Hi there, I hope you are all having a nice Friday.  Our week was jam packed with therapies, a visit from an out of town friend, and unfortunately lots of seizures.  Today Cody was in the bathtub enjoying one of his twice daily jacuzzi baths when he literally in a flash, slipped under the water.  He went tonic (stiffened) and tipped over literally in seconds.  I grabbed him but when he's completely stiff he is so hard to get out of the water and so slippery!  He was convulsing and turning blue - I wrapped him in a blanket and laid him on the bed.  His tonic seizure gave way to about 3 minutes of spasms at the end.  ARGH.  He had another 2 minute seizure during therapy today.  I'm so weary.  One of those big seizures and it's like it literally knocks the life out of me for the rest of the day.  It takes me a bunch of hours to get back to any semblence of lightness.  Instead, I instantly take on this heavy mantle - the foreboding feeling that 'here we go again.'  If you have a child with seizures I'm guessing you'll identify with this.  For some reason, in the presence of no real reason or logic, you wake up each morning with the same thought:  maybe TODAY will be the end.   Maybe today we won't see a seizure.  Maybe this is it - maybe today begins our run of seizure freedom.  As naive as it is day after day, you still do it.  You still wake up with hope - and hold on top hope until proven otherwise.  And if you go a day or two without seeing one, you hope even more.  You wait on pins and needles.  And when the seizure does come - it is crushing.  And it's like this giantic cosmic slap in the face saying 'idiot!  here I am!  you can't get rid of me!' 

And you start all over again.  I suppose it's human nature.  Without that daily hope, it would be so dismal.  And I write (for the hundredth time) on the top of my 'to do' list:  "research mitochondrial disease. research seizures.  research new drugs.  research gastro pain and seizures."  As if there's something new to find.  But again, I research in hope.  hope.  hope. 

And I always have to remind myself to do a check.  I have to check myself everytime I hope.  I have to remind myself that my hope is in HIM, not in research...not in seizures disappearing...not in medicine fixing.  It's so easy to switch into 'fix it' mode and start trying to control things. 

But I am learning over time, that when those moments arise as they always do....when the seizure comes....and when my knee jerk response is to research, fix, medicate....that I must first remember to hope in Him.  To trust Him.  To let Him fix.  To let Him control.  Even when it seems like He is asleep at the wheel.  Surrendering Cody to the Lord's keeping is the challenge of my life.  I want to grip tightly, hold on, control, fix.  God wants me to release, trust, pray, surrender.  Oh how hard it is.  I think it's good to research, and to do all I can for my little hero.  But I also know my achilles heel is to think that it's all up to me and that it all rests on my shoulders. 

All such hard lessons.  Cody's seizures are a daily reminder that I have no control.  That is my great lesson in life.  The one I have to keep learning.  And what an uncomfortable position that is - to have no control.  And yet that is the only position which allows God to work....as I step aside with my hands up saying 'this is beyond me.  I can't fix this.' 

Well, those are my deep thoughts for a Friday night!  I haven't slept in two nights so I'm probably a little punch drunk at the keyboard.  Cody's up for a few hours each night lately with tummy problems. 

We pray for answers to those tummy problems.  An end to his seizures.  Sleep.  And as we pray, we remind ourselves that God IS in control, He IS able, and He does have a plan for Cody's life.  A plan for good.  And we trust that.

with love, Shawna