Hi everyone.  Well we made a big leap for us.  Today Don and I took Casey to the zoo and left Cody with a trusted friend.  His long seizures have kept me from leaving him for so long.  But poor Casey deserved some serious mom and dad time so we took a leap of faith and planned this outing. 

We piled into the car at 10am and I left a long list of 'what to do in case' with our friend Shoshannah.  We hit tons of traffic on the way and sat in the car for an hour just to get to the zoo - but we finally arrived and were determined to have fun.  Then it happened, my phone rang and I saw the dreaded 'Shoshannah' as the caller ID.  I picked up and she said Cody was in mid-seizure - he'd started seizing in the bath tub.  It had been going on 2-3 minutes and he was moving into the 'spasms' phase where he jerks every few seconds.  My heart sunk.  I talked to her through the next couple of minutes and finally he seemed to be coming out of it.  It was probably 4-5 minutes before he was completely over it.  She is a TROOPER and really handled it well.  But gosh - I felt sick.  Of course I wanted to go home but Don always rebounds much better than I.  I told Shoshannah to call the second he has another bad one and we went inside.  That was a bold decision.  We'd traveled so long to get there and Casey was so excited, as were we.  I prayed, tried to shake off the fear, and we went to the zoo.

I have to say, I think the entire 3 hours we were there, I was only half there.  My mind/heart were worrying about Cody.  And not only that....I was processing the seizure in light of the fact that he's on a new medicine (Rufinamide) that should be working by now.  We haven't seen a 'big' seizure in almost 2 weeks so today was a blow - and a confirmation that this new drug is not working.  So as we trekked through the zoo, I was deep in though and emotion.  It's such a twisted existence - trying to 'enjoy' and have fun with Casey while feeling completely immobilized at the news about Cody.  It's a double life I often lead.  I kept telling myself, 'snap out of it!  You have so little time with Casey alone - treasure this!'  But it's SO hard to do.  I feel sick that this new drug was so promising, and after over 2 weeks it is doing nothing.  Such a disappointment.  We see our neurologist in a couple of weeks and will have to once again stare at him and say, 'what now?'  We did the VNS.  We did the 'new' seizure medicine that's supposedly the hottest ticket in town.  And his seizures have only gotten worse.  Am I simply left to live a double life like I did today - trying to enjoy life - but constantly surpressing my fright?

I checked in with Maggie's blog at blinknow.org tonight.  She helps me get perspective.  She is serving an orphanage full of children who are poor, sick, stranded...each child as precious as Cody.  Her blog helps me keep perspective about how lucky we are.  How grateful I am for our medical care, our medicine, our health insurance.  Maggie has 20 Cody's on her hands.  And she is amazing - and only 22! 

There were wonderful moments with Casey despite my ridiculous inability to stop worrying about Cody.  Casey befriended a peacock!  He has been obsessed with birds for quite some time.  He imitates the "caw caw" of the crows outside night and day.  He sits by our windows looking at the trees outside - waiting for birds to perch.  So it was particularly sweet that he got an up close and personal experience with his new blue friend!

The bird climbed on top of a picnic table, and so did Casey!

So yes, there were fun moments.  I pray that the Lord will continue to teach me the art of living in the moment, and leaving my worries with Him.  Oh the time I waste thinking, stewing, fearing.  I missed out on much of a great day with Casey - which I will neve have back.  How to trust the Lord with Cody - so that I can be free to live without constantly being preoccupied with how Cody's doing?  That is the question.  And only He can show me the answer.  I'll get there - or at least I'll get better at it.  I'm confident of that. 

with love, Shawna