Hi there - happy Saturday to you!  We are enjoying today.  I got out for 2 HOURS all by myself!  Course it was just to grocery shop, but still!  To me, that's as good as a trip to Vegas!  No kids...no diapers...no meals...no seizures...no drool...you get the picture.  I leisurely strolled up and down every aisle.  Grabbed a people magazine and looked at the pictures.  Brittney Spears...oy vay.  One word:  COUNSELING!  Ya gotta figure though - living in a fish bowl like she does would drive anyone pretty nutso!  But I digress....

I had two such sweet times putting Casey to sleep.  He lays next to me on the bed, nurses for awhile, starts to drift off but opens his eyes one last time to make sure I'm there.  Then he floats off into dreamland, safe and secure.  It is such a rapturous thing to usher your baby into sleep time.  I'll never get enough of it.  As I've said many times, this trial with Cody has given me many gifts, oddly.  Probably one of the biggest is to be "in the moment" most of the time.  Not many things go by without me noticing.  I watch Casey sleep - watch his chest move up and down - look at the curve of his little fringe of eyelashes.  I soak him in.  I pray for good health for him - for no seizures.  I hold his hand.  I let no moment go by without trying my best to drink it in for all it's worth.  We have but 1 chance with these little ones - they are grown up in a fleeting instant.  Now that Cody's off to school each day I have a bit more time to enjoy Casey and I triple love it.

Cody did great this past week at school I'm told.  He went from 8:30 - noon the whole week!  He comes out pretty tired, but that's good.  His daily schedule includes circle time, recess, snack, "table time" which means working on different skills with toys and such,free play, lunch, and home.  Right after I drop him off at 8:30 I go home and snuggle up with Casey for his morning nap - YUM.  I usually don't stay cause there's too much to do - but I enjoy the process.

Cody's still having about 25-50 tiny seizures a day.  He's in the WEIRDEST phase.  Who knows why, but right now he's OBSESSED with sounds in his ear.  He'll walk up to me or Don and tilt his head - cueing us to make a sound for him.  He listens with his ear pressed up against our mouth - jump off our lap - go hit something with both hands (SMACK) and then climb back on our laps, poke our mouths and cue us again to make a noise for him.  Sounds cute, right?  I thought so too until it went on for the last 3 days!  I'm talking - nothing else.  He does this repetitively all day and all night.  And when you won't make a sound for him, he cries and is totally undone.  In addition, he's scratching himself more (self stimulation), masturbating, eye poking - all his negative behaviors have flared.  I don't know if it's extra stress from starting school or what.  I took him to the Dr. to make sure it wasn't an illness and he said Cody does have a red throat which could be a cold coming or going.  But he's had tons of colds and sore throats and he's never acted this way.  I'm not sure what to make of it.  Like most of his weird quirks, I expect this new thing to come and go over time.  Sure is weird.  It's like he gets obsessive over things.  And since he's been this way, he won't go to bed or take a nap.  He fights it and fights it - looking for more noises in his ear.  He doens't go to bed till 11pm and is up at 5 or 6 am.  We've tried everything to get him to wind down, go to sleep, etc. but he just won't.  I pray he calms down before our hospital stay monday because this will be torture there.  If your child has done this, please write and let me know if you figured out what it was! 

I've been enjoying reading the posts from the website I quoted yesterday www.ninetynineballoons.com.  If you didn't visit the site, this dad's precious son Eliot died after 99 days of life from trisomy 18 - a genetic defect.  Here's an exerpt from his dad's blog about grief:

"A question has been bumping around the recesses of my mind as of late.

What is the destination?

I have come to view mourning as a journey. Let me be the first to admit that sounds a little hokey, but come on, let it slide.

The pathway is littered with obstacles, each differing in degrees of difficulty. A recurring hurdle of hardness-of-heart here, a pothole labeled despair there. Unforeseen twists and turns are the norm; all the while, the lone desire of the traveler is to stop - to rest. However, it is quickly realized that pit stops are dangerous as well. For it is here that the strangers, with names such as Fear and Skepticism, attempt to become traveling companions.

There is an alternative to traveling the road of mourning that can sometimes seem appealing. The idea that I can stay here and not go down that road at all appears the better option. However, one comes to learn that the road is not actually optional. It must be walked. Attempting otherwise only delays the journey; and each day left unwalked increases the toll that is charged for passage.

And so I have walked the road. It is only recently that I have wondered where it leads. What is the goal? Where does it all end?
Does this road have a destination or is my status now permanently that of a nomad with no home - walking a treacherous road without end.

I have come to a settlement on this question of mine. Bad news first. The road of mourning does not end on this side of eternity. Ginny and I will not reach the end of our heartache. We will not arrive at “all better”. In truth, our loss is a permanent scar whose effects have only just begun.

But we do have a companion on this road who has traveled it himself. Who, alone, makes the road bearable.

And, although the journey does not end it does head toward something. There is due north. And the compass points to the love of Jesus Christ. The further traveled, the greater the understanding. Never attained, but closer still.

Thus, the river of grief flows to the same sea that all of life’s rivers flow towards. Even if one has never known pain, his is the same road as mine. All of life’s experiences- including Eliot- direct me to my home.

And I pray that you, being rooted and established in love, may have power, together with all the saints, to grasp how wide and long and high and deep is the love of Christ, and to know this love that surpasses knowledge
Ephesians 3

Now we see but a poor reflection as in a mirror; then we shall see face to face. Now I know in part; then I shall know fully, even as I am fully known.
I Corinthians 13