happy being trevy

  but probably not for the reason you’re thinking!  Or at least definitely not for the reason I’m typically found in a puddle of frustrated tears after attempting homework with him.     May I never forget that when he’s surrounded with the right people, the right tools and a commitment to let HIM define his limitations…the miracle of who he can grow into will induce sappy moments!   …danielle

    Check out Trevy’s (and Toby’s) mad dance and booty shake moves!     Made you smile didn’t he?     …danielle     ps.  Bet you can’t guess why his jammies are backwards! 

    The first Friday in June has been a favorite of our family’s since…     Well…     since we were first invited to Hasbro Children’s Hospital’s Dream Night at the (Roger Williams) Zoo.  Shortly after Trevy’s diagnosis.  Four years have gone by too fast!       You can read the history of Dream Night here .     For our family, it’s just such a beautiful treat.  An escape from the daily grind that is loving and caring for a child with catastrophic epilepsy.  While some stretches are less crisis filled than others…somehow it’s no less exhausting.     Or maybe I’m just a big baby?        Either way being invited to celebrate at the zoo with other families, exhausted (or big babies?) like us, is…     Well…     heart warming.     All three kids begged for face painting this year.  Evidently, Tobes has lived the past t...

    If you know anything about Trevy’s story …then you won’t be surprized to learn that Gifted Hands is on our family’s must watch list.  Although Dr. Carson is not an advocate for Infantile Spasms and Hemispherectomies…his work blazed an extraordinary trail.  Down which our family would eventually tread.              And you have no idea how excited I was seeing it nestled among the other newly added instant stream options on Netflix !     If you haven’t watched it and you have even a smithereen of interest…     I say go pop some corn.  And snuggle in.  After all, it’s summer tv season.  What else is there worth watching right now?!     …danielle

   

    A handful of little video clips I found on the kids iPods…     How they entertained themselves on our schlep to Boston Childrens…     Ever wonder what Trevy's voice sounds like when he says "poooooop"?     Bristel teaching Trevy how to boogie before church     What Trevy says and does with the iPod when nobody’s looking!     I helped Bri (my budding crafty girl) make this little clip but Trevy was toooooo funny in the background not to share!     …danielle

 

    I like to consider myself an eclectic homeschooler.      We have some structured learning.  Hence the passion for workboxes.  I’m addicted to anything that smacks of  Montessori .  I like to sprinkle in some Read Aloud-ing.  Cause really, is there any such thing as too much couch cuddling?     And of course there’s some un-schooling-ish…or kid imagined…things happening here on a daily basis as well.      For instance, I walked into the therapy/school room to find Bristel – who is ever trying to practice her learnin’ on her baby brother.  She was armed with the iPod Touch.  Trying like crazy to catch a clip of Trevy playing with his puzzle.  The trouble with Trevy is that he needs a lot of assistance to complete a task from start to finish.  She was getting a little frustrated.  So I stepped in to help her accomplish her goal – create a “documentary” to help give other pare...

  Holy Moly…this iPod touch is dangerously addictive!   I can’t stop taking video clips.  Which are inevitably too cute not to share with the whole wide world!  God help us, if they start limiting our digital airspace usage!        His “handsome” move is too much!     And that giggle. I mean.  For real.   :: wink ::     …danielle

  I caught Trevy rockin’ out with one of his fave Christmas gifts.  Please pardon my messy Therapy/School Room.  That’s what happens when it gets used.      :: smile ::        I love how he pats his chest when he sings “me”.   Also, how he turns his head away so he can keep chomping on the microphone.  Cheeky.  But smarty too.   I do think it’s super cool that Allison Cruz thinks he’s cute.  She doesn’t just have a smashing voice…but super good taste too.      …danielle

    **warning – content may be offensive to Tebow haters** **double warning – this post has absolutely nothing whatsoever to do with catastrophic epilepsy. Unless of course, you count all the “Tebowing” we’ve done over Trevy.  All our kids actually . Or the fact that Trevy looks stinkin’ cute in the prayer warrior pose **         My men-folk love sports.  Even Trevy.  In fact, he’s been wearing his Special Olympics medal around the house lately.  Maybe hinting that he’s ready for our Winter Season to get on with it already!  Bristel’s the only hold out.  In fact, she told me the other day that she’s going to marry for love.  Because if he loves her…he won’t watch sports.  lol  I didn’t have the heart to tell her…if she loves him…she’ll learn to enjoy them.        Toby is an all around athlete.  He’s not a super star at any one sport…but solid in all of them.  He h...

    he’s got some pipes :)     If that isn’t therapy I don’t know what is!   …danielle

I have Survivor's Guilt.  Okay? There I said it.  Finally.  Lord knows I've thought it for as long as I can remember.  Before radical brain surgery even.   You cannot have a child like Trevor.  Who shares a diagnosis with children like some of yours.  Children whose seizure (and/or other diagnosis) scars are more easily visible.  While he continues to bloom.  No.  You cannot have a child like Trevor and not have it tear at your heart when others suffer more.  All the while sowing the seeds of Survivor's Guilt in your soul.   Even if you do see seizures post surgery. That Guilt (or is it empathy?) has muffled my desire to share Trevor's on-going seizure activity openly.  Because I feel terrible.  Awful.  Freaking guilty!  I know the war that many of you wage on a daily basis is much more bloody than ours.  And I know that Trevor is a miracle to many IS families.    But. ...

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A cute little clip of Trevy showing off his new verbal skills! I keep reminding myself that 8 months ago...he had no speech. No reception. No expression. Nodda . Such a miracle! And trust me...he'll get your smile on! Plus, a bonus vid! Cause Trevy in Time Out is too cute not to share. ::smile:: This clip is actually fairly mild compared to his normal TO shananigans. But still cute. You'll see....

I'd forgotten all about it. The picture of Skinny Me hanging on the fridge. It was an image we used to "market" our mission work. Postcard sized. Full color. Random Tanzanian facts on the back. Cute little family of three...at the time...gracing the front. Jonathan looked tall and tan. I still had sexy hair skimming my skinny sexy neck. Toby's little Charlie Brown head was kissalicious. I don't know why we've kept it posted on the fridge for so long. That was a lifetime ago. Before Seizures. Now we're living the After Seizures life. I guess we left it up for nostalia's sake maybe? I've been trying really hard to shed some of this chub that has slowly been expanding my hips. And thighs. And arms. And abs. And...well...I think it's safe to say that my chub has declared war and invaded every inch of me! I also think it's safe to say that I'm obviously a stress eater! So I was passing by the fridge the other day when She ...

Photo and video editing at www.OneTrueMedia.com

Photo and video editing at www.OneTrueMedia.com

He's eligible. ::smile:: I him dressed cute (in mad sale Children's Place finds). And brought him with for the meeting. I feel deeply that it's important to see him. In real life...as Bristel would say. Because he's such a different kid in person than he is on paper. And he didn't disappoint! I couldn't have been more proud! I'm such a sap. My eyes misted more than once watching him motor around the room. Every day I'm more convinced that I'll never get over it. What he's lived through and survive- ing . He is a miracle. And sitting in the (toy storage?) room watching him play and flirt and ooze Trevy-ness...my heart was overwhelmed. He is my miracle. I was SO thankful to have everyone from Trevy's EI team there. In support. And because they love him! Each of these beautiful, amazing women have been Placed in our lives. Of that I am sure. And over the course of these past 2 1/2 years I have grown very connected with them. ...

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