July 20, 2015 is one of those days that I will never forget.
The morning started out so well and full of promise. My dearest
best friend, her husband, and their sweet one year old boy were actually
spending the weekend with us. We had
just finished up breakfast when I received a message that I had a new test
result in my daughter’s my chart account.
In the two weeks that had followed this day my sweet daughter had a
number of blood tests, met with physicians, and had even had an MRI due to
unexplained weight loss and lack of desire to eat.
I quickly signed on and scanned through her most recent MRI test
results. Then the bad words started to
pop out at me like: anomaly, decrease CSF, less than expected for age,
etc. All of the sudden my heart sank and
I frantically wanted to talk to a doctor.
As I continued reading I found the words that would take my world and
shake it upside down.
Chiari One
I frantically hit print and raced to find my husband. He was about to leave to take our son to swim
lessons. I stopped him as I tried to
compose myself and said, “Call your Dad.
I want to know what this means. I
know it’s bad but I want to know how bad.”
You see God in His sweet sovereignty had given me a father-in-law who
just happened to be a practicing physician in Arkansas. Thankfully he was able to talk with us and we
later spoke with our pediatrician that afternoon. We
learned that our happy, seemingly healthy looking daughter had something wrong
in her brain. Not a broken bone, not a bad
virus or RSV again, but something inside her sweet head.
Although it is supposedly very common I had never heard the word Chiari
(pronounced kee-AHR-ee). A Chiari one
malformation is where the back of the brain (cerebellum) goes down below the
base of the skull and into the upper spinal canal. It is not cancer but it is scary. Young children with Chiari experience trouble
feeding, abnormal breathing, and headaches among other things. The best treatment is surgery to make more space for the brain and spinal cord.
The past few weeks have been incredibly
difficult. I think I have written this post at least ten times in my
mind. What words can do justice when
your heart is breaking? In so many ways
it truly does not seem possible. How could my happy girl have something
wrong with her brain? Right now I think
we are living between shock and denial. I
wonder what is going to happen to Eva right now. Will she have surgery on her precious
head? How in the world are we going to
get her to eat?
There are many days when things feel quite
overwhelming but I am so thankful for the grace of God that continues to pour
down on us. Personally for me one of the
hardest things to swallow is really thinking about the future and what Eva’s
life will look like. No matter what
happens our family is strong because we trust in a God who knew exactly that
chiari would enter our world. He also
ordained that we would move here to our current ministry where we live less
than an hour from one of the best children’s hospitals in America. My prayer through everything is that our
entire family will be able to say with the Psalmist in Psalm 91:2, “I will say to
the Lord, My refuge and my fortress, my God, in whom I trust.”
Right now my life is crazy.
My week is filled with two to three therapy appointments per week not to
mention numerous visits to specialists, telephone calls, keeping a meticulous
food diary, and trying to manage everything else in our lives. Our big appointment takes place in September
in just a few short weeks where we find out if the neurosurgeons at Cincinnati
Children’s Hospital think my sweet Eva needs to have surgery now or if they
will postpone it for a few years. We do
covet your prayers knowing that a God who can raise the dead can also heal our
sweet girl. We just don’t know if God
will choose to heal Eva through the skilled hands of the team at Cincinnati
Children’s.
I am planning on writing regular updates on our blog about our
daughter’s progress. Not only is this an
incredibly emotional journey but I have not been able to find much on the
internet for a seemingly common brain malformation. I know for myself that I would love to read
through the story of someone else’s journey through Chiari and feeding
issues.
For now let me leave you with a quote from Sarah Edwards to her
daughter Esther right after Sarah’s husband Jonathan Edwards and her son-in-law
died within two weeks of one another:
“My very dear child, What shall I say? A holy and good God has covered us with a
dark cloud. O that we may kiss the rod,
and lay our hands upon our mouths! The
Lord has done it. He has made me adore
his goodness, that we had him so long.
But my God lives, and he has my heart.
O what a legacy my husband, and your father, has left us! We are all given to God; and there I am, and
love to be.”
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