sometimes we sit in the car

It's not always about having a seizure.

Sometimes the impact of his disability looks like sitting in the car while everyone else is touring a museum, because he just couldn't anymore.

And I'm trying to push the trapped-by-disability-frustration down, as I remind myself, he just finished sitting peacefully through that 20-minute lecture at Touro Synagogue; a reflection of growth. I force my heart towards gratitude that at least I was given that gift. That lecture was the most beautiful I've ever heard. It was like a livingbook come to life before my eyes. And I can understand more deeply the beauty of historical story-telling versus the stale textbook.

I would love to be touring the next museum too. I know he would have loved it. The magnificent art draws him in. But his body and mind refused would not cooperate. We made a hasty exit to the car before the meltdown could form in its fullness. Now he's content with a snack and his DS. It could be worse.

So, maybe next year we'll get to finally see the Chateau Sur Mer. This year, we sit in the car because that's what he needs. Sigh.

Comments

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...

happy being trevy

Search This Blog