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dreaming of a not so exhausting christmas

12/22/07

Yesterday was incredibly exhausting and by the time Dr. H called I was too tired (and cranky) to even try to post. (but thanks Grams for making me feel guilty! :O) And sorry to all the friends who may have checked in hopes of knowing where we're at in this whole mess...

The VEEG (video electroencephalogram) was uneventful - you slept which was essential to a proper read. And I've gotta say - you make EEG-garb look darn tootin' cute! Daddy & I took turns staring at that stupid machine until we had migraines! I have a feeling that before all is said & done we'll be pros at reading those scribbles!

Dr. H didn't have a chance to call until late last night - and the news wasn't great. It wasn't as yucky as it could have been - but it wasn't great. She said there was no seizure activity during your awake cycle - which is improvement. But during your sleep cycle there were electrical charges coming from your left temporal lobe - and she is scheduling more tests - happy happy joy joy. But...Daddy & I are just SO thankful that we have access to this level of health care. We've seen what's out there in the world - and we have learned to appreciate America!

And the better news is - if we can find the source - we have better hope of controlling your seizures! Which means less developmental delays for you!

Even though we were prepared to hear bad news - it still knocked the wind out of us. Again. It's like our life is under going major reconstruction - and just when we find our footing - the foundations start rocking again.

We still have so many unanswered questions. So many fears. Worries. Tearful moments.

But I've been thinking a lot lately. Too much - I have the massive headaches to prove it. But, Trevy, I am convinced a few things. I am convinced that you are not here by mistake! After all the drama we went through in Tanzania...and coming home...and you still arrived! YOU ARE NOT A MISTAKE! And I believe that your life has an amazing purpose! God brought you here & gave you to us for a reason! You're ours - and we love you! And I know that even if your life here isn't what I had hoped for - dreamed of. I KNOW that one day you'll be restored - perfect - dancing in my arms before the Throne.

I'm trying to shika (Swahili = hold on to) that promise. That joy. That surrender of all the me - and letting you go to the all that HE has for you! I'm trying to choose joy.

And praying for a not so exhausted, Christmas!

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