6.06.2018

always with an eye towards the horizon

My heart has been an avalanche this year as Trevor's seizures have re-emerged. While I share my heart fairly openly, there are many layers of which I speak nary a word; some pain is meant to be private.


One source of shareable pain and frustration is the perpetual bumping up against those who cannot seem to grasp the staggering, impetuous nature that is chronic, catastrophic epilepsy. I tend to be good with the words, yet try as I might to apply the most bold, expressive language possible when describing Trevor's seizure disorder and how it impacts our lives every day, every moment, still, there are those who minimize or remain blind to our struggle. Some, even as they bear witness to his seizure disorder with their very own eyes.


Jonathan feels we own a bit of the blame for this. We live quietly and strive for peace "in spite of". In short, we do a damn good job of "holding it together" which allows room for misinterpretation by the undiscerning. They miss the tragedy of the seizure event and focus instead on how we carry on after it's over. We carry on because we have no choice. We carry on because he wants to live. I'll write that in poetry form some day - how so many of the choices we make, the way he inspires us to greater courage and tenacity than is our natural bent, flow from his desire to live. 


Trevor does not have "once in awhile" epilepsy. He has unrelenting, attack him daily, epilepsy. He needs a watchful eye on him, always. Every moment of every day. If we do not have a state-paid caregiver, that responsibility is relegated to his family; most frequently myself or Jonathan. 


He needs constant care because epilepsy is a treacherous, unpredictable villain. If epilepsy were polite enough to tell us when the next seizure will strike and how long it will hold him hostage, oh how different our lives would be. Still sorrow laden, because I have yet to encounter anything personally so tragically heartwrenching as watching him seize, but at least there would be a sense of control, of knowing. But epilepsy is not polite. I say again, epilepsy is treacherous and strikes whenever it pleases. 


This morning, for instance. Before I'd even finished my second cup of coffee, a three minute seizure ravaged him and shredded us. Sleep at least comes for him afterwards, allowing him space to recover. I'm not sure my own heart will ever recover this side of Eternity.





I try to convey the pain, in hopes of leading understanding by the nose. Over the course of the past eleven years, I am continuing to learn that you cannot force enlightenment on anyone. It's a matter of the heart. I only know One who can remold hearts.


There are those who intuitively understand, with whom our hearts may knit; there are those who will encounter the walls of protection we erect to shield our hearts from bitterness when met with ignorance. All the while, we will continue our pilgrimage living as fully, as faithfully, as possible, never without holding unspeakable sorrow in our marrow waiting for the day when all tears will be wiped dry. Always with an eye towards the Horizon.

5.22.2018

swinging in the morning

Trevor has the sweetest, most insightful conversations while on the swing. I'm convinced all of his speech work should be done while swinging!


When the sun is shining, he loves to head outside first thing in the morning. It's peaceful swinging and listening to the world wake. He craves feeling peaceful. We have a variety of songbirds in our neighborhood and their cheerful voices never fail to gladden our hearts. 


This morning Trevor shared, his words far more adorable than my reinterpretation, that it's confusing to him how he's "a kid with words" but in the mornings he forgets them all until about 10 o'clock, at which time they return to him. He went on to express confusion about being able to remember some words, but not all. He shared that it's frustrating, though his grin and dismissive laugh revealed that he's handing his frustration really well.


After pondering for a minute I thought to ask him if he knows the words he wants to say in his mind but has trouble speaking them with his mouth. His little surprised face was priceless. It's like he was thinking, "How do you know that?" 


He's been very chatty recently. I can't help but believe it's related to initiating The Nemechek Protocol. This burst of speech has given me some new glimpses into his heart and soul. There is something unspeakably poignant and lovely about that.

5.16.2018

testing is hard

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 of his numerical creativity in approaching problems that were new to him. It shows that he's truly understanding some of these mathematical applications and it warms my heart.


We had some sweet and humorous moments along the way.


Like that time he was supposed to identify which word needed to be capitalized in the following sentence: 


May i play with Harold? 


And instead he responded with, "I would totally love to play with Harold. He has a purple crayon!"


Or how about after a math section which included measuring the way he looked at his feet and said, "Mom, I know this is math. My toenails is too long!" 


He wasn't wrong either.


We took to the swing between each section because it's his favorite. He totally melted my heart with a conversation about his future. He told me not to worry as he's intending to live with his dad and I forever because...


"You be old you need me take care for you."