It is Well With My Soul: Part 2

This was taken the night my voice changed. I adore this picture of my Chloé girl. 

On Monday, June 13th I had my swallow study.  The lady who conducted it was puzzled.  Said she has done hundreds of these and never seen anything quite like it... Especially someone who was just 32 years old and healthy.  Typically they see these kinds of things in the elderly.   Apparently as I swallowed a sugar pill they were all holding their breath... watching as it sat on top of my airway in a pool of saliva and mucus as I strained to get it down my throat.   A normal person can swallow a huge sip of water in 1 fluid motion.  For me, a TINY sip of water took me 4 swallows and was very tiring and taxing.  As you can imagine... throw FOOD into the mix and it got REALLY difficult and challenging.  They told me after this appointment that I would need months of speech therapy which was pretty deflating.

As we went home to await the MRI results and follow up with my ENT, I got in the shower and just kneeled and cried out to God.  Desperation. Raw emotion. Uncertainty.   My sister Katy is getting married this summer and the last thing I wanted was to be given a bad diagnosis. I had to discipline myself to not put myself into scenarios that may never actually pan out.  That is Satan's favorite form of torture... Making you scared of something that isn't actually happening.

We drove to the doctor's appointment and when the ENT told me my scans came back ALL CLEAR, I breathed the biggest sigh of relief! PRAISE YOU, God! The doctor admitted that he was convinced that this was either the result of a stroke or that I had a mass/ tumor cutting off the function of that nerve but he was wrong! He told me he also had NEVER seen a case like this but that based on the MRI there was no permanent damage done but he still wanted me to meet with a neurologist to maybe see if he had seen something like this before.  His thought was that it was related to the nerve losing functionality for some reason.  So the search for WHY continued but at least we were able to rule out the scary stuff.

As I called my Dad on the way home, I broke down in tears.  I told him this whole time I was SO THANKFUL it was me and not one of my girls or Logan. I didn't think I would be able to handle the helplessness I would feel if it was one of them.  My voice cracked as I told him how hard it must have been to watch me go through this and not have any way to help.  He said it doesn't matter how old your kids get, the love you have for your kids only gets stronger.

So we pushed forward and made an appointment with the neurologist for Wednesday,  June 15 hoping for some clues, clarity, and answers. After meeting with him, he also admitted he had never seen a case like mine ever before.  The fact that it was so sudden and so acute and specific without any other accompanying symptoms.  He was convinced that it was viral because of the timing coming directly after the upper respiratory infection.  His thought was that the virus attacked the nerve that controls my speech and swallowing and he told me 1 of 2 things will happen now... I will either get better as the virus runs its course OR I could wake up and it would be worse.  The thing they are testing me for is  Myasthenia Gravis.  3-30 people out of every 1 MILLION get it. SUPER DUPER RARE.  But what happens is the virus attacks various muscles. He told me in that case I could potentially wake up one morning and not be able to walk or lift my arms.  (That was fun news) In that case I would need to go to the hospital for 5 days and get a blood transfusion.  It was treatable though, so that was positive.  So we took a ton of blood work that day and moved forward with scheduling a spinal tap to test the protein in my spinal fluid.

At that point (and still now) I remind myself.... I CAN HANDLE THIS. This is a life-giving diagnosis.  This is not cancer. This is not as a result of a stroke. I will be here to watch my girls grow up. I am HERE. I am THANKFUL. I am at PEACE.  He is the Great Physician and He isn't thrown off by this.  He isn't puzzled.  He knows the WHY and the HOW and the DURATION and I may not get to know.  Doctors may be confused but it feels good to know that I have a Good Father who loves me and has this entire situation under control.


Let the heroes rest
Let the striving cease
I lay down my crown
Here at Your feet

I will trust 
Here in the mystery
I will trust 
In You completely

Awake my soul to sing
With Your breath in me
I will worship
You taught my feet
To dance upon disappointment
And I, I will worship

Let the weary rise
Lift their eyes to see
Your love crushing every lie
Every doubt and fear 

I will trust 
Here in the mystery
I will trust 
In You completely

Awake my soul to sing
With Your breath in me
I will worship
You taught my feet
To dance upon disappointment
And I, I will worship

Hallelujah
Hallelujah
You are making all things new

Awake my soul to sing
With Your breath in me
I will worship
You taught my feet
To dance upon disappointment
And I, I will worship