happy being trevy

"Go with Sorrow and Suffering, and if you cannot welcome them now, when you come to the difficult places where you cannot manage alone, put your hands in theirs confidently and they will take you exactly where I want you to go."   - Hind's Feet on High Places There is a part of my heart that loathes sharing the bitter moments. There is another part which believes it to be deeply important. Sleep should bring peace and rest and relief from the worries of life. Sleep is said to be healing. Yet, for Trevor sleep has grown to be a time of turmoil and the very fight for survival. He didn't wake this morning healed and refreshed. Nor did I. I woke discouraged.  Because it is discouraging for rescue meds to gnaw the heels of nearly a month of seizure freedom. It is discouraging when your son, with his precious, child-like mind expresses that he doesn't understand why he has seizures and wishes he knew why. It is discouraging to watch him struggle...

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. ...

Trevor was having a particularly rough morning. He'd logged two seizures already and was hyper focusing on how to get money to buy new Wii games. It was making him miserable and I had him lay down on the couch until he was ready to move on to lessons. He usually helps me with laundry as part of his daily routine, but he was in no position to be helpful this morning. Toby was needing a mental break from his studies and offered to sit with his brother while I ran to the basement to finish the load I was working on.  When I came back upstairs I found Tobin holding Trevor in his arms telling him how much he loves him. It wasn't just words. Evident from his tone of voice and his body language was the passion flowing form him. As if he were trying to make sure Trevor never forgets his words. As if he were trying to sink those words down into his brother's marrow. It was incredibly, movingly sweet.  This has been a year of soul growth for Tobin. The borders ...

I was nearing the end of Trevor's nightly massage when he took my breath away. He'd already stolen my heart with sharing his desire to meet Robert Louis Stevenson in Heaven just so he can tell him that he writes the best poems and how he wished the Apostle Paul were alive right now to baptize him (he watched his newest SuperBook installment today). But I wasn't prepared for what he shared next. Mom, probably me tell you this already three times. (he's never, but he does love quantifying things) But when I was, probably, seven, I had a dream that me was in a building and me went in all the rooms. Me opened all the doors. And you and daddy were trying to find me. I gasped. I couldn't help myself. Remember that dream I had a few nights ago? The one where he'd let go of my hand and I went racing through a building looking for him? I'd shared my dream with you guys but not with him. And so I gasped.  He noticed my glistening eyes and is famous...

Trevor's seizures are not noisy or (externally) violent. In fact, aside from the times he might give a little gasp right at the beginning, they are eerily silent. Often, the only sound to be heard is us, murmured attempts comforting him. Or maybe we're trying to comfort ourselves. Since his seizures have aggressively reemerged, not a Sunday has gone by without their invasion. One day I'll find adequate words to wrap around how wrenching it is to have my voice lifted in worship during a favorite hymn, only to turn around and discover he's silently seizing. Sitting small and alone and seizing in the pew, while the rest of us, on our feet, sing praise. Feeling the squeeze of my heart that, had I not turned around just then, the seizure would have come and gone silent, unnoticed. Wondering how many have. That breaks me in the deep parts of my soul. The poignancy of the unassuming voices continuing in worship around us is not lost on me. To stand there, in the midst o...

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...

This chart has been hanging in our bathroom for years. And I do mean YEARS. It has been many moons of patience and energy (mingled with blood, sweat, and tears) to potty train Trevor. There were many moments of despair along the way. Moments of anger and annoyance and the occasional glimmer of hope which was kept us pushing forward. Sometimes people will look at Trevy today and reduce or minimize the journey it's been to get here by assuming he's "nearly typical" now or only "slightly delayed". It wasn't that long ago, he was still smearing his poo everywhere. All over his bed, his walls, himself. TMI, I know, but it was our life for a very long time. We've been through various layers of difficult and heart wrenching things, but it was the poo smearing that most nearly broke me. Today, as I was looking around the bathroom planning for some refreshing, I realized that he no longer needs this chart. I ...

I love so much about this picture. The happy glow of the sun. The sparkle in his eyes. The cheeky in his smile. The fact that he actually posed. Like, stood still for more than two seconds and posed. The crooked pants. A subtle hint that he recently visited the potty and pulled his pants up by himself. The orange shoe laces. The Stitch shirt. A Halloween costume made by a Trevy fan. The hemiparesis curl of his right hand and arm. A reminder of all he has been through. Has overcome. The way his chin is lifted. So proud of his accomplishment. And the blocks. Stacked neatly from biggest to smallest. In a giant tower of sequencing. A tower of miracles. Trevy struggles with sequencing. It is not his thang. Has never been his thang. He’s been working at stacking these blocks since his Early Intervention days! And if I’m totally honest…there were many times I secretly thought he’d never get it. I love this picture so much because it captured ...

    He’s easy to love right now. But I mean, seriously.  Look at that goofy face. Those sparkly eyes. It has crossed my mind that he’s so loveable in large part because he’s so stinkin’ adorable. But what happens when, like kids generally do, he loses the cute factor. Will he still be loveable. Will people still smile at his antics. At him . Will they still light up when he comes in the room, because his super power is making the world around him glow with joy. Most of the time .   These are questions that swirl around my heart and mind.   Yesterday I took the big kids for impromptu hair cuts. Gotta love Fantastic Sam’s. It’s quick and easy on the wallet.   I couldn’t help but notice her sitting in the chair. Something about the way she held her shoulders. The way she moved her hands. I knew quickly that though her hair was gray…her mind was young. Young, because at some point along the way it had stopped maturing. If I had to guess I’d say she was...

  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

    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...

A friend recently asked me to share Trevor's story (thus far) in a video. She's a professor of psychology and thought it could have an impact on her class. I did the best I could with the tools at my disposal. For once, I was kicking myself for not getting that MAC.  I was even tempted to use iMovie on my iPod rather than messing with Windows Video Maker.  Somehow it came together. I confess that it was harder than I thought going back in time like that. Difficult…but also healing.  It’s easy to get caught up in the sadness of the now and overlook the joy of how far you’ve come. If someone had asked me to write the wildest script I could imagine for our family six and half years ago...it would not have come close to the path that has unfolded. Even though this journey with Trevy is very heavy and extraordinarily exhausting, we are SO thankful for where he is today. How far he's come. For the people who have come beside us to advocate for him and support and believe...

    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...

    (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...

    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...

    I’m a sappy head.     Which is why I established a family tradition of praying in the New Year on the beach when we were just newly weds.  We’ve always lived (or been) close to the shore on New Years.  Delaware.  Rhode Island.  Tanzania.  And it just makes my sappy heart feel all warm and fuzzy to stand before the powerful vastness of the ocean and dedicate our lives anew to the One who created it all!      Also, it’s fun the heckle the crazies who brave hypothermia every New Year!!!  There were three of them on our little rinky dink beach this year.     Jonathan says, “Hey, who wants to take a dip with those crazy people?!”      The two big kids immediately shout “NO WAY!”      Trevy (true to form) shouts, “MEEEEE!”     Now for a little back story.     It also happens that there is snow on the ground this year.  And for the first t...