Epilepsy Is Not Invisible – Repost from Jackson’s Journey

Originally published on Jackson’s Journey

My first seizure | Epilepsy is Not Invisible

This is me.  This was take a few short months before my first seizure on December 1, 2006.  After my first seizure, my sister was born within days and I turned four within a month.  Life changed.

I was slowly trying to prepare Mom and Dad for what was to come.  I could feel it within me, the surge of changes… but I didn’t know what they were.  What they would look like, taste or smell like.  I’ve never been able to tell anyone what that seizure was like for me.  Nor the one Mom and Dad caught 9 months to the day later.  There probably were more in between and after… just no one knows.

The ESES was taking over in the malformation of the left side of my brain.  The surgery took the rest.

You can see it in my eyes… what I knew.  What I know.

This month is Epilepsy Awareness Month.  Mom and Dad still have purple lights they use for Halloween on outside.  I think our neighbors probably think they’ve forgotten… but it’s purposeful.  Epilepsy has hit our lives hard.  It has take SO much… much more than any one… any child should give.

So Mom and Dad keep up the purple lights.  So others know.  So they can continue to support me.  To remind everyone that epilepsy is not as the invisible disability everyone thinks it is.  Not invisible… because I have epilepsy… and you see me, don’t you?

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

6 Responses to Epilepsy Is Not Invisible – Repost from Jackson’s Journey

  1. Gina, we all wish you good luck with Jackson and we are sure that he will be alright. I have seen few kids getting away with epilepsy they were using some Indian mediation. Please do consult some specialists and he will be fine very soon!

  2. I too know what Epilepsy is like and what the affects it has on young and old. Yes Epilepsy is real and many people in the US are affected by it everyday. Let us help all those that we know with this condition and continue to support the Epilepsy Foundation.

  3. I missed the Nov. awareness month because I was not aware of it. Thanks for sharing and enlightening me about the purple lights

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