Today starts the weaning process - which is very intense for me. I can't help but roll my eyes at myself and how I went kicking & screaming into ACTH land - only to have it work w/o major side effects! Now I don't want to leave. It's like a security blanket - and I don't want to lose it!
Trevor's spasms slowed in intensity almost immediately. It was like we watched them die. And now that he's coming off the meds I'm afraid they didn't die after all. That they're just in hiding - waiting for Trevor's little mind to be vulnerable again.
And it's very scary.
And I've seen scary. I've lived scary! I've held my feverish babies sick with malaria 3x each - that WAS scary. I've shared the love of Jesus with Muslim children while group of militant looking men sat outside listening - that was hair-raising scary. I've prayed for safety as the only thing between the thieves & our family were the bars on the windows, a scrawny guard & a lick-happy dog - scary! I've been through some scary stuff.
And yet somehow this feels heavier. Bigger. Way bigger than me.
A few days into our IS drama my dad (those of you who know him understand that he's very cerebral in his speaking so I've taken creative liberties while keeping the content in place) said to me, "It's scary when it comes down to just you & God, huh?"
How right he was...
So if you're thinking about us today - pray with us that we'll have courage & faith. Because this is huge - and scary!
3 comments:
How is the weaning going? Are we still seizure free?
Jenn
By the way....how did you find Cody's site? Do you know them or just come across them on the web?
Jenn
Hey Jenn,
We're celebrating still...no more yucky seizures!
He's been a bit cranky but otherwise doing very well...so we're happy!
I found Cody's site through a support group. She's done a fab job with all the info out there!
...danielle
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