Skip to main content

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. 

Comments

Kenneth Lilly said…
"A mixture of brokenness and beauty..."
Aren't we all? Great post.

Popular posts from this blog

No, I don’t know him personally

  I’ve had several emails today asking if I know Mike W. of Marissa’s Bunny personally.    Trevy’s blog was linked on her site.  Although it’s not now.     I’ve posted here and there at his request.  Because…well…we’re a community.  Us IS families.  And Marissa is wicked cute.  Her daddy has a way with words.  Also who wouldn’t want the world to know about an iPad give-away?    But aside from that…I know about as much as you do.    We’ve never met in person.    Our only communication has been cyber.    I’m a ginormous sap and as such would love to believe that all is right.  That the sweet, beautiful families who were promised iPads will be getting them tonight.  Tomorrow at the latest.  That no one has been lied to.  That the personal thank you for your generosity email I sent him on behalf of other IS families I’ve grown to love and was thrilled to learn w...

the great answer hunt in the land of Infantile Spasms

If I've said it once... I've thought it a million times more. How it's like the more I research...and discover...about IS. The more blurry everything becomes. For every answer found. A dozen questions are unearthed. Remember our whole ARX saga ? Yeah...that threw me for a loop. So much so...that I never went on to post the end of the story. Thus far... See...the unbelievable in the world of genes happened. Because this is IS-ville after all. After Dr. Genes sampled Trevy's ARX gene on a whim...a whim which revealed an unkown (meaning the first time this specific change was found) mild mutation...she proceeded to send Toby's blood off to mad scientist central. With assurances that this was totally unnecessary . She was convinced that Trevor's ARX mutation was the underlying cause of his Infantile Spasms. And that Typical Toby...would prove to be just that. Typical...at least in all areas mutate-able. And yet...Toby's ARX blood sample revealed THE SAME MIL...

I sure hope...

they grow back curly! Saw the "unknown" flashing on the face of my cell phone and knew who it was. Who it had to be. Dr. Fellow. My eyes met Grams' and I nodded. Grams has a pool, see. For super hot days like today. We're also having a septic installed. Which meant no water or facilities at my place. But those weren't really the reasons I was there. Close to mom. The purple ringing thing in my hand was. Only I wasn't prepared for it to be ringing SO darn soon. Shortly after lunch instead of dinner! I swallowed. Took a deep breath. And clicked connect. Dr. Fellow has a very nice phone tone. Clear. Hint of compassion. If only a stitch of humor were added...it'd be heavenly. But there was no humor. Just business. He's very direct. I'm learning that about him. Which explains his short hello. Followed by immediately pushing into the news. Being that it was a unanimous consensus. The entire surgical committee feels Trevor is a good candidate. And then p...