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...