I Said I Was Used To It, But I Wasn't Expecting This….

Shadow Fingers by jennY via FlickrIn many ways, I laugh at my words now. That I’m used to it.

Much of it yes. I know it’s a necessity. The requirements made of a mother raising a child with special needs. I know these are the steps we have to take, that the EEGs are necessary, the movements of the stay overnight, the medication trials that will come and go. I know with J’s LKS / ESES, fighting and winning is liken to a shadow we only can hope to grip with our fingertips…if only for one moment…until it passes and the next medication is needed.

Numbers….

Neither C nor I were right in our guesses for how well Clobazam has been helping J fight his fight. We were both very, very wrong. Where J was 90% spike and wave activity (his brain’s attempt at seizing) during sleep in December 2010, with very little if any at wake, it is now 95% spike and wave activity during BOTH wake and sleep.

95% of J’s life, at this moment, is spent with his brain struggling to succeed during daily tasks while thwarting the spasms of electricity firing multiple times within a ten second interval….12 times (or so) during a single minute.

Now while part of me is panicked, fight or flight with no direction to go, no tangle enemy to wrap my hands around and squeeze with all my might, another part of me is numb. Because we’ve been here. Because I know we’ll be here again. Because I am thinking of all the other things that are now coming into play.

Blood results coming in, some still remaining…but waiting will give us a good picture of whether or not there’s yet another culprit that is the true cause of J’s rare disorder. Whether a disorder even more rare than LKS / ESES has been hiding out in J’s system…running amuck, rattling cages and dancing in the streets….

You can run, but you can’t hide.

(Photo By: JennY / Flickr)

Gina St. Aubin
Gina St. Aubin is a former Victim’s Advocate who now advocates for those with intellectual and physical challenges. Her eldest son is diagnosed with Cerebral Palsy, Autism, Sensory Processing Disorder, Electrical Status Epilepticus during Sleep / Landau-Kleffner Syndrome (a rare epileptic disorder causing verbal aphasia) and Developmental Delays. In June, 2012, her son also underwent a successful hemispherectomy. Gina is the editor, author and owner of Special Happens, serves as a member of the Board of Directors for the SPD Foundation, and resides in Colorado where she is a mother of 3, wife, blogger, writer and special needs advocate. You can reach Gina through various Special Happens connections on Facebook and Twitter, or email her directly.
Gina St. Aubin
Gina St. Aubin

13 Responses to I Said I Was Used To It, But I Wasn't Expecting This….

    • KWombles- thank you. I hope we do too….hope it’s not super complicated too….don’t need much more of that, ya know…lol.

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