It's now 10:30pm.  Cody woke up from the diastat injection about 2 hours ago.  He is so wobbly from the rescue drug, that when he tries to walk, he just tips over.  Sad thing is....all he wants to do is walk.  So we put he and Casey in the car and drove around to see if the drug effects would wear off a bit.  Cody loves car rides and we hoped it would be soothing for him.

As we drove, Don and I just shook our heads and said.....we were barely surviving before.  The only thing we had going for us was that we hadn't seen a "big" 2 minute seizure in 4 months.  And in one day, we saw a BIG seizure that lasted much longer than 2 minutes.  As we remembered the event, we realized it must have been more like 7-8 minutes because the seizure began in the bath-tub.  I waited the typical 2 minutes for it to end - and when it didn't I called for Don to come and help me.  Don swooped in and lifted Cody out of the tub and wrapped him in a towel and laid him on the bedroom floor.  We watched him for about another minute - sure it was about to end.  When it didn't he ran for the diastat and loaded it - which took another minute or two.  Then we administered the diastat and it took 2 minutes to work (I was finally watching my watch at that point.)  Time stands still during these seizures - so earlier we guessed at about 5 minutes.  But as soon as we compared notes we realized it was much longer. 

Casey was such a brave little boy.  He was in the bathroom when the seizure began, he was there when I screamed for Don....when we brought Cody into the bedroom and laid him on the floor, I said "Casey - can you go sit in the rocking chair for mommy?"  He scooted right over and sat in the chair and didn't make a peep the whole time.  I knew he was scared and kept trying to catch his eye in the midst of the seizure and say "it's okay buddy!  brother's just having an ouchie."  That's what we call them for Casey's sake - an "ouchie."  But after about 6 minutes, I started freaking out because the diastat didn't appear to be working - and Don was frantically calling 911 - I was cradling Cody and crying and praying - and even in the midst of that - I glanced at casey and he was sitting in the rocking chair looking away.  Clearly that was his coping mechanism....look in the other direction. 

Then the paramedics stormed in - more scariness for Casey.  And for us of course.  There's nothing like the glare of an ambulance light spiraling in through your living room window.  Seeing all the neighbors looking through their windows.  It's surreal.  At that point the diastat had kicked in but he wasn't breathing steadily.  All through the seizure he stopped breathing, then he'd wretch and gag, suck air in....and stop breathing again.  So I was very worried about his respiration.  After a few more minutes he was finally pink and breathing again.  So scary.  So stressful.  He was naked, swaddled in a towel - passed out in my lap.  He looked like a newborn again. 

In those moments when you think life hangs in the balance, it's amazing how many thoughts can cascade through your mind.  I stared at his little rosebud lips as I held him and remembered holding him that exact way when he was freshly born.  I sat, back then, in the same rocking chair that Casey used during the seizure.  Only back when Cody was an infant....it wasn't a rocking chair in a room full of seizures and terror.  It was a rocking chair in a brand new nursery covered in Bambi bedding and pastel blue blankets.  In that very rocking chair I sat with Cody the day we brought him home from the hospital.  Don left to buy some sort of supplies we needed - likely diapers or onesies.  I was left in this rocker with this bundle of amazing beauty.  I'll never forget reaching over and turning the stereo on - and a song came on I'll never forget.  It pierced my soul then - and it came to mind today as I held that little baby - who is now a very sick little boy.  It was "Miracle" and here are the lyrics.  The music video & song is at http://video.google.com/videoplay?docid=-3808734901662629469&hl=en

Miracle:
You're my life's one miracle
Everything I've done that's good
And you break my heart with tenderness
And I confess it's true
I never knew a love like this 'til you

You're the reason I was born
Now I finally know for sure
And I'm overwhelmed with happiness
So blessed to hold you close
The one that I love most
Though the future has so
much for you in store
Who could ever love you more?

The nearest thing to heaven
You're my angel from above
Only God creates such perfect love

When you smile at me, I cry
And to save your life I'd die
With a romance that is pure in heart
You are my dearest part
Whatever it requires
I live for your desires
Forget my own, your needs will come before
Who could ever love you more?

There is nothing you could ever do
To make me stop loving you
And every breath I take
Is always for your sake
You sleep inside my dreams and know for sure
Who could ever love you more?

Oh how I didn't know when Cody was a newborn....that those lyrics would ring so true?  Especially "....And to save your life I'd die"  and "whatever it requires, I live for your desires.  Forget my own, your needs will come before....."

So poignant.  So crazy.  So stinking unfair that the little newborn was dealt such a cruel hand.   

And yet.....here we are.  Now he's 4.  And we've traded all of those dreams we had for his future....for the simple hope that he stays alive. 

And in the midst of all of it, we have healthy little Casey - a warrior himself - who sees these seizures and sees his mommy crying over his brother.  Little Casey is resiliant - and has seen more terror in his little life than he should have.  Yet he's the happiest, giddiest, smiliest boy despite it all.  We are blessed and humbled to have each of these boys.  Each brings his own special gift to our lives.  Each, in his own right, a "Miracle."

Here is Casey today - before the madness.  He is the great equalizer.  We pray Cody has a restful sleep.  We will certainly not sleep - but will take shifts watching him.  Praying for a better day tomorrow.   

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Love, Shawna