Those Fleeting Golden Days

As Connor's seizures have continued to worsen over the past year and we've been forced to raise his medication levels higher and higher, we've watched the boy we know slowly become buried under a layer of fog.  It's not just the sedating levels of medication, though I'm sure those have some effect-- it's that the seizures are taking their slow, inevitable toll on his body and mind.  On his worst days, after a long run of seizures, sometimes he spends entire days now so exhausted he doesn't want to do anything but lie on my lap curled into a little ball.  His progress across the board has tapered off, and now we're doing our best to hold even.  It's harder to hold his attention, because he's so focused on just keeping his body together.  His smiles have become far more rare, his clonus (muscle trembling due to neurological damage) has become more pronounced, the difference between his left and right sides has slowly become more evident, and he's having a more difficult time controlling his mouth-- we're often going through three or more shirts in a day.

And yet every once in a while we inexplicably have one of those golden, fleeting days where Connor feels really good, his energy returns and his sunny personality shines through.  Yesterday he woke up laughing and calling out for us.  When I came in to pick him up, he grinned from ear to ear and stretched out his arms; a greeting that I haven't seen for literally weeks.  He chirped and giggled through the morning, waved hello to everyone we met going in to school, and just charmed the pants off of his teachers during the day. 

When he started shrieking with excitement at the top of his lungs in the fabric store, I actually laughed I was so happy.  So we were getting odd looks.  So what?  My child was engaged, interested in what was going on, and demanding we go down the tulle aisle for the third time in a row so he could run his fingers through the rainbow of fabric.  I felt like the luckiest mom in the world. 

It's encouraging to know that beneath that layer of fogged exhaustion, my bubbly, smiling, cheerful little guy is still in there.  It gives me hope that if we can figure out the right combination of treatments someday to finally bring his seizures under control, maybe those glorious days where his genial personality emerges will become the rule instead of the exception.  And while we can't do anything about the permanent toll that the seizures have had on his body, I'm amazed all over again at the astonishing resilience and bravery of my child.  He's doing the very best he can with what he's been given, and on his good days he's well and determined to cram as much laughter and joy into every second he's awake. 

He fell asleep smiling last night.  I'm pretty sure I did too.

~Jess

 

You can find Jess daily at her blog, Connor's Song.