Showing posts with label living life. Show all posts
Showing posts with label living life. Show all posts

Wednesday, November 5, 2014

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.


Wednesday, March 2, 2011

How very true...

"Life is not what it's supposed to be.  It's what it is.  The way you cope with it is what makes the difference."

I think when you're dealing with anything that is difficult, it's natural to think, "This is NOT how it is supposed to be!!"  I know I'm guilty of it.  How often have I looked at Liz when she's had a seizure or she's in the hospital, and thought that very thing?  Too often...I can't help it sometimes.  I just want her to be healthy.

It has taken me a long time to come to terms with her diagnosis, and become proactive. I can't change the fact that she has seizures.  I'm just not that powerful.  What I can change is how I handle it, and what I do about it.  For me, I go into what I lovingly call, "Crisis Mode."  I handle the emergency as best as I can, and then when all is said and done, I cry.  Then we move on.

One of the reasons advocacy has become so important to me is that it is one of the ways I wage war against epilepsy.  If enough people know about it and understand it, if those people tell the government to spend more money on research or they donate their own money, then I've won.  I've slayed the dragon.

Epilepsy isn't going to ruin our lives.  It has tried over and over again.  It has tried to take away my daughter, but I refuse to give her up.  It can't have her.  She is the best gift I've ever been given, and I will do whatever it takes to keep her here with me.  It can't take away her quality of life.  It can't take away her smiles and her laugh.  It can't take away her love.  And every single one of those things is a victory.  Every time she smiles...every time she says, "I love you, mama"...it's a win.  We're winning our battle every single day.

Maybe our lives weren't supposed to be this way...maybe they were.  I'm not the one to make that call.  But you know what?  We're handling this, and we are absolutely making a difference.