Sunday, September 20, 2009

Chiari



Tuesday our little Danica had an MRI 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."

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.

8 comments:

John Albert Thomas said...

While we know that God is laying down the tracks ahead, it sure is scary not knowing where they lead. Please know that we are praying for you all, dear friend.

John

Especially Heather said...

I so know what you are going through and I can hear your fear and your hope. Keep hanging loosely to His grace and rest your head in His lap...
You are loved.
-H

Angie said...

Oh how I love you, dear friend. And oh, how I love that little girl. And as much as I love you, it overflows into breathing prayers for you constantly. I know He is aching with you, as am I. And I know He is holding you as you seek to hold loosely. With you even though we are far apart. Kiss that sweet girl for me.

Natalie said...

http://www.lyricsmode.com/lyrics/r/rita_springer/i_have_to_believe.html

I am inspired by the lyrics of this song by Rita Spring. I hope you can be as. Someone had posted it on Angie's wall at one point. Praying for you and Danica and your family

Heather of the EO said...

I came from Angie's place. (Oh how I love that lady.) I know I'm a stranger to you, but I wanted you to know I'll pray for your sweet little girl and for your peace.

I'm glad you have answers, and from one brain baby Mama to another, I know how scary this is. My heart hurts for you.

Here's a little something you may relate to:

http://theextraordinaryordinary.blogspot.com/2008/12/lets-do-this.html

I share that just because sometimes it feels good to know that people who have been through similar things understand exactly what you're saying.

Peace to you...

Donnetta said...

I am here from Angie's blog. I wanted you to know I will be praying for you all today!

In the first 8 years of her life our daughter stared death in the face twice and we have been left with life long issues as a result.

Though I do not know exactly the road you are traveling or the experience you are facing, I do know that feeling of complete surrender and release of a child to God as His workings in their life are as He chooses and for His glory.

From one mother's heart to another... know mine is holding yours before the very throne of God this very day!

Rebecca said...

I am visiting from Angie to let you know I am praying for you and your sweet Danica.

Marissa216 said...

I ran upon your post while searching Chiari Malformation. Im 15 and going through the same thing,its scary and worrisome. I just want to let you know im praying for your little girl,shes strong.