Skip to main content

better because

I interrupted Trevor's morning ABA session to administer his meds.



It's 9:30 and he's already had three seizures this morning. Two in the presence of his teacher. It's obvious she is profoundly moved each time she sees one, no matter how mild. 



There has been much talk by him about his imaginary friends this morning: Shimmer and Shine. Evidently, these are some new Disney characters?



As he swallowed his med-laced-applesauce, he said, "Shimmer and Shine have to drink their smoothies today."



"Yep," I replied, "Even imaginary friends needs their healthy breakfast."



He was quiet a moment.



"Shimmer and Shine don't feel sick all the time."



He didn't add the words "like me" but they were there. Hanging in the air.



His therapist caught my eye and we shared a moment. I'm feeling emotional today anyway. It's a miracle I held it together when I saw her eyes wet too. Selfishly, there is a part of me that draws comfort having someone outside of our family see and feel with me.



If I must find a silver lining, it is this: I am persuaded his is infecting her heart with true feeling and she will be a better therapist and person from having lived this time beside him and our family.

Comments

Post a Comment

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.
1 comment
Read more

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...
23 comments
Read more

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...
14 comments
Read more