When the Seizure-Free Stretch Comes to an End

When my cell phone rings during the school day, and I see it’s a call from my daughter’s school, my heart always leaps into my throat.

On December 20, as I quickly answered the call, my heart instantly sank.

After being seizure-free for 165 days, she had gone into a Grand Mal at lunch time.  Panic immediately set in.

Even though she was in the BEST of hands, and I was assured she was fine, I felt my chest squeeze tightly as I ran out the door to get to her.

I hadn’t needed to write an entry in her seizure journal since July 5.

There had been no need to note the type, duration and characteristics of a seizure.  We had not been victorious for such a stretch in a very long time.

After five months, I had started letting myself relax a little.  You tend to become a bit more complacent, despite knowing the threat of Epilepsy rearing its ugly head is always present.

I read a quote recently that absolutely, perfectly describes what it’s like having a child with Epilepsy.

“Knowing that a seizure could strike at any moment is like having a stalker.”

They are very unpredictable, and often sneak up with no rhyme or reason.  Those random ones often feel the most defeating.

When my daughter is sick or running a fever, we are on high alert; ready to spring into action should one hit.

When they strike out of nowhere…at school, in a coffee shop, in the car…with no warning or precursor, it abruptly knocks us out of our confident comfort zone.

It’s tragic enough that it takes such a toll on the individual, but Epilepsy is a disorder that affects the entire family.

Since my son was ten years old, he’s known what to do in the event that his sister were to have a seizure.

One too many times, I’ve had to shout for him to start a timer, grab the oxygen tank, dial 9-1-1, call his dad, and even open the door for the Paramedics.

No child should have to deal with something so scary; feeling such worry for a sibling.

My husband and I are afraid to leave her for long periods of time, and feel the need to always be with her.

The “stalker” is always looming.

As crushed as I am when the seizure-free stretch ends, I cling to the optimistic hope that we’ll make it even longer this time around.

I am grateful for every day that I don’t have to make an entry in my daughter’s seizure journal.

I am thankful watching her make developmental progress, without having lost any of the skills she’s attained.

As the clock starts over, we do all we can to keep her safe and to be prepared.

We keep our guard up and wish for our greatest stretch yet.

About Jodi Shenal

I'm a stay-at-home mom with two amazing children. My son is on the Autism spectrum and my daughter has a rare genetic disorder and multiple disabilities. I am passionate about advocating for my children, writing about our experiences, and raising awareness for other families in our shoes. Our family lives for the little things and we've learned to appreciate all the beauty that surrounds us

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