For the better part of it, our Memorial Day weekend was uneventful and relaxing. The Slayer worked her puzzles and passed the time on her iPad. She sampled some of her favorite teas, and lounged in several pairs of pajamas.
The only events this weekend were a handful of seizures and auras. We have become accustomed to these. Most are false alarms. She has “the funny feeling” and we quiz her to decide whether or not to give her medication. In most instances, it is only a feeling. She waits with a furrowed brow for the odd sensation in her stomach to pass, and then she moves on to her next order of business.
But then there are the times…
With age and experience with her seizures she is beginning to know when the real thing is coming. This realization is sad to witness. On Saturday, she told me many times that she was having that funny feeling. But there was something different about the way she told me when the real seizure hit.
–Dad, I’m having the funny feeling
–Do you think you need the med-
–My name is Jordan. My name is Jordan. My name is Jordan.
Then she cried for her mom before repeating her own name again–a way to convince herself that her mind was not about to leave her. But it was. And for the next 5-10 minutes she was completely absent, fighting us to crawl off the couch, pupils widened so much that the blue of her eyes nearly disappeared.
We’ve been told that these experiences are more traumatizing for us than Jordan. When we ask her about them, she never remembers any of it. But it makes me sad to hear how distressed she now becomes in those fleeting seconds before. It’s a terrible thing to hear the fear in the voice of one you love. I wish I could take that away.
Today, she was very mellow. She was alert and able to speak, but just quiet and restful. She napped and stared off into vacant spaces. Though I try not to connect dots that aren’t there, I couldn’t help but think of her about this time last year when she had the bad reaction to her seizure medications. She became a listless zombie who sat with me in the room but wasn’t really there. I wouldn’t go so far as to say that’s what she was like today, but she wasn’t her usual spirited self. So, I find myself a little dark. And when I get dark, I turn to writing.
Her life’s a fair ground in autumn.
There are echoes of laughter in its alleys.
Shadows of a chasing child
run fast against its gaming stalls.
In the cool dusky breezes of her mind
live warm ghosts of summer
Rushing with sugar,
delighting in freedom,
Pining for a ride on the ferris wheel.
Her memories are a painted dust
That scatters such you have to breathe in it.
It smells of popcorn and hay
And the soles of skipping shoes.
This fair ground belies its seeming stillness.
Life whispers here where once it roared.
A well of hope rests behind those wide black pupils.
And from the blues a lingering love.