Skip to main content

scaredy cat


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!

Comments

Jarret said…
How is the weaning going? Are we still seizure free?
Jenn
Jarret said…
By the way....how did you find Cody's site? Do you know them or just come across them on the web?
Jenn
Jonathan said…
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

Popular posts from this blog

a different kind of muscle — guardianship process

  To all the parents who have walked through the guardianship process — my heart is with you. Our paperwork is prepped and ready to submit this week. He turns 18 on April 3rd. I've been thinking about this for a year now, but only just mustered the energy to move forward — the loom of his birthday my propellant. Overwhelm has paralyzing effect. I'm struggling to recall the last time I didn't feel overwhelmed. It struck me how all these years of walking through disability beside Trevor should have made me stronger and yet... I suppose it's a different kind of muscle being developed.

No, I don’t know him personally

  I’ve had several emails today asking if I know Mike W. of Marissa’s Bunny personally.    Trevy’s blog was linked on her site.  Although it’s not now.     I’ve posted here and there at his request.  Because…well…we’re a community.  Us IS families.  And Marissa is wicked cute.  Her daddy has a way with words.  Also who wouldn’t want the world to know about an iPad give-away?    But aside from that…I know about as much as you do.    We’ve never met in person.    Our only communication has been cyber.    I’m a ginormous sap and as such would love to believe that all is right.  That the sweet, beautiful families who were promised iPads will be getting them tonight.  Tomorrow at the latest.  That no one has been lied to.  That the personal thank you for your generosity email I sent him on behalf of other IS families I’ve grown to love and was thrilled to learn w...

the great answer hunt in the land of Infantile Spasms

If I've said it once... I've thought it a million times more. How it's like the more I research...and discover...about IS. The more blurry everything becomes. For every answer found. A dozen questions are unearthed. Remember our whole ARX saga ? Yeah...that threw me for a loop. So much so...that I never went on to post the end of the story. Thus far... See...the unbelievable in the world of genes happened. Because this is IS-ville after all. After Dr. Genes sampled Trevy's ARX gene on a whim...a whim which revealed an unkown (meaning the first time this specific change was found) mild mutation...she proceeded to send Toby's blood off to mad scientist central. With assurances that this was totally unnecessary . She was convinced that Trevor's ARX mutation was the underlying cause of his Infantile Spasms. And that Typical Toby...would prove to be just that. Typical...at least in all areas mutate-able. And yet...Toby's ARX blood sample revealed THE SAME MIL...