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.

Saturday, November 5, 2016

one for each of us

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 him processing the information and feel him tense up in rejection. This was NOT how he intended to spend his Saturday. Then, miraculously, he physically relaxed into acceptance.

From that point on he never cried. He didn't fight walking into the building. He didn't flinch (much) when they poked him or while they drew the FOUR vials needed. He did perfect. PERFECT.

The nurses were so impressed they let him choose as many stickers as he wanted.

He chose five. One for each of his family members. 

Melt me.

He was so brave.

So heartbreakingly brave.

He slurped a frozen hot cocoa coolatta as a reward.

Jonathan and I were so very proud of him. But we also wondered what he must have been worried was going to happen this morning. Because the way he simply accepted that we were going to the lab meant that all the anxiety he was expressing was stemming from a worse possibility. 

And the Lord knows he has memories of being through far worse procedures from which to draw.