It is the oddest thing I know - waking up to the sound of my child screaming in pain.  It is an icy cold slap in the face - to what was a warm, blanketed, deep sleep.  Cody sleeps next to me because he has seizures a lot of times in the night.  But the seizures don't do this.  The 'wake up scream' is different.  He goes from a deep sound sleep - to bolting upright with a scream - then he sobs and sobs and sobs with real tears streaming down his face.  I say 'real tears' because it is so rare that we ever see them.  Cody has some kind of weird pain levels because in general, he never feels pain.  He can hurt himself terribly - and you'll never see even a wince cross his face.  I remember one time his fingernail fell off (he must have slammed it or hit it somehow) and I didn't even know until I saw it dangling from a thread on his finger.  He didn't even notice.  So when Cody cries REAL tears - we know something's 'up.' 

It has become an 'accepted' part of our lives - these 'attacks' as I call them.  Over the years I have hauled him to every specialist I could find to try to uncover the mystery behind the screams and tears.  We've done Catscans, Urology visits with X-rays, Ear, Nose and Throat docs, you name it.  This week Cody's had two 'attacks' in the night and I did the same rounds - I first took him to his pediatrician.  Cody comes in screaming like a wild animal - and gets the once over - ear, nose, throat, breathing - the Dr. asks if anything new has happened.  He checks all his joints, his temp.  And inevitably he sends me on my way without an answer.  This particular day I even took him to a chiropracter to see if there was something misaligned - or out of whack.  Still screaming as we left.

No Dr. on this planet, no treatment, no amount of prayer seems to eradicate these 'attacks.'  So we have had to find a way to cope with them.  We have had to make them - 'normal' in a way - or else we'll simply fall apart.  Cody had another 'attack' overnight and this morning he is wandering around crying again.  It calls a halt to all therapies, all plans.  The day is spent comforting him - giving him motrin in case it's a headache.  Giving him Gas-X or activated charcoal in case it's gas.  Nothing helps.  Oh, the sadness of a non-verbal child who can't put in words what he's crying about.

I think in my struggle to just understand what happens on these days, I have chalked it up to simply the mitochondrial disease.  I really believe that there are just 'bad' days where muscles hurt deep down on an almost cellular level. 

There are so many fronts to battle - seizures, this random pain, sensory challenges, no words.  It can feel like climbing Mt. Everest just getting out of bed.

But then there are the good days.  The days when seizures don't invade our universe.  The days when Cody wakes up with a giggle.  The days when he breaks through the haze and looks me straight in the eye.  And - especially - the rare moments when he climbs on my lap to give me a hug.  That's a common occurrence for most parents, but for me, it is a moment where I hit the 'pause' button in life and just sit there and feel.  I sit, and stop, and soak up every single feeling about it....the smell of his hair...the softness of his skin...and then BAM it's over.  He's off my lap and on to raspberrying non-stop in his own world.  But oh those moments - they are collected and strung together in my mind.  They are my food and water on days I feel I can't do this any longer. 

So on we go - the good and the bad.  The sun and the rain.  He gives and takes away - He gives and takes away - and still we choose to say - Lord blessed be Your name.

Last night Cody had 7 seizures overnight - each about 1/2 hour apart.  It is a rough time right now.  I still believe with all my heart that his seizures are directly tied to his gut pain.  I am looking for the 'top dog' in the mitochondrial gastro field as I feel a trip in our near future.   There is just SO much to this illness.  A disease that affects every organ.  It just depends on the day which organ you're going to battle.

Don and I had a date night last night - went to see 'Date Night' as a matter of fact.  It was hysterical.  And it was good to get out.  Would you believe one of Cody's therapists offered to come over so we could get out?  She has dealt with seizures, meds, and all of  Cody's issues during therapy so she knew I would feel safe leaving him with her.  Lindsey - THANK YOU!  Lindsey is one of the sunshiniest people I know.  She brought her sister so they could watch both boys.  These are the islands of peace in this storm of life -- when someone does something so caring.  And when she walks through our door and makes a bee-line for Cody because she truly adores him.  Last night was a blessing to us on so many levels - getting to go out with Don - knowing that my boys were in such good hands.  We are grateful for so much.

That's it for now - much love to you all!

Shawna and company