Skip to main content

what you can’t see, CAN hurt you!

 

 

As a result of Trevor's brain surgery, he lost vision in the right peripheral field of both eyes.  It’s called Hemianopsia and Wiki can tell you all about it.

 

 

He navigates so well that it's what I call a "hidden or sneaky disability".

 

 

 

Until he runs smack into a pole at summer camp and gets a ginormous goose egg over his right eye!

 


Poor baby, his aide said he hardly cried at the time or on the way home.  The accident happened right before go home time.  I guess he saved all his tears up for me.  Because the minute he opened the door he just melted into a sobbing puddle. He was exhausted and I'm sure, frustrated.

 

It's not fair when things that you DON’T EVEN SEE smack you in the noggin'!

 

But the good news is…he received a 4 week partial camp scholarship this summer.  That means he’ll have plenty of time to learn his way AROUND all the poles!

 

…danielle

Comments

Anonymous said…
Oh my goodness... I know how he feel with these incidents. I lost my complete left peripheral. One thing I speak about to groups is whether it is better to have invisible illnesses or have them displayed for people to notice. Though sight loss is not an "illness" it can be just as trying. Tell him next time to scold that pole for jumping out into his way!

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...