happy being trevy

Trevor noticed my wet cheeks as I was scrolling through my FB memories this morning. Amongst others there were reminders that 8 years ago today he was in for phase one of his radical brain surgery . I'm not sure how I found the energy to post so frequently though I do remember it being a life-line while we were waiting. Though we were alone, just Jonathan and myself in the waiting room, I knew friends and family were with us in spirit and virtually. Reading those posts was hitting my heart particularly hard this year. Probably because we're dealing with an epilepsy relapse. Trevor noticed and asked why I was crying. I believe in honest answers to honest questions and so I told him that I was thinking about his brain surgery when he was a baby. He asked why his surgery made me sad. I tried to explain that I wasn't all sad, really, but I was remembering how nervous I was during his surgery. Of course he then wanted to know why I was so nervous. ...

I wish for every mother (or father) who finds herself sitting through countless, often discouraging, therapy hours beside her disabled child to have at least one therapist whose face lights up with joy when he/she sees that child. I wish for her heart to hear another person's voice exclaiming that her child is amazing and to have that voice dripping with acknowledgement of how far he's come and how amazingly brave and special he is.  We have been blessed with a handful of therapists over the years that cared for Trevor deeply. Some still keep in touch. Those blessed few have been such a gift.  This morning, Trevor's outpatient OT came to pull my nose out of my Kindle so I could "come see how amazing he is!" Her face was glowing; her countenance speaking to my soul that she knows how hard he fights for every gain.  She'd asked him to build a crash stack out of large foam blocks. Her idea was to have him scooter zoom into the stack and knock i...

Bristel offered to tuck Trevy into bed tonight. Her eyes were shining when she came back downstairs and declared him the cutest kid ever. She'd told him that sometimes she comes and checks on him while he's sleeping. That she even gives him a kiss on the cheek, but he doesn't ever wake to know it. He was very confused why she would "look at" him while he was sleeping, so she confided that she worries about him sometimes. As she was leaving the room he said, "Bristel, you no look me when I sleep tonight."  She asked him, "Why, Buddy?" "Because I be okay," he reassured her. And that was when, she says, her heart melted completely.

My super power is self-doubt and second guessing. It can eat me for breakfast if I'm not careful. Which is why I make an effort to fill my heart with Truth and lovely things to build immunity against wallowing in the sludge of my own head. Even still...sometimes my flesh is weak. Today was a self-doubt day. I worried  about bills. I worried about college for kids and how to fund it. I worried about bills. I worried about this and about that. I worried about Trevor. I worried about my choice to home educate him and was it the best or am I failing him. He has a way of always proving me wrong exactly when I need it. This is a picture of today's copywork... And this is a picture from the beginning of the year... Today's was incredibly beautiful and shows tangible improvement from the beginning of the year. It made me a big sap ball. He LOVES making me sappy. Which only intensifies the sap-fest. I mean, seriously, how can I n...

Yesterday,  a FB girlfriend posted a beautiful, spontaneous picture of her child playing and asked if anyone else ever feels their heart squeeze with the blessing and gift of being their child's mother.  Her question wiggled its way right into my mommy marrow. It's oh so easy to get caught up in the mundane and the difficult. To let the exhaustion filter out the beauty and in the cranky. She reminded me that it's essential to really let my heart marinate in the beautiful, blessed moments.  Today, I had that moment with Trevy while working on his All About Reading lesson. He was peaceful and joyous in the fresh air and sunshine. THIS is what school should look like for him, I thought. And my heart squeezed with the blessing of my gift. I had that moment with his big sister, when she leaned into me while reading Little Pilgrim's Progress aloud for our morning meeting. I love the feels of her cuddles. She's been b...

  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...

    4 years ago today ...we'd already hugged and kissed him goodbye by now. I'd run my fingers through his curls one last time. God, I miss those curls. And kissed every inch of his sweet face. Inside my heart was screaming "NOOOOOOO!". There was an intense soul battle raging. One part of me desperate to snatch him off that stupid gurney and run away to the furthest reaches on the earth. The other part knowing we were here to rescue him. Knowing we HAD to be here. My love for him was the gravity force that held me down that day.     4 years ago today ...we survived the longest, the most emotionally draining 13 hours of our lives. No day before could compare and no day since has yet to. We spent that day in a waiting room at Detroit Childrens. Feeling so very alone. So far from home. We wanted to wrap our arms around Toby and Bristel but were thankful we had left them behind. Because this was too much for us. It would certainly be too much for them. We watched part...

    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

    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've been focusing a lot on emotions with Trevy.     Every day I randomly ask him to tell me something about his day that made him happy, sad, scared, etc.   So tonight I was asking him "does so-and-so make you happy?"   He loved the game and said, "Mommy! Mommy!" which I knew meant I should ask does Mommy make you happy. So I did. He practically jumped up and down while he screamed YESSSSS!     It was really sweet.     Later I decided to turn the tables on him and asked instead...     Trevy, do you know how YOU make MOMMY feel?     He paused a minute and then whispered uncertainly, "Tired?"   I'm not sure if he knew why Mommy laughed so hard and hugged him so tight and smothered him up in so many smooches. But I'm pretty sure by time I was through he knew that he also makes me HAPPY!     …danielle

    (You can’t get more RI than that – island honey for him; Dunkin Dark for me!)   Kinda makes ya believe in God is my pet phrase whenever something really cool happens. Like the time we were in the hospital with Trevy right next door to a Burundian refugee family. Fresh off the plane from Tanzania (where the refugee camp was located) and speaking zero English but lots of Swahili. Their daughter was very sick and the nurses were frustrated by the language barrier vs. the medical needs. It was cool (in that kinda makes you believe in God sorta way) watching their jaws drop when we told them we'd be happy to translate. I guess we don't look like the average Swahili speaker.   Then there was the time Toby's coach donated enough travel points to not only fly us to Detroit for our (nightmare miracle) surgical consult but also put us up in a swanky hotel too! Sitting in the VIP room of the Marriott in downtown Detroit totally gave us that "kinda makes ya believe i...

    We survived another MRI.     It doesn’t get easier.  For me, I mean.  Trevy was a trooper getting his IV in.  He was a trooper about not eating.  He was a trooper about having an hour delay.     He was a trooper right up until they wheeled us into the MRI room.  Once he was on “the table” his survival instinct must have clicked…because suddenly trooper was out the window.  He was clawing me and screaming “NOOOOOO!” and “ALL DONE!”  I bear hugged him hard.  He managed to rip my glasses off my face and tear my heart in two before the Proprofol did its thing.     I wish I were a better writer so I could do justice the emotional electricity in those moments.  I wonder if the staff feels it too.  Because to me it’s so tangible I swear you can taste it.  And if nothing else, feel it.  The heartache.  The hope.  The love.  The faith.  The stress.  The stre...

    His last “ episode ” was two Mondays ago.  That particular episode lasted much longer than the others and had me sending frantic emails to Nurse Neuro-Surge.  Maybe it’s the feeling deep-down that believes it’s pressure that had me freaking out?  All I know is that I was ready to race to the ER.  And in case you didn’t know…I LOATHE the ER.  I would only ever go there if I were seriously worried.  Which I was.     I decided to give it until after his nap.  If he woke up from his nap and was still off …we were going in.     Wouldn’t you know…     he woke up from his nap in an AMAZING mood!     Happy..     And SO clear headed.     The Trevy I know and love.     We’ve been enjoying his sweet-silly-happy cocktail mood ever since!     Stretches like this make my heart soar with joy!!!  Soar, I tell you!     So how could I...

    15     That’s the number of episodes he’s had since September.     The first two times it happened we just assumed it was a tummy bug.  I mean kids throw up all the time.  Yeah, it was weird that he only spilled once.  And also that he never had a fever or any other tummy buggy symptoms.  But not everything is a zebra , you know.     Or at least that’s what I told myself for months.     Stop reading into this has been my on going inner heart-alogue.     Then around December…I could feel the worry rising inside.     I mean, healthy people don’t vomit out of the blue a couple times a month.  He had several episodes that were particularly scary.  There was that Sunday when Miss. Kerrie, who has been our church helper for years now, wanted me to take him home with her because the episode he had was that intense.  She was worried enough to warrant mom being the...

    Praying with Trevy has always been part of our nightly routine.     Except when sick, Trevy is a sweet, sappy, cuddle bug at bedtime.  Even when dripping with exhaustion, there is something really special about snuggling up, reading a book, singing a song and praying.  No matter how cranky I am, it always gets me in the heart.  It’s one of the most peaceful moments in my day.    I do naps and Daddy does night nights.      Now that Trevy is understanding so much…     I’ve had this heart tug to make prayer time mean more for him.      Once upon a time, I’d read a sweet post that shared a prayer over their children. Moving from head down to toes. It included words like “heart of a warrior – feet that run to Jesus”.   I thought I’d read it over at Sand in the Gears …one of my favorite reads which I’m shamelessly plugging. In fact, I emailed the author so convinced was I. Tony ...

    Trevor has had very little time totally seizure free post surgery.     Which does NOT mean the surgery is a failure.  Or that we have any regrets.     In fact, that couldn’t be further from the truth!!!!  The surgery has helped us control his seizures more effectively and has given him a chance to make developmental progress!  I have NO doubt that I never would have heard his sweet voice meaningfully say words if we hadn’t gone the greatest lengths to rescue him from the Seizure Monster.  And he’s learning to say some very sweet (and sometimes not so sweet) words!     I can hear him through the school room door.  His ABA therapist is running a social questions lesson and she asked him who his mommy is.     Den-elle , he said.     I wuv you, Den-elle …he repeated.     Sweet sweet words!!!!      But.         We’re in a seizure c...

        Trevy is fascinated by his MRI. I have a laminated picture in my wallet because I like to randomly remind myself of his journey.  It’s great for those moments I positively want to throttle him!   He saw it earlier while I was rifling through my wallet at the market. So I told him about his big scar. And how the doctors had to remove the yucky, broken tissue. I told him that he's a miracle. I was waxing quite eloquent, I think. He was listening intently and then said,   And my nose?   Sure enough, if you look at his brain the right way...it looks like a face with a nose!     …danielle