This Sums It Up...

Dear Epilepsy...

Yeah, yeah, yeah....sorry.  It's been a rough year.

August came and went, and with it the ten year anniversary of Liz's first seizure.  I wasn't going to say anything about it because that's not exactly the kind of anniversary you celebrate with lot's of fanfare, but I started thinking today about what's happened in the last ten years.

• I graduated college cum laude with my degree from ACU.
• My mother died.
• I got a divorce.
• I started my first teaching job.
• I re-met the man I would marry.
• I moved to Central Texas.
• I got a new teaching job.
• My father died.
• Liz was hospitalized countless times.
• She had countless seizures.
• She acquired viral meningitis from a water park.
• She had a kidney stone.
• She switched meds several times.
• We bought a house.
• I got married to the best dad Liz could possibly have.
• Liz had dozens of EEGs.
• She landed herself in a coma after a seizure that lasted three hours.
• She was airlifted to Ft. Worth twice.
• She passed every standardized test given in the state of Texas.
• She repeated Kindergarten.
• She started a school that truly LOVES her.
• She instantly wins over everyone she meets.

I'm forgetting things.  I know I am.  How do you summarize ten years of a family's life in a handful of bullet points in a blog?  It's difficult!  Those are the things I thought about, though.  Then I started thinking about what I would say to epilepsy if it were a real person that had been with us for the last ten years.  I started to write a letter in my head, and I thought, "You know, you have  blog that you've left unattended for a long time.  It's Epilepsy Awareness Month.  You should type up the letter and post it."  So, here you go.

Dear Epilepsy,

When I first met you over ten years ago, I didn't believe you'd be around this long.  That first night you broke into our lives, I hoped you were a fluke.  A weird health scare that would pass, and our lives would go back to normal.  That first night you showed yourself, I was scared nearly to death.  Holding my sweet sixteen month old baby girl in my lap, we'd been playing a game of peek-a-boo when you snuck in and took her from me for ten terrifying minutes as I watched grown men in official looking uniforms administer first aid to my tiny little girl, eventually loading her up and hauling her to the closest ER.  Watching her convulse and turn blue was just the beginning of the terror, though.  You'd reassert your position in the family many times after that night.  I hate you for it.

After her diagnosis, I spent years wondering why this had happened to my child.  Every time I stood by helplessly while you took minutes, or hours, from her while also stealing her cognitive abilities, I cried out to the heavens above, demanding an answer....WHY?!  Why my child?  What had any of us ever done to earn this horrible condition in our lives?  Eventually, though, I stopped asking why.  I was driving myself crazy with research and questioning, and at one point I realized that there wasn't an answer for me.  God wasn't going to come to my door and offer up a sheepish explanation of what brought us here.  What else could we do but accept it and move on?

Eventually, you moved to a secondary position in our lives.  We learned to live with your shadow standing over us.  We learned how to handle your presence, and eventually, you moved from being a constant fear to a niggling concern.  We know you're there.  We see you every day in some way, whether it's actual seizure activity or Liz struggling to do basic math or remember how to spell Kindergarten sight words.  We refused to let you control us, though.  Every so often you remind us that you're around, though, as if we could ever forget.  We take the time to acknowledge your presence, handle the emergency, and then we pick up and move on.  Do you know why that is?  Because you can't take our hope.  For every EEG with tears because it's uncomfortable, for every hospitalization, for every minute spent on homework with tears, for every pill, for every MRI, for every doctor's visit, for ever single seizure, we have millions of more minutes of happiness that you absolutely cannot take from us.  We resolutely refuse to let you.  You may not ever leave our lives, but we are done suffering your presence.  

For every time there is a this: 

We have hundreds of these:

Regards,

Me.

Ugh. I'm an epic fail.

So, it just dawned on me that I can write more, and it doesn't have to be directly related to epilepsy.  There are so many parts of our lives that have been touched by this godawful condition.  I should do a better job of documenting it.  Also, the kiddo isn't the only one with a chronic medical condition.  Two years ago, I was diagnosed with fibromyalgia, and there are times that I wish I had a place to vent my frustrations.  I don't want to start another blog, since I fail at keeping this one updated.  I swear I'm going to do better.

So, the kiddo is doing well.  She had a check-up with her neuro a few months ago and a routine MRI, which came back as normal.  She goes back to her neuro in about six weeks for another check-up and a routine EEG.  She had a virus a couple of weeks ago, but she came through that okay.  Her fever freaked me out a bit, but she came through it like the champ she is.

She started music therapy through her school last week, and I couldn't be more excited.  It's called The Listening Program, and it's through Advanced Brain Technologies. She participates every single day for fifteen minutes.  The program focuses on neuroplasticity. Even as I'm typing this, I'm becoming emotional.  The program could have been designed for her.  It helps kids with sensory issues, autism spectrum disorders, speech delays, motor issues, and learning delays.  All things that she has struggled with since her seizures started. She's struggling in school.  Her memory was affected by her last seizure; and this program could help her rebuild her memory.  What this could mean for her...it gives me goosebumps.  I truly believe it could help her, and it gives me hope. Hope is the best thing.  

She's growing, and she's beautiful.  Every so often I look at her, and I catch a glimpse of her at sixteen.  She is absolutely magnificent, and I'm so lucky to be her mom.  

Sorry for the super emotions tonight.  I attended a very emotional staff development today.  I'm all in my feelings.  

Good Stuff

So, Liz's MRI was normal. That's the kind of news I like to hear! 

As I'm sitting here, typing this out on my iPhone in a hospital waiting room in Ft. Worth, Texas, Liz is having a MRI ran on her brain. Nothing bad happened to lead us here. In fact, this has been scheduled for six months, and she has her check up with Dr. H this afternoon. It's just...any time that she has to be sedated, any time that she has to have any invasive medical procedure done, I'm scared, sad, resentful, and a crying mess. 

Let's be clear, I know it could be so much worse, but I can't help the fear. I just want this horrible condition to go away and leave everyone alone. Epilepsy steals things from you, especially when you've let your guard down. There's no words for the level of hatred I possess towards epilepsy. 

Liz asked me to wear my Epilepsy Stinks shirt today. How on earth could I say no? 

New Article

When Lizzie was about two and a half years old, she was put on Valproic Acid (Depakote) to control her seizures.  It worked for about two and a half years, and then she had to go off of it because she entered into medicine toxicity.  It was a pretty traumatizing event, and I've looked at Valproic Acid like it's the devil ever since.

Today I read an article that links Valproic Acid to reduction of brain volume.  We noticed cognitive delay starting to develop about six months after Lizzie started taking Valproic Acid.  After reading this article, it makes total sense.

Link to article is here.

On the R-Word.

“Hey, Ms. N, what’s wrong with your fan?” I look to the fan in my classroom that he’s talking about, and I can’t find anything wrong with it. The student says, “It looks autistic. You know…retarded.”


In my mind, I’m thinking, “Really? You chose to say that?” The other students have started to chastise him, and I’ll take a moment later to be proud of them for that. I take a really deep breath to calm myself, and I address the student.

“You probably shouldn’t say things like that-, “I start.

“Oh, I didn’t mean it badly. Like, if another kid is being mean to a kid that has special issues, I’m going to stand up for that kid.”

“But you did mean it badly. You were insinuating that my fan is in some way stupid or deformed, and instead of saying that, you chose the words ‘retarded’ and ‘autistic’. You see, my daughter is autistic. There’s nothing stupid or deformed about her. Using those words to mean stupid or deformed is unacceptable, and until you can increase your vocabulary, you’re just as bad as someone that is being mean to a kid with ‘special issues’ because you’re continuing a belief that those people are somehow less than everyone else. Improve your vocabulary. Don’t let me hear you say that again.”

He continues to try to explain why what he said is okay. I interrupt him again.

“Look, you’re taking a word that describes a person that had no choice over his/her lot in life, and you’re making that word mean something different than it should. You’re taking a word that in the past has meant ‘special needs’ and you’re making it into something negative. It’s not okay. Change your perspective, and change your vocabulary.”

Another student looks at him and says, “I told you. “

I know this is an issue that’s been around for awhile. I mean, there’s an initiative to end the use of the word “retarded” as a way to describe something as stupid (http://www.r-word.org/). It’s not okay. Ever. There’s this widespread belief in the world that we need to teach tolerance.

Here’s my question: Why don’t we teach acceptance instead?

If we’re preaching/teaching tolerance, there’s an underlying thread of thought that suggests that what you’re tolerating is somehow wrong. Are autistic children wrong in their existence? What about people with Down’s Syndrome? Addison’s disease? Doose Syndrome? Epilepsy? There is nothing wrong with these people’s existence, and teaching people to tolerate these issues feels wrong to me.

Lizzie is struggling with this right now. She’s being bullied at school, and I know she wishes that her classmates would just accept her. Heck, for all my preaching about teaching tolerance, I think she’d welcome their tolerance if it meant they’d leave her alone.