Skip to main content

when I'm 18

Peaceful morning swinging often lures the philosophical from Trevor. Earlier this week he was laying back, arms behind his head, while I gently pushed and chatted with him. Somehow as were talking the number 18 was mentioned.


He sighed, "I'm just thinking about me at 18."


"Oh? And what are you thinking?"


"Drive a car."


He craned his head to make eye contact and observed my facial expression, which was probably a mix of sad surprise.


He turned back around and continued, "Yeah, I'd love to drive a car when I'm 18."


At that precise moment we heard a rumble in the sky above.


After a pause he said, "Or an airplane."


What am I going to do with this boy? First a car? Now planes! It's the sweetest thing that he's grown very aware of his "special needs". In fact, if he likes a person, the first thing he wants to share with them is "my special needs". When we meet random strangers in our daily ventures and someone is especially kind, he'll often whisper to me, "I think they must know special needs". One day last week he found my Infantile Spasms Awareness shirt in the bathroom and wore it all day. I'm sure I'm only aware of a fraction of his feelings about his "special needs".


I swear he's a little bit magic. There is untold beauty in the way he embraces his diagnosis but doesn't let it become a barrier to his dreams.


Now, if he could just teach his mom how to do the same!

Comments

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...