happy being trevy

While I do share insights into the heavier side of loving and living beside a child with catastrophic epilepsy, I don't often ask for prayer specifically. Over the years I've come to believe that those who need our prayers will come to mind, if we'll only allow our hearts to listen. I know that our family comes to many a' mind and we are covered in prayer frequently.  But this week Trevor had his largest seizure to date and to be frank, it was terrifying and paralyzing. While we didn't have to administer rescue meds, as I prepped them I was thinking, "This is it. This is the one. Oh God..."  My knees shook for a long time after it was over. It was ironic that I had to ask Trevor to give US time to recover after he came back to us. The seizure struck while we were in the middle of a folksong. He loves music and wanted to keep singing, meanwhile his brother and I were still reeling. The Diastat was still hanging in my outstretched hand. Still, h...

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 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...

The longer we walk with Charlotte , the richer and more beautiful this method grows for all three of my children. It's been about a year and a half since I brought Trevy home for school. I still remember the angst I felt as my heart moved towards that (brave) decision. He has so many layered and complex considerations both medical and educational/developmental. It was terrifying.   And certainly, it isn't easy. But at least once a day, he takes my breath away with a "moment" of validation.  Bristel captured the magic of yesterday's... Experiment from A Drop of Water which is part of the Ambleside Online curriculum

What peer modeling (or inclusion) looks like homeschool style!  Side-by-side timeline work with a friend who not only helps him learn, but desires his company after school hours too! She's upstairs watching MineCraft YouTubes with him as I type.  I've decided to combine Bristel and Trevor's history this year as we learn about the Renaissance, Reformation, and Growth of Nations with Mystery of History. I don't dumb down the learning, but rather allow Trevor to absorb what he can, which is surprisingly more than one might imagine. He really loved beginning to build a timeline and just this afternoon he said, "Mom, me have great idea! Me draw all the characters from Mystery of History. Like Henry the 8th!" We haven't even covered Henry VIII in detail yet, but he found all the Henrys hilarious during the War of the Roses. The concern most often raised by medical professionals is "what about peer models and socialization" rega...

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...

Family nature hikes are kinda our thing. Every Saturday, in nearly all weather, you'll find us trekking the woods or shore enjoying and observing the beauty of Creation. One of Bristel's photo captures. She takes my breath away with her eye and heart! We had developed a bit of a working theory regarding chipmunks. Having never observed them in all the years we've been exploring, we decided that the coastal ecosystem must not support the critters. We've bemoaned it ,even, when observing them elsewhere. They're just so cute and fun. It was a joyful and surprising discovery to see three of the little cuties during our Saturday hike this week! A great reminder that theories are just theories and we must allow our observations to inform our speculations.  "It may seem obvious that if you encounter strong evidence that you are wrong you will change your mind, yet this is hard to do. It is psychologically easier to double down and sti...