My First Experience With Epilepsy – A Mother's Tale

My First Experience With Epilepsy – A Mother's Tale

It was a little before bedtime.  J was enjoying a treat of watching “Finding Nemo” (his favorite movie at the time).  We sat on the sofa together.  He was nestled in the arch of my arm; it was towards the end of the movie. I was 9+ months pregnant with O.  C was in the kitchen, a glance away from us when the sound of snoring from J reached my ear.  I was surprised!  Not only because J doesn’t snore, but he had also never fallen asleep watching a movie, much less his favorite movie (and hasn’t to this day).  

Laughing, I say to C, “Ha!  Can you believe it?  He’s snoring!”  At the same moment, I looked down at him.  From my angel, his eyes appeared closed; a slight movement and, I saw that J’s eyes were open.  Fixed.  His mouth was fixed as well. He was drooling.  

Choking!  

No longer having the fear of a looming seizure in our minds, and because J was not convulsing (my rather “green” idea of what a seizure looked like), we thought he was somehow choking on something… a logic that defies the situation, as I look back today simply because he wasn’t eating and hadn’t moved from me to find anything to put in his mouth and choke on.

He was stiff as a board.

Quickly, it dawned on us that he was having a seizure and the ambulance was called.  Minutes (or what seemed like hours) after this all began, EMS arrived, asking all the appropriate questions: “did he fall”; “did he hit his head or was it jarred in any way”; “what was he doing at the time”, etc.  

His lips were purple.  

More minutes passed after their arrival when the seizure finally released his body, and he was able to breathe.  We still took the ambulance ride.

That was December 1, 2006.  J was 1 month shy of turning 4.

J 3 months prior to first seizure

On June 29, 2012 J underwent a left-sided functional hemispherectomy to alleviate the intractable epilepsy that had grown to be a monster inside his head.  J was 9 years old.  Today, 4 months after surgery, he is 2 month shy of turning 10.

J 1 month before hemispherectomy

I share this with you in an effort to spread Awareness of Epilepsy.  A disorder that can hit anyone.  At any time.  For any reason.  And change the direction of a life.

Epilepsy is a disorder that is hidden until it chooses to reveal itself.

Epilepsy can cloak its mischievousness within a mind, away from ‘public’ view.

Or Epilepsy can choose to send a body into convulsions of one type of another.

Epilepsy can send an active child into sudden silence for moments at a time.

Epilepsy can make a head drop, looking as though someone is nodding off.

Epilepsy can remove the freedoms of the privilege of driving from an independent adult’s life.

65 million people are living with epilepsy every day.

65 million people living with epilepsy also have loved ones, coworkers, caregivers, and friends who are also affected by their epilepsy.

65 million people living with epilepsy, and their loved ones, have their own “First Experience with Epilepsy”.

What is yours?

P.S.  You can support those living with epilepsy during the Month of November by wearing purple, lighting your homes with purple lights and more.  Watch this quick video to see how easy it is…

About the Author:

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.

10 Comments

  1. Lori Lavender Luz November 5, 2012 at 10:15 am - Reply

    Thank you for sharing your family’s journey with epilepsy. Your son radiates light, by the way.

  2. Laura November 5, 2012 at 9:23 pm - Reply

    J is so beautiful Gina. I am glad you shared this with us.

    • Editor November 5, 2012 at 9:58 pm - Reply

      Thank you Laura. He has taught so many so much….

  3. Y'vonne November 8, 2012 at 5:22 am - Reply

    Thank you for sharing….Goosebumps. That picture of J at 4 is just to precious.

    • Editor November 8, 2012 at 10:00 pm - Reply

      That’s one of my favorite photos of him Y’vonne! He actually takes great photos… but now dislikes the camera. Go figure!

  4. Fiona @Banteringblonde November 11, 2012 at 9:27 pm - Reply

    Reading your post brought back the very first absence seizure Will had at around 13 months. He outgrew them and there is no way for us to know if it was in any way connected to the cyst removed in June (by our mutual neurosurgeon hero 😉 – I’m so sad we moved and nervous to meet our new surgeon on Tuesday!) but I have to say that the brain is an amazing organ – I am in awe of J and of you!

  5. Leslie November 12, 2012 at 9:11 am - Reply

    Thank you for sharing Gina! What a beautiful story and amazing family you have~

Leave A Comment