It's frustrating. It's even more frustrating when I take her for an EEG. I can't help but wince every time I see a storm of electrical activity. They're surprisingly (and frighteningly) frequent, even if we don't see anything on the outside.
On the bright side, we are seeing improvements (on the outside, at least) thanks to adjustments to her ketogenic diet. She had a rough couple of days, but we think we know why, and by rough, I mean "Now with 99.99% less roughness than mid-October!!!" I have to admit though, after a few seizure-free days, it felt exceptionally craptacular to see clusters of seizures like that. It's all about incremental improvements right now, though, and we're incrementally improving in the right direction, at least.
Back to what it's like to have seizures; I still don't have a clue. But that didn't stop me from writing a poem about it on one of my favouritest blogs ever, Every Photo Tells a Story. I don't know what it was about today's image prompt, but I felt compelled to write a poem in dedication to Jade and other children who are dealing with epilepsy. It's called "Looking out the Window".
(The lines and squiggles are supposed to represent an EEG.)
~~~~~~~^^^^Colours and lightening^^^^^~~~
And feelings of~~~~~^^^^^
~~^^^~~^^^~~^~^^^~^^^^~~And noises and static~~~^^^~^~^~^~^~^~~^~^~^~~~
- My focus erratic -
Blazes of white\/\/\/\/\^^^^^/\/\/\/^^~~
Closing the window, it's trapped in my brain/\/\/\/
\/\/\^^And I am trapped, too/\/\/\/\/\/^^\/\/\/
\/^^^^^^^'Till the storm starts to wane^^^^^^^^^^~~
~^^^~~~When the colours and lights^^~~^~^~^~^^^~~~
~~~Then the window will open~~~
~~~And I can go play~~~~~~~~~~~
some of Naomi's seizures look like they don't affect her head (brain) at all just jolt her body. Others she'll stop make eye contact wit us, like she knows something is coming, then her eyes roll slightly and she jerks a little. She's had some so little it's just her facial movements that I see, like if her mouth is open it will slightly close but I can tell something has passed over her. Most people would never know anything had happened. Friends who have seen her have seizures often say "How did you ever catch that!" or "I'd have never thought that was a seizure!" This month makes 19 months straight of seizures!
That's a beautiful poem Michael. It gave me chills.
You may not have experienced a seizure yourself, Michael, but your poem describes the aura quite accurately. It's an strange combination of pleasure and fear.
We're thinking about you guys. Lots of love and faith sent your way.
It's been ten years since I had a seizure, but I can tell you that the aura is hard to describe. I think it's closest to disorientation, but that's not quite it.
It's possible that auras are different for people with different types of seizures. I have temporal lobe epilepsy.
Michael! I've never witnessed anyone having a seizure, so for someone like me, it's even harder to relate. But, your poem, and what you wrote about being "trapped" and the "storm" seems to describe what I've read about seizures and their effects. And, it's a beautiful dedication honoring your beautiful daughter.
It must be the scariest thing in the world for parents (you and Fawn) to witness your child (Jade)having one. I'm assuming that each time is scarier than the first. But, it's a great and most hopeful sign that her new diet is helping her and easing her symptoms. And, I've read that the Ketogenic diet has a very good success rate!
P.S. I'm smiling from ear to ear knowing my blog is your "favouritest." Thank you!:)
Michael..this is marvelous. I ask your permission to post it on Windows to the Words Writing for this month's children subject. Let me know if it's OK. And I would soooo much love and be honored for you to send a cute photo of Jade for the WTTW PHOTO page.
Michael, I took the liberty of posting EEG Poem on Windows to the Words Writing because it is so
intriguing and inspiring. Check it out and let me know if it's OK.
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