This was Cody at age 6 months of age - his first EEG.  That was the week he was diagnosed with infantile spasms and we stayed in the hospital in Portland for a week.  Now tomorrow - we are looking down the barrell of another week long hospital stay.  And his umpteenth EEG.  I lost count, but he's had at least 20 of them.  And they've gotten us virtually nowhere.  2.5 years after this photo was taken, we are still helpless.  Still at the mercy of his seizures.  Still glueing electrodes to his head.  Still wondering why.  Still begging the Dr's for help...for anything.  And this hospital stay, in a way, is a turning point.  Either he can have brain surgery or not.  This stay will decide that question.  Pretty crazy when the "best" news you could hope for is, "yes....we CAN cut your child's head open with a bone saw and scoop part of his brain out!  And then - there a 50% chance this will help his seizures!  But be careful cuz he could lose some bodily function and personality.  And even IF it does help his seizures, they won't ever go away.  He'll always have them.  This just might reduce them some." 

Oh gosh, if someone had told me back when the above photo was taken that we'd be "here" --- yikes.  I remember calling my friend Kim from the hospital 2.5 years ago when we learned about Cody's prognosis and I simply screamed over and over, "my life is over.  my life is over.  my life is over."  I literally couldn't fathom living with the news I'd just received.  I knew it would kill me.  I couldn't watch seizures take over my son's body indefinitely.  And I was right.  My life was over.  The life I knew.  The life I expected.  The life I wanted.  In it's place, a new life has creeped in.  As I've said in my last posts, a "new normal."  The life we had before seizures - the life with a normal little baby and dreams for his future - that life is over.  Now our dreams consist of a good night's sleep.  A day where he has a few seizures instead of 50.  One of our biggest dreams is to hear him utter a word one day.  Just one word.  I'd truly settle for that.  Just one.  To hear the tone of his voice.  The inflection.  Somehow we've survived.  And off we go to the hospital yet again. 

I spent the weekend making lists and packing.  Packing his favorite musical cube with the jungle animals on it - the one that sings "I'm a gorilla, big brown and strong, pound my hairy chest, while I sing this song!"  He LOVES it.  Packing his musical teddy bear that has not missed a hospital stay yet.  Packing his favorite granola bars - his vibrating teethers - all things that are special to him.  We're bringing a high chair, a playpen, an exersaucer - anything that will allow him a moment out of the bed but keep him within inches of the bed so the camera will still catch him if he has a seizure.  We are PROS at the EEG experience!  The nurses have marvelled at my creativity in the past!  I've rented movies for Don and I...I have labels for all our food and my breast milk containers...I have summarys of his medical history so we don't have to barf it up all over again.  The only thing that's new - is I've never done this with a nursing baby!  That should be interesting.  To say the least.

This weekend has been very reflective for me.  For some reason, probably because going to the hospital it always sobering, I've been looking back on our lives and taking stock.  And I can tell you honestly that what has sustained us is 3 things.  The love of God.  Our dear generous friends.  And our unending, undying, bottomless love for our son Cody.  He has raised us, not the other way around.  He had 40 seizures today.  40!!!!  And not all tiny ones - some were huge.  And as exhausting as it is for us, imagine how it is for him!  I am humbled to be his mom.  And I will spend all the rest of the days of my life in humility that I get to have him by my side. 

Here's my current favorite poem - that sums it up way better than I can:

When you look at me,

You may measure me

by my awareness

by my response

by my age

by my development

and you may shake your head

and find me lacking.

But for me, you are measuring

with the wrong cup.

For I have one posession

which brims and overflows

beyond all others.

I have my parents love.

This cup they give me holds also their

agony and helplessness

waiting and hoping

tears and pain

loneliness and fear

but in the end,

all these are swallowed up

in the depth of their love

which now, in each same moment,

both lets me go

and will never let me go.

so measure me if you must....

but measure me with MY cup,

and you will find me

FULL.

I will keep you updated on the hospital computer - I will be posting prayer requests, news, etc. when I take breaks from the room. 

with all our love, Shawna