Friday, January 13, 2017

in which he wants to create an audio book

I love sharing the happy moments we have with Trevy. Living beside him and teaching him fills my heart with a rich, deep joy. A joy that is intangible and therefore indescribable. A joy that is directly related to my understanding of his diagnosis and how it effects him. It is truly a gift to parent a child who is considered a miracle. I know my "sisterhood" understands this. It's why the littlest (on the surface) accomplishments bring tears to our eyes.

But I fear that sometimes I unintentionally make it sound like he is thriving beyond reality. I've had many people assume he's "normal" or accuse me of being overly pessimistic regarding his future. Let me pause and say, his future is unknown. I get that. I also know, much deeper than anyone outside our immediate family, how astoundingly far he's come.

But make no mistake, epilepsy and the treatments we've had to pursue have left their mark on him. On his body. On his brain. On his emotions. There is not one part of him untouched by his diagnosis.

Yesterday he took in his head that he must create an audio book. And this audio book would be a retelling of his favorite read aloud right now, The Chronicles of Narnia. I was busy and couldn't assist him, but undeterred, he found a marker and construction paper and set to work writing his script. 

Trevy translated the paper for me. It should read: Lucy and Edmund you know says we know the horse and his boy.

Bear in mind, he's almost 10 years old. I was originally astonished that he'd spelling so many words correctly until my hubby informed me he helped a bit. That made more sense, but my heart is ever hoping. Even though every day we work on writing sentences, he clearly doesn't understand where words and letters belong in time and space. He doesn't understand it orally, which is why he rarely speaks an unjumbled sentence. And so it makes sense that he wouldn't understand it in written form either. 

I look at this picture and see a very clear representation of both his brokenness and his miracle. This is the Trevy I live beside and love. A mixture of brokenness and beauty and an incredible gift to parent. 

Friday, November 11, 2016

sometimes pictures say it better

I say often that Trevor's vision loss (right hemianopsia) is one of his most complex, challenging, and frustrating to explain disabilities. He, literally, cannot see anything to the right side of both eyes. It's a very significant field cut. For years I've been attempting to teach him that he has a "blind side". My hope is that one day he'll begin to intuitively sense when something is there. In the meantime, I'm terrified that he'll be smushed by a car he didn't even know was coming! 

Because he does an excellent job navigating the world in spite of his field cut AND we do a thorough job keeping him safe, his vision loss is an invisible disability to most of the world.

These pictures do an excellent job of giving a tangible lesson on how dramatic his field cut is.

In this first picture, notice how close the horse (baby is peeking through the fence too) is to him. He has NO idea she's there. He doesn't suspect anything. 

The next picture was snapped just a second later when he was told to "look on your blind side". You can see he's laughing, but his body has also curled up in a defensive posture. He was startled that she was right there. He didn't SEE her, but he also didn't SENSE that she was practically giving him a kiss!

His vision loss affects every waking moment of every day. It impacts his ability to see text on a page, to navigate hiking paths, to pour himself a drink, to find me in another room...

And yet, he never seems to mind. He just keeps being Trevy and figuring out ways to live to the fullest.

Wednesday, November 9, 2016

read alouds and nature hikes

Nature hikes and read alouds have become an important part of our lifestyle thanks to my infatuation with one Miss. Charlotte Mason. 

I've been surprised with how much Trevor loves our nature expeditions. The heat holds him back during the warm months, but once the air gets chilly his stamina increases. He's usually the one begging to go for a nature hike

I've been equally impressed with how much he loves reading aloud...and books, generally. 

We recently started reading The Lion, the Witch, and the Wardrobe during our daily morning meeting. The morning meeting is when all of us gather in the living room for "together work". Last week we read the part where Edmund meets the White Witch who was riding by in her sleigh.

During our walk today, Trevor plopped himself in this hollowed out tree, which with applied imagination does resemble a sleigh, and declared...

Look me! I'm the witch from Narnia!

Trying to pull an oral narration from this child is a form of cruel and unusual torture...for both of us! But he is clearly receiving and thinking about so much more than his words can express. These are the moments that validate my educational choice for him and keep my heart hoping.