"BE STILL AND KNOW THAT I AM GOD" PSALM 46:10

This verse just keeps coming to me over and over again in my head.  "Be still and know that I am God." Psalm 46:10.  It sounds so easy to do, but in reality it just isn't.  Especially when you feel like you are in a tornado, everything is spinning so fast and you just can't find a way out.  When it seems like waves just keep crashing against you pushing you further and further away from the shore.  I know this all sounds dark but honestly this is how I feel right now.  I feel hopeless and defeated.  I know He has a plan and its all in His time but honestly sometimes I want it on my time, on my terms. 

I took a break from blogging again just because I had to spend time with my boys and not worry about what I was going to be posting next.  Especially, with Carter leaving in...oh 4 weeks!  I actually wasn't going to blog all summer, but then I realized I started this blog to help others.  To show them that no matter what up hill battle they face, what season they are in, they can get through it.  I can't help them if I am not sharing our own experiences with this horrible, rotten no good disease! 

4 weeks ago I was laying with my 5 year old and rubbing his back to put him to sleep.  He was having leg pain....the same leg pain Carter and Zach get.  He was crying and begging me to make it stop.  Inside my heart was just breaking, knowing that this is most likely a sign of the disease starting in him.  Then I felt it...a small curve in his upper back between his shoulder blades.  My heart sank again.  All I wanted was for my boo bear to escape the wrath of this horrible, horrible disease!  I remember crying out to God that night why?  Why does he have to suffer too?  Why do all 3 of my precious, sweet boys have to deal with this "monster". (side note I am stealing the word monster from my sweet neighbor who used it to describe her cancer) 

Honestly, the next day I pushed all my fears into the back of my mind.  I told myself there is no way this is happening, it was just growing pains and I was tired.  Then the pain happened again and again.  So to ease my worries I made an appointment with our neurologist.  I did not tell anyone, not even his brothers.  My worse nightmare seems to be coming true. She said "it looks like this is early signs of CMT"  She said "without doing an NCV (nerve conduction velocity)  and a EMG(electromyogram) or DNA test she cannot say 100% that he has it".  But she said from the testing she did she would venture to guess he has it.  I remember her saying "his legs show some signs of weakness, he has a small curvature in his spine, just like Carter, pain in the legs, and then the rest is like the sound of the teachers in Charlie Brown, blah blah....Then she finished with " all this leads me to believe he is starting to show signs of CMT".  She suggested that I see our pediatrician and that we go to see Dr. I at Children's.  She wants an x-ray of his back so we have a starting point and wants me to keep his muscles as strong as I can.  I left the appointment feeling defeated.

A looks at me and says "mommy do I have what the brothers have?"  It took everything in me to not cry, to not scream at the top of my lungs "NO!!!!" Please God NO" I did what any mom would do and tickled him and said "do you mean you have a tickle monster coming to get you?  This along with an ice cream cone seemed to distract him.  Just when you think you can't take anymore, somehow, someway you find the strength to push through it, for the sake of your kids.  "Be still and know that I am God." Psalm 46:10 this was the first time I heard the verse in my head.

So now we are taking each day as it comes....trying to find our way out of the storm.  Praying for a cure and hoping that A's CMT does not progress. 

Remember, "STAY STRONG, BELIEVE"

Momma Hayes