happy being trevy

Trevy had an appointment with his Talk Doctor (aka psychologist) today. We're working on identifying feelings and strategies for managing them. We were trying to create a list of calm down choices to reference when he's feeling really stressed. Talk Doctor: So, Trevy, what sort of things do you think you could do to help you calm down? Crickets Me, helpfully: Would going for a walk help? Or maybe playing a game? What sorts of things might we do to help you trap your sad thoughts so you can feel calm again? Trevy: How 'bout you, Mom? What things could you do to not be angry? Like you were today.  

Capturing Trevy's joyful soul is a bit like sighting a fairy, which is to say impossible. Oh, we grab bits of it for sure. A smile here. A laugh there. The twinkle in his eye for just a second. But capturing the whole essence of him is elusive . This harmonica playing video comes mighty close. Right here is why we often say he's magical. Such a beautiful gift it has been and is to walk beside him.

This is especially for the moms who found their way here and are considering homeschooling, especially those with a Charlotte Mason bent, their special needs child this year... I know how scary it can be to take the plunge and decide to homeschool your child with extra special needs. Though his face doesn't show it, Trevor has very aggressive and complex needs, both medical and developmental. Oh, how I wrestled with bringing him home. Could I do it? Would he regress? Am I equipped to handle his very complex needs at home? What if the school won't provide on-going therapies (and they don't)? What if we can't afford to pay for them (and we haven't always and don't currently)? Is a Charlotte Mason approach right for him? All the questions, all the thoughts, all the doubts, assailed my heart as I was drawn towards that decision nearly 3 years ago now. It is NOT easy. Some days are entirely about one thing: survival. So much energy and patience is ...

She did everything right. We put our house on the market a little over a year ago. It sold remarkably fast. Literally, one open house and several offers later found us moving into my parents' walkout basement apartment. There were several reasons why we decided to sell and move in with my parents. Trevor's persistent seizures and living in a two-story house being a prime one. Years ago they'd outfitted their basement as an apartment. It was supposed to be our landing place when we were home on furloughs. Back when we thought our lives would be spent in Tanzania. There was no way we could know what a gift this little apartment would one day be. The move has grown our peace in many ways. One of which is Trevor having a Grams' game hour most days of the week. He was upstairs for his game hour when the third seizure of the day struck. She had yet to witness one of his "big, scary" seizures. Yesterday, that changed. Bristel and I were downstairs doing a...

And just like that, we're back to survival mode. Yesterday was a hard, hard day. His rescue meds required a higher dose than normal to break the seizures. We're not sure why. We're never sure why. The questions from neurology are always the same; as are the responses. Is he sick? I don't think so. Tired. Story of his life. Any other triggers you can think of? I don't know. How can I possibly know? If only we knew. His own broken body and brain are his trigger. I never say that out loud, but its frustration rings wildly in my heart. Jonathan held me and said it feels like we're watching him die over and over again. Every seizure is watching him walk to the brink. By now we've watched him die a hundred times. Except he doesn't. Except he is. His words are movingly poignant. I hug him tighter because there is a deep forging of hearts that walk through suffering and sorrow together. Yes...

The line is indistinct; I'm not even sure when or if I stepped over it. Somewhere along the way, I stopped mourning his developmental losses so deeply. Somewhere along the way, I stopped trying to force him to breach the gap between his peers. Somewhere along the way, I have grown to see the beauty in his childlike spirit. I watched him run about the yard with a friend yesterday. He still runs like a toddler, you know. His big boy body lumbering about with the motor planning and ease of a small child; there is a deep, unspeakable beauty in the way he runs. Watching a young child bounding joyfully about is lovelier than words. It's magical. That same magic still glows about and radiates from him. There is a little place in a mother's heart that does not want her children to grow up and fly away. Trevor won't. He is my baby in the truest sense. That thought used to wrench my soul, and certainly, there is a sadness woven there, but there is beauty too...

Peaceful morning swinging often lures the philosophical from Trevor. Earlier this week he was laying back, arms behind his head, while I gently pushed and chatted with him. Somehow as were talking the number 18 was mentioned. He sighed, "I'm just thinking about me at 18." "Oh? And what are you thinking?" "Drive a car." He craned his head to make eye contact and observed my facial expression, which was probably a mix of sad surprise. He turned back around and continued, "Yeah, I'd love to drive a car when I'm 18." At that precise moment we heard a rumble in the sky above. After a pause he said, "Or an airplane." What am I going to do with this boy? First a car? Now planes! It's the sweetest thing that he's grown very aware of his "special needs". In fact, if he likes a person, the first thing he wants to share with them is "my special needs". When we meet random strangers in...

Standardized testing is hard... Swinging between sections helps! I've decided to administer the California Achievement Test with Trevor this year to give me a good snapshot of his skills. Though he's entering 5th grade, I've opted to use the 2nd grade testing. It's a good representation of his abilities and I'm a big believer in setting him up for success. We're using the online version and I'm providing support by operating the computer and reading as needed. He's really required minimal support and could probably do the computer himself as well, but being an entirely new format for him I've decided it's best for me to manage. He was tired, but in an excellent mood! I think he actually kinda likes doing the testing with mom. It's something different and he's feeling proud of himself because he knows he's answering a lot of the questions correctly. Especially in the math section. He even blew me away with some...

"The most brutal part about it is that one minute he's jumping over puddles and just a little boy alive with joy. An hour later he's tired out of his mind and doesn't even know what day of the week it is." This was Jonathan's summary of life with catastrophic epilepsy after Trevor's longest seizure to date. A seizure which forced us to pull off the road on our way home from our weekly family nature hike. A seizure which stole him away from us for four impossibly long minutes. A seizure which terrorized our hearts as we helplessly watched the drool pouring from his mouth while his body was under siege. A seizure that left us shaken the rest of the day. A seizure that forces us to face the unthinkable; complete the hemispherectomy. My heart is just so fragile and worn. I look over my shoulder and wonder how we found the courage to make that decision all those years ago. But then I remember it was much more hopeful then. My heart was much less sorro...

Shortly after a large seizure event his sister snapped a picture of him, postictal and recovering, snuggled in bed with his dad and I. 

By 10 am yesterday morning Trevor had so many seizures that I stopped tracking them for my own mental health. He has been a little more whiny and anxious than normal, but his neurologist just increased his Trileptal and he's extremely sensitive to changes of any kind. Also, he's averaging 5 seizures a day right now. Crankiness is a common side effect of seizures. He had no fever. He made no complaints. He's been eating and sleeping as normal. Just slightly more whiny and anxious. Increased seizures can be a symptom, but they are also often unexplained. So, we blame the moon, fatigue, changes in routine. Every mom of a child like Trevor knows what it's like to analyze every minutia of their lives in hopes of helping them and caring for them.  In retrospect, I'm kicking myself for not reading the clues. In an effort to increase his level of independence, I let him brush his teeth by himself in the mornings. Each night I lay him over my legs an...

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 ...

Trevor will often blame seizures on random non-preferred activities. If a seizure happens to occur while we're doing Math, for instance, he'll say, "That was a Math seizure. Math makes me have seizures." Of if one strikes while I'm insisting he complete his chores I'll hear, "That was a chores seizure. Chores make me have seizures." And so forth. He's surprisingly logical for missing the "logical side" of the brain. A reminder that we still have so much to learn about the brain and perhaps we should approach brain science with humility. His arguments are cute and funny. I gently remind him that I'm tracking his seizures and know that they happen randomly throughout the day and are not related to any particular activities. I hug him and express that we're going to live life in spite of seizures. I assure him that a healthy, robust life includes a blend of happy and hard activities. I'm pretty sure he's stil...

It's barely 7:30 in the morning and already Trevor is obsessed with an idea. When Trevor is obsessed - there is no rest. His current obsession: to make a Moana themed CandyLand game. It's supposed to be our Sabbath week. I'm supposed to have a week "off". I need a week off. I've spent the past 30 minutes making excuses and putting him off. "Mommy needs more coffee first" and "You woke me up too many times last night, give me a minute". Jonathan, who has a holiday today, decided to step in and is now printing up Moana themed characters and taping them onto the original pieces.  Trevor may not look it, but he's a happy boy. 

We heard the pitter patter of feet shortly after he was tucked in for the night. Technically, it was less pitter pattery and more stomper stompy. Because he does nothing gently. Either way, it required investigation. We're sticklers for bedtime. So, up Jonathan went to see what he was doing. He found him laying on our bed gazing out the west facing window. Jonathan asked what he was doing.  "Watching the sunset, Daddy."  And that's the story of how a coupla stickers turned into big softies.

Trevor doesn't really nap nap anymore, but he fatigues and so do I , which is why I still require him to have an hour rest time each day. From 1-1:45 he is allowed to "read" in bed. At 1:45 he can holler down the stairs for his iPad. And trust me, at precisely 1:45 every.single.day his little voice comes floating down the stairs. "Oh, Mommmmmmy, it's time! Mooooommy!" Usually one of his siblings delivers it to him. Big kids are so handy.   He can then have his iPad in bed until he's ready to get up; usually around 2:30ish. Trevor is a creature of habit. One his habits is grabbing books to bring to bed. I used to keep cute little, pre-filled bags of books. It was so nice and easy. He could choose a bag and wha-lah, we're done. Evidently, he's decided that's for babies and he's not a baby anymore. He made quite the convincing case that since he's a big boy now, he should get to choose his own books. I've agreed and a crate of...

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.

A lesson I've learned while walking beside and loving my child with catastrophic epilepsy... He is far braver than words can capture and his words will always fail to fully enlighten us to all the complicated thoughts and memories he carries inside. We told him we needed to run an errand this morning. We didn't tell him it was to the lab for bloodwork. Clearly, some internal warning system had red flags waving because his anxiety was climbing. As we were walking to the car he began getting weepy. He was wringing his hands, with a wild look in his eye and saying, repetitively, "I don't know where we're going, though. I don't know where." I knew the moment to tell him had come. We are always honest with him about these things, though we do delay the process to save him as much anxiety as possible. I squatted down to eye level. Grabbed both his hands in mine. And told him we were headed to the lab. The words hung there between us. I could see ...

Lesson I've learned while walking beside and loving my child with catastrophic epilepsy... It's okay... even more than okay... it's crucial... to acknowledge his limitations.  There are so many things that Trevor can do. So many things we never thought he'd be able to. But... there are also many things he can't do. Crowds and noise, for example. I thought we might have to leave his sister's ballet recital the other day because he was *this* close to losing his marbles. Once the marbles are lost, there is no calming him. Thankfully, I'd packed his noise canceling headphones. It was really an after-thought because they're not usually enough. He's always surprising us, though, and somehow he pulled himself together and even managed a forced smile for me.  This is only one example, but the face is we are face-to-face with various limitations and challenges he faces, both physical and intellectual, ...