happy being trevy

    I caught him…     bummin’ surf therapy off random strangers!     …danielle

    Trevy is at camp this summer for a couple weeks. He attended this camp last year too. It's an inclusive camp so there are special kiddos and typical kiddos. Trevy attends with his aide and has a lot of fun.   One of the boys from last year remembers him and yesterday said,   Hey, Trevor, knock knock...   Trevy knows how to play this one and responded, Who's there?   The boy shouted, OH MY GOSH...HE'S TALKING!!!!   I've been giggling about that one since his camp aide shared it with me this morning!       … danielle

  I’ve been silent on this subject for a long time now.  Too long.   During the silence Questcor has gathered their arrogant loins about them and is once again seeking to pillage the most vulnerable.  In the words of my friend and fellow Infantile Spasms advocate, Mike,   “the IS Community needs to band together and insure that our kids are protected.  Screw me once shame on you.....Screw me twice shame on me...”   While our open letter is aimed primarily at our community, the Infantile Spasms Community, we fully appreciate that the impact reaches further.  You have our complete and full permission to share at will with those whom you feel this will impact.  Together , we can make a difference!   **********   Questcor, the company that acquired the rights to Acthar (ACTH) in 2001 and jacked up the price of this Infantile Spasms treatment, is at it again.  They have acquired the U.S. rights to another IS treatment – ...

    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

    Toby made the baseball AllStar team this year.     Actually, he’s been on an AllStar team every year since he was 8.  That first year we were practically forced to let him join.  Up to that point we had not mentioned to anyone in our community that we had a child with catastrophic epilepsy.  Though Trevy was at most of the games, because his seizures are not grand mal most people never even knew he was seizing through whole games.  No one but our family.  It was heart-breaking but we were committed to trying to live as “normally” as possible.  We knew there would be times when loving Trevy would interfere with normal, but baseball was something that Toby passionately wanted.  So we did the regular season.  But there was NO way we were going to do post season play.  That was where we had to draw our special needs family line.  The coach persisted, though.  He practically begged us until we finally had to ...

    She puts on such a brave face.     Such a sweet, sensitive heart she has.  Neither of my boys seem to posses that thing that makes you sensitive of others.  But she has it in spades.  She’s always thinking of others.  Always ready to cuddle.  To nurture.  To love.     But I knew.  I knew behind her big blue eyes and dimpled smile hid a broken heart.  But she was thinking of me and trying desperately not to make me sad.  She hates to see me sad.  And so she smiled even though I had failed her big time.  I felt the guilt and grief and sadness climb up my throat until I had to catch her and make her see how sorry I was.  Apologize on my knees.  Until she knew to her toes that I meant it deeply.  Until any possible root of bitterness could be plucked from the soil of her tender heart.  To God, I don’t want her to grow bitter with me.  With him.      H...

    I volunteered this weekend to help with the school’s PTO yard sale.     Hooray, me!     I don’t get to do this stuff often.  Between homeschooling (which is intensive ) and parenting Trevor (double intensive ) I rarely get the chance to invest in electives.      But it so happened that this time the stars lined up.  Meaning, I could actually swing it.  I like to swing it when I can.  It makes me feel less affected and more normal.  Or so I tell myself.     Once upon a time, I had this dream.  My heart dreamed that by the time Trevor was ready for Kindergarten he would seamlessly blend in with his peers.  All those hours of therapy would pay off big time.  Sure, he’d still have an IEP.  He’d always need an IEP.  But no one would have to know.  It could be our little secret.     He’d blend.     As far as he’s come.  As amazing as he...