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.