Hi there.  This is night 4 of Cody being up at 2 or 3am with gas pain.  I have no idea why this came up so suddenly - he'll sleep great for awhile - then he'll have a string of nights where he's up half the night.  Crazy.  Don took the boys to church so I could sleep.  Don goes back to work tomorrow and I take over these two little ones alone again - and I pray that Cody sleeps through the night tonight so I don't start the week with no sleep.  Don won't get vacation again this year - we hoard all of it for surgeries and ER trips.  So this past 2 weeks was it - and it was unfortunate that we were snowed in for much of it.  We had such grand ideas of getting a bunch of our own dentist, eye appts, physicals, etc. done.  We wanted to organize the house.  Clean.  Nothing got done.  On the snow days, Cody was so out of control that Don and I both just took turns managing him and trying to swap naps because we'd been up all night with him.  It seems like our whole vacation was spent swapping naps - trying to keep Cody from spiraling down too far without his therapies - taking him to Dr. Appts - and that's about it.  I have a friend who told me that now that he's been diagnosed with a life threatening condition, we qualify for Make a Wish - where they send you on a family vacation.  We talked about it and just can't see the value until things settle down (if they ever do.)  I can't imagine being at Disneyland or Hawaii and just sitting around taking turns napping while the other person wrangles both boys.  So we'll keep on our radar screen for the future...perhaps when Casey can enjoy it more.  Till then our biggest prayer and need is for sleep. 

Did you hear about John Travolta's son Jett - who died at 16 from the impacts of a seizure?  It breaks my heart.  I've always like John Travolta's acting.  And I knew his son had some health issues but didn't know it was seizure-related.  Don and I talked a lot about this over the weekend.  I read that Travolta hired an aide to be with Jett 24/7.  They also installed a video monitor next to his bed, and a sound system in the house so they'd know at all times where he was and how he was doing, and where he was in the night.  Our first reaction to that news was, "wow - wouldn't it be NICE to have the kind of money to give your child that much support - someone with him 24/7!"  Yet....in the big picture....it didn't protect their son, sadly.  I often say "it's all about money" - meaning that when you have a sick child, more money gets you more experts looking at your son.  More money gets him more therapies.  More money gets you more in-home support from nannies, house cleaners, etc.  More money lets you buy things that help your child - you can have a home with a bigger room, with more swings, with monitors, with a big jacuzzi to play in, etc. etc etc.  My husband is a great provider, don't get me wrong.  But among the special needs community, it is a keen truth that this life is incredibly expensive - and often what stands between the 'best' for your child and what you'll settle for - is money.  Yet with all their money, the Travoltas couldn't control their son's fate.  I admire all that they did - they clearly loved him and did every single thing they could to try to keep him safe.  But their tragedy is such a stark reminder that as parents, we only have a certain amount of control.  And with us "regular Joe's" the 24/7 person who watches our children is....us!  There is no time, even in my sleep, that I am not listening for Cody.  I wake up if he flinches.  There is so much pressure and responsibility...and when you live your life in constant hyper-vigilence for seizures - I can't imagine knowing that it was a seizure caused my son's death.  I would feel so responsible - even though I'd know it wasn't my fault.  It's just what parents do - especially where seizures are involved.  They are a beast you can't tame.  You watch them take over your child's body.  YOUR child.  And try as you might, with all you can think of, you can't stop them.  All you can do is set up your life to 'live' with them and keep your child safe in spite of them.  What a heartbreak for them.  They are in my prayers today - and I pray we never endure what they are going through - burying our own child.  I can't imagine a pain greater. 

So much is out of our control.  I can't imagine enduring a child's death without the firm knowledge that Heaven awaits and that this is not the end.  Regardless of what happens here - I cling to that truth.  Rick Warren's book "Purpose Driven Life" and a great chapter about Heaven.  Here it is if you're interested.  It keeps me focused on what's true:

Made to Last Forever - chapter 6