Epilepsy Awareness

Two weeks ago, I approached my boss about taking some time in our weekly assembly to do a little bit of "Epilepsy Awareness Month" plugging.  You see, coming as it does, after pinktober, the little purple month gets rather ignored.

Who am I kidding?!  Epilepsy, despite the fact that it affects 1 in 26 Americans, is generally Misunderstood.  It's one of those things that we simply don't talk about.  Heaven forfend we should use the word "epilepsy" in a sentence, or talk about seizures, or mention AED-s (Anti-Epileptic Drugs) in polite company.  There's a stigma that still comes with epilepsy...the Demie Diva's teacher is reluctant to discuss it with her class - although I've got a second year to work on that one.

So, my child, with the misunderstood, yet all too frequently diagnosed, neurologic disorder, is the face of Epilepsy for many of the awesome teenagers with whom I work.

However, there are more who didn't, until last Monday, know that my baby is the girl with the silly muscles.

This is what I told them.

"I'm a mom.  Like all moms, I believe that my child is one in a million.  In April of 2011, the Demie Diva became 1 in 26, when she was diagnosed with epilepsy.  November is Epilepsy Awareness Month.  Unlike Breast Cancer, which is something you can fight, and something that can be defeated, epilepsy isn't as well understood.  When someone stares into space, they may be having a seizure.  When their muscles twitch like this.... they may be having a seizure.  When someone falls on the ground, they may not be clumsy...they may be having a seizure.  Last night, I told the Demie Diva that I was going to talk to "Mommy's Big Kids" about Epilepsy, and I asked her what she wanted me to tell you.  She said to tell you about ...'medicine....and my epilepsy doctor...and the machines...and I get scared".  My daughter is 1 in 26.  Become Educated.  Be Aware."

One step back...

Oh man.  My poor girl had a real kick in her faith last week.

It was Grandparents' Day at her school.  Everyone else had grandparents.  Hers didn't fly down for a one hour visit to the class.  It was HORRIBLE.

We will be fixing this error of adult perception NEXT Grandparents' Day, I assure you.

However, she hit a psychological wall as a result of this.  Bedtime, which had been easy, became again hell on earth.  The flopping, crying, and, at oh dark hundred, journey through the house to my bed have again returned.  As we argued, struggled, and ultimately had the screaming fit she so desperately needed, she said, brokenly..."But then I am alone."

Oh.  My.  God.

That was NOT what I expected.

She doesn't want to be at school because she was alone there when her friends had grandparents.  When she goes somewhere, all her friends have two parents.  The idea that Mommy comes back is firmly embedded in her head, but it's the idea that Mommy isn't there all the time that kills her.  I can't fight that one.

How do you fight the phantom parent?

The Demie Diva has a love/hate relationship with her dad.  She frequently articulates her dislike to people like the fabulous Ms. D.  She doesn't want to go with him, but watches for him out the window. She wants more than I honestly think he's able to give, and then, she takes it out on the one person who represents safety and security for her.

It's wearing me out.

Tuesday, I stayed home from work.  My body is in total shut-down mode.  There is an evil and recurrent virus making the rounds of the ninth grade.  It continues to bite me in the butt.  I slept.  The Demie Diva slept.  And, when we got up, we went round and round and round about what we were and weren't going to do/say to Mommy.

Eventually, I burst into tears and sobbed.  I can't be everything my child needs for me to be.  And, I can't fix it.

"Mommy," said a little voice.  "I know.  I will read a story, and it will make it better."

So, I'm human.  I lost it.

I also learn from my wiser friends...and while I don't have a Book of Important Papers, I did send someone to school with pictures of the Diva Grandparents and Diva Maman, Demie Diva, and Diva Chien tucked in her backpack.

Thank God, they worked.