Good Morning, everyone.
I wanted to continue the story for the many of you who are waiting to hear how everything went.
I want you to understand that this whole process is highly emotional for us, as her parents. No parent likes to see their child suffer, or go through pain. No parent likes to hear diagnosis that strike fear into the most stalwart of hearts. Our job as parents is to protect, love, raise up,
and teach our children to walk in faith.
But it is so hard when you struggle with those moments of faithlessness, isn’t it?
And that is why this precious child, my oldest daughter, is a daily blessing to me. Her faith never wavers. She literally, every single day, walks in a solid, unshakeable faith that God will see her through whatever she is facing ahead in her path.
It is inspiring, and you Â need to understand the mindset of this amazing child/woman to grasp how she does it.
You see, all her life the two words she has heard the most are: “Can’t”.
As in: “She can’t do that.”
“She won’t walk.”
“She can’t balance”
“She can’t ride a bike”
“She won’t ever run”
“She won’t be normal mentally.”
“She won’t eat solid food.”
“She can’t see right”
“She can’t balance on one foot.”
“She won’t grow to be a normal size.”
“She won’t ever live a normal life.”
She won’t ever hear.”
“She can’t understand how to talk right.”
We were told she would never walk. They were kinda right. She walked for exactly three days. After that she zoomed. Everywhere.
As fast as her legs could carry her.
We were told that she would live a life of obscurity,
inside a house where her immune system
would never allow her to be exposed to other people,
visiting with everyone she loved through the windows.
Does this look like a child who lives like that?
You see, my child is totally a modern day David. She doesn’t even blink when she is given a challenge, just gathers her stones of faith, hope and trust, and walks out to meet the giant. Not stumbling. Not afraid. Simply, and totally determined that whatever enemy, or challenge, or naysayer shouting that her God is not big enough to heal her Â is going down with one strike.
Gentle-Hearted but a Warrior.
Filled with Faith.
Confident in Hope.
Patient in Affliction.
And while the rest of us are quaking in our armor, and cowering in the face of an ugly giant that seems insurmountable, who is screaming out things that make our souls and hearts wither at the thought of enduring them,
she is already swinging her sling around her head.
Oh, for a faith like that.
And I wish I could paint a picture for you of how the last few weeks have been. As her parents, as we have watched her lay her head down on the kitchen table, and patiently endure another scorching headache
that leaves her weak and shaky.
As we have helped her shower because her strength has been low, and her head is roaring with dizziness…
As we have helped her up the stairs to her bedroom, supporting her to keep her from falling down the stairs and hurting herself because these spells come on at the most random times…..
What has been her response?
Monday was a day we have waited for. Agonized over. My very best friends have hugged me while I have wept in fear over this appointment. I did not want to hear that this amazing, blessed, precious child was going to need brain surgery again. Sometimes knowledge is a curse. Knowing and walking with a child like this, medically fragile, innumerable times in the hospital where the only thing to stave off boredom is being able to read her chart….can lead to knowing there is something wrong beyond what you have seen in a long time.
That this might be………the big one.
A shunt revision.
The single surgery that parents of kids with shunts dread because you remember all the horror stories of the kids your child has shared a room with over the years. The kids swathed in bandages with their eyes swollen shut. The ones who develop life threatening infections and spend weeks,
even months in the hospital.
It happens more than you would think, and we know it.
And honestly, folks, that is my Giant.
I could face a pack of roaring lions and spit in their face,
while they chewed on me.
I could lift a car off my child if I had to.
But this giant…it almost slays me.
But there is something I am not telling you, and it is such an intricate, foundational part of the story.
Three weeks ago, our sweet daughter asked to be prayed over by some of the men in our church. When we had done the original shunt series (xrays) and CT scan they had also run a few others tests, and determined that our daughter had absolutely no discernable hearing response in her left ear at all. She has struggled with this for her entire life, and actually was deaf until she was two…but that is another story for another time.
They prayed, and laid hands on her.
She could hear.
Not just a shout from a few feet away.
From her father.
And then they prayed for her shunt.
And we walked in faith.
I clung to that, marveling at the miracle of seeing my daughter hearing and responding, running down the stairs when she heard me call instead of having to go get her from her bedroom.
So sitting in the office of the neurosurgeon on Monday, I had to sit on my hands to keep them from shaking. I had to bite my tongue to keep my lip from trembling. I had to hold every ounce of self control in check so that I could get through the next few moments without curling up on the floor
I was clinging to that sitting in the office.
Just perhaps, God is working on this too.
And what did the doctor say?
“This is non-critical.”
“We are going to try non-surgical intervention.”
It is a good thing I was not standing, because I would have been on the floor.
You see her shunt is not just working,Â
it is quite possible that her body has taken over a process that it has rejected for 13 years.Â
What does that mean?
It means that she may not need that shunt.
It means that she may be one step away from not only beating every single thing that they have laid out for her her entire life,
but that the giant is slowly sinking to the ground,
Â her stone of faith buried in his head,
for the final death knell of something that has dominated her life time and time again.
and I know, really I know, that you don’t understand that, you can’t possibly understand how
and faith building,
and inspiring that is.
But I have to share with you because it is all of those things for us.
Right now she is wearing a brace around her middle in the hopes of reversing the flow and adding more fluid back to the brain so as to ease the dizziness, and headaches…all of which are symptoms of what she has been experiencing with her shunt. The brain has four ventricles (pockets of fluid) and all except one were either drained or smaller than normal, which is concerning.
Once her body responds to that we move on to Part B of the Grand Plan.
If her body is taking over the job, there is a chance they will disconnect the tubing and see what happens while she is observed at a hospital. After all, if she does not need it, why keep it?
If things are still looking bad in a couple weeks, then they might go in and place a valve that can regulate the flow better and keep it from draining so fast.
We don’t know what will happen.
But we do know that the God that we serve is continually showing up, is continually pointing us right back to Him through the ways in which He works through our daughter.
We don’t even need to step on the battlefield.
He is already there.
Many Blessings to you and yours,
Praise God!!! Prayer is an amazing tool God gave us and the amazing gift of Jesus to fulfill the promise of Life to us! We are continuing to pray and rejoice with you!
God is so good! He continually answers our prayers and is obviously working MIRACLES into the life of your child, and in to your family. Through THIS AMAZING answer to prayer – God is showing the world, though your daughter, that He is here, He is with us, He still answers prayer and miracles are NOT just a figment of imagination, or something of the past that don’t happen any more. Praise the Lord!
I think our bodies are amazing things and with all the love she’s getting, there’s no reason her body can’t heal itself.
This is awesome news! How Great is our God! 🙂
There is a childrens song I used to sing with my kids that so applies to this “My(our) God is so great so strong and so mighty there’s nothing my(our) God cannot do”. I am so glad we serve a God that knows us and holds us up even when we worry(as I know you have for your daughter). It is so great reading your testimony and hers. Praise the Lord who reigns forever!!
Heather, this is so amazing! I can totally relate to you and your daughter. Rory has had a life of can’ts, won’ts, and we-just-don’t-knows. The faith and strength these children have is so phenomenal and inspirational. Rory’s digestive tract shut down completely from top to bottom for over 5 years, and the next 2 1/2 years we struggled as it very slowly progressed and fell back time and time again until she finally was able to eat her normal “specialized diet” again. She survived on TPN and Lipids. But today her system is working better than it ever has before in her lifetime. There is true power in pray. We believe. I hope and pray that everything goes well for you and yours.
Life With Lorelai
Oh my goodness, this is such an amazing story of hope. She sounds like one of the strongest, most full of life people there are. What faith she has. How beautiful. Prayers for continued healing.
Good morning Heather. I just wanted to let you know that you have been featured on my blog “At the Lake” today. Congratulations!
Thank you for sharing this. Your daughter and your family are in my prayers.
Briana from Texas
That is an amazing story! Thank you so much for sharing this with us!