will want to quit and walk away.

Oswald Chambers wrote, "Living a life of faith means never knowing where you are being led. But it does mean loving and knowing the One who is leading. It is literally a life of faith, not of understanding and reason — a life of knowing him who calls us to go." Knowing a God who is unchanging and will do everything He says He will do is the only way I will navigate through the next weeks and months. I believe.