Hi all - boy did we have a scare today.  I'd just come back from a neurology appt. at Children's with Cody.  He was lounging around the house and went into a giganto seizure.  Diastat (a rescue medicine) was given rectally which is supposed to stop a seizure nearly immediately.  That's the drug used for kids who go into status seizures - which are seizures that don't stop.  A big slug of diastat, and the seizure stops.  Of course the child is knocked out for hours too.  So Cody got his 12.5 mg's of diastat....only this time it was different.  He kept having 'spasms'!  Every 3-5 minutes he'd go into a light little jerk.  By the time I called the neurologist on call and she got back to me, an hour had gone by.  I was in a panic - fearing that this was one big long seizure that just wasn't stopping.  She advised me to do another dose of diastat and if that didn't resolve them, to call an ambulance.  So that's what I did - poor little guy.  That dose did stop the jerks.  And it knocked him on his keester.  But leave it to Cody - he slept for about an hour - then woke up and insisted on walking around even though he was completely drugged.  He couldn't walk more than 2 feet without falling.  And I was all alone with both boys!!!  I put Cody in his high chair to try to keep him safe and turned on a video for Casey.  That worked for a bit, but Cody started to fuss because he wanted to get out and be free.  So I put them both in the car and drove around until Don got home.  What a drama.  And he went on to keep having little seizures all night.  This child has enough tranquilizer in him to take down an elephant - and he is still seizing!!!  It's days like this that totally throw me for a loop - I get so despondent.  It is so horrid putting all these drugs into such a little tiny body.  And even more horrid when even all those drugs - don't put a dent in his seizures.  He's finally asleep tonight - but I dread the night to come.  His seizures are kind of like a wildfire - once they ignite - they usually gain momentum.  It's so interesting because I told Don Saturday, "I feel some big stuff coming on" and it wasn't based on anything.  Cody had a great seizure week.  It's just 'that' feeling.  Sure enough we've had big seizures the last 2 days.  And poor little Casey just watches it all as if it's normal now - dancing around while his brother convulses.  Casey used to get scared by it - but now I sense that he kind goes into hyper mode and finds crazy things to do to avoid the moment.  He'll knock something over, jump on the couch, act like a monkey - no doubt trying to deflect the tension.  And poor Don, whose had a busy and stressful work day.  He drives up and I'm in a panic with both boys in the car - worried that we'll soon be en route to the hospital with Cody.  I had him keep driving them around to keep Cody confined and safe - while I got back to the Dr's. 

It's so crazy - I had gotten up this morning thinking 'there's NO way I'm going to get this stuff done today!'  I had an appt. at Children's, a bunch of feeding supplies to order, insurance forms to fill out and fax, groceries, laundry...I felt totally overwhelmed.  But in an instant, it all goes away as a seizure trumps all - and the entire day shifts to just taking care of little Cody.  Such is our life.  I always learn the same lesson - 'be careful when you think you're overwhelmed - it can get a lot worse!'  So all the errands and obligations get pushed to tomorrow.  And all of life is given perspective as we battle for Cody's very life one more day.  Suddenly the laundry doesn't matter.  What's for dinner is unimportant.  Forms, appointments, faxes - nothing else matters but Cody's little body.  And his brother standing nearby. 

I sit here at 10:30pm feeling like I've been to war all day.  Many of you know just what I mean.  You barely get them to bed, then it's time to get tomorrow's G-tube feeding prepared, supplements put in little plastic cups, overnight meds dispensed and put by the bedside with a spoonful of applesauce, dishes done, table cleaned, doors locked....is there time to email his neurologist?  Is there time to research that new seizure drug?  Can I leave a message for the hospital that I need more extension tubes to feed Cody with?  Now it's 11:30pm.  WHY didn't I go to sleep while I could?  Cody is stirring - nope - he's up.  Can his body take anything else to make him sleep?  Should I just stay up with him and let him sleep tomorrow?  But he has that therapy appt. that we can't miss...

It goes on and on.  Such a crazy life.  Sometimes it seems like I spend all my time 'managing' Cody's illness instead of being WITH Cody!  Not to mention Casey's childhood slipping through my fingers.  But I remind myself in these late hours, that God said 'yes' to this.  For some reason. 

I mentioned that I finished "The Shack" - and I think it's a good read.  Although it's hard emotionally - particularly if you have a great sadness over a child.  But worth it - as long as you don't count it as theology - but as metaphor.  I totally identify with Mackenzie's 'great sadness' - a cloak of sadness and anger he wears regarding the loss of his child.  He's mad at God.  So am I sometimes.  A couple of quotes I underlined...the first is God talking to the man character:

"The real underlying flaw in your life, Mackenzie, is that you don't think that I am good.  If you knew I was good and that everything - the means, the ends, and all the processes of individual lives - is all covered by my goodness, then while you might not always understand what I am doing, you would trust me.  But you don't."

"Trust is the fruit of a relationship in which you know you are loved.  Because you do not know that I love you, you cannot trust me."

Mackenzie:  "I just can't imagine any final outcome that would justify all this."  Papa (God) rose out of the chair and walked around the table to give him a big squeeze, "We're not justifying it.  We are redeeming it."

That's just a tidbit.  For special needs parents, I think there are some really important themes about anger toward God for the pain in our lives over the suffering of our children.  It doesn't have any pat answers - but it does help with the anger piece.  So there's my two-bit book review.  :)

Must go for now - it's 11pm and there's stuff to do! 

with love,  Shawna