happy being trevy

  A week ago yesterday Trevor was wheeled into the OR for the first time since his hemispherectomy.   Talk about PTSD.    That’s whole ‘nother post.  Except to say that the nurse who patronizingly patted my shoulder and told me to “hold it together, mom” just about got an imprint of my wedding ring on her kisser. I was definitely slugging her in my head.   Trevor was NOT a fan of the whole idea. We’ve talked to him about his brain surgery because he’s seen pictures and we could tell he was curious. We have always been open with our children. Maybe we’re too open? Anyway…Trevor over heard that he was having surgery and needed comforting that it wasn’t on his brain again.  We assured him it wasn’t.   Still, he adamantly perseverated, “no surgery on my nipples !”  He meant tonsils.   Sometimes I *heart* Speech Delay-isms.   Dr. Neuro has mentioned a tonsil & adenoidectomy for years now.  She felt it could help w...

  The past two years have been a doozy.   September 2012 Trevor had his first dizzy-spell-chased-by-a-single-vomit episode.  When you have a child with catastrophic epilepsy it’s easy to blame seizures for everything.  There’s this doctor saying that goes – when you hear hooves look for horses not zebras.  I have the zebra child so this doesn’t ring quite as true for me.  I know this.  So I try really hard not to fall into that trap.  Which is why the first time it happened I decided to convince myself it was a tummy bug.  When he had another episode a couple weeks later I took him to the pediatrician.   “It’s that time of year,” they said.   By December I knew something was desperately wrong.  He continued to have these intermittent weird episodes which involved loss of balance, speech slurring, eyes bulging and finally a single vomit followed by intense drowsiness.  Beyond the dizzy spells he was having uncountab...

  His sister is SO good to him. She plays outside in the cold snow with him happily. Pushes him on the sled never complaining that she doesn't get a turn to be in the sled and is doing all the work.  While he follows behind like a little puppy.  Soaking in the attention and fun. And he repays her by throwing snow in her face not once...but twice.   Sigh. These are the things that break my heart.   My heart hurts that she runs in the house crying. But I don't blame her for being so mad and hurt.  I’m hurt and mad too.   And my heart breaks that I don't think he really meant to be mean.  But still...it was. And it's not okay. I made him apologize but he doesn't seem to really feel bad. His cluelessness is both heartbreaking and disturbing.   And I don't know that he'll ever have the impulse control to resist.   And how will he ever have any true friends. We have so many beautiful moments.  We really do.   But...

    I saw Trevor sneak up the stairs where he went into his room and closed the door.   I waited about 20 seconds before calling his name.   He didn't answer.   I called again.   Still no answer.   So I went up to check and discover him with my teacher box which holds assorted highlighters, pens and pencils.   He jumps to shove something in and closes it.   I say, "Hand it over, Punk Face".   He says, "I LIKE PINK!"   And sure enough...he now has a pink highlighter stripe running along his bedroom wall.   …danielle

  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

  I (occasionally) *heart* Speech Delay Like when Trevy calls his high tops high heels .   *****   Bristel and I had some alone time in the car after dropping Tobin off at his engineering class. The conversation inevitably went to romance. Because clearly that's what 8 year old girls think about.   Bristel randomly broke the silence with a sigh: Sometimes I think I may never find a husband. Me: Well, honey, it's better to wait for the right guy rather than settle for the wrong one. Bristel: That's a good point. (pause and then giggle) Daddy looked so silly in those circle glasses he used to wear! Did you think he looked silly even though you married him? Me: They were pretty silly! Buuuuuuut...your dad made me laugh. So that balanced that out. Bristel: I have really high expectations, I think. Me after choking on the fact that she's EIGHT: Well, what are your top five expectations? Bristel: He has to love Trevor. He has to love God. He has to love me. And...

  Our house has been VERY Purple the other morning. Trevy was having a meltdown after meltdown over a variety of things kinda day. Mostly related to communication frustration. Which of course is related to his Purple. He's frustrated when we don't understand him. We're frustrated when he doesn't understand us. Lots of frustration round here, ya’ll.     I'm proud of Jonathan and I. We managed to keep our cools...which is very difficult when you're dealing with Meltdown Trevy. The only kid that got yelled at isn't Purple Boy. I won’t mention names but we only have two boys.     In the midst of Meltdown Mania we also had a Miracle Moment too.   Trevy came to the kitchen gate and in his own language asked for cereal and milk in the living room. I informed him he could have cereal but NOT milk in the living room. Which initiated a mini tantrum.   Then he said VERY clearly, Bristel HAVE milk ! While pointing towards the living room. Making it clea...