Gentle Reminders

Last week on our way to dinner, I was talking to The Husband about recent research with cannabis, and how it could change so many lives in regards to epilepsy.  I said something like, "Can you imagine?  If the government changed the drug classification, we could be staring at a healthy control of seizures!  I mean, I know she's well-controlled now, but in the future, she could be 100% without all the horrible side effects!  We could be looking at the closest thing to a cure we may ever see."

Liz piped up from the back seat, "Mom, are you talking about me and my epilepsy?"

"Yes, hon.  We're talking about what it would be like for you to not ever have to worry about seizures again."

"But, Mom...I don't want to get rid of my epilepsy."

"....Okay...?  Why?"

"Because my epilepsy is part of what make me, me.  I like me just how I am."


Out of the mouths of babes.

Sometimes it's hard to see beyond a diagnosis.  It becomes such a huge part of your lives because it has to.  You get caught up in what it has changed, even when you're not cognizant of the fact that you're feeling that way.  It's been a part of your feelings for so long that you've accepted it as part of you.

Occasionally, I've really thought about what Liz would be like if she'd never had that first seizure or any of the seizures that followed it.  I imagine this wonderful, beautiful, strong young woman that's fierce and powerful.  She grows up and has the world at her feet.  I mourn that Liz has never had the ability to meet or become that person.

Then Liz reminds me that she's never mourned that loss because there's no need to.  She's beautiful, strong, wonderful, fierce, and powerful just like she is.  She's also kind, empathetic, loving, joyous, fun, random, and spontaneous.  I've spent time over the years focusing on what could have been, rather than focusing on what is.  I don't do it often, mostly just when we're struggling with her condition more than normal.   I'm sure it's completely normal when dealing with any kind of health problem within a family, but sometimes I need to be reminded that it's part of our lives, just not all of our lives.

I am so profoundly lucky that I get to be her mom.

Holiday Reflections

I've always been thankful that I've been Liz's mom.  I wasn't one of those young moms that had a baby in her early twenties and then spent the rest of my early twenties regretting it.  From the second I knew she existed, I loved her unconditionally and irrevocably.

As she grew, I tried to take in the special moments that I knew were special and make memories.  I wrote down the hilarious things she says.  I cuddled when she wanted to.  I made special efforts for family time when she was in good enough health, and I loved every single minute.  As she's progressed into pre-teen years, I'm fully aware we're entering into a time of lasts.  For example, this may be the last Christmas she believes in Santa.  For all the lasts we're having, we're also having a few firsts.

I never realized that we hadn't gone to a Christmas parade before.  It was one of those things that I always heard about it after the fact, and we were sad we missed it.  This year, though, I heard about the parade very early on the day it was set to happen, and we went.  We froze our keesters off, but we went.  Seeing Liz loving all the parade floats lit up with Christmas decorations made the frigid temps worth it.  Hearing her belt out "Let It Go" every single time a float passed by with a Frozen theme warmed my heart.  Having her say, "MOM!!  That was the BEST THING EVER!!" on the way back to the car brought more than a few tears to my eyes.

Yesterday we went to the local Christmas fair.  Texas is nothing if not a bit bipolar when it comes to weather, so while there was a windchill of 25 degrees on the night of the parade on Monday night, yesterday it was a balmy 70 degrees most of the day.  We had a blast.  She rode rides.  She won a stuffed animal.  We ate copious amounts of junk food and laughed at the ducks trying to snag a bite of our nachos.  We stayed until Santa arrived on the scene, and then walked back to our car.  It was another first for us, and she'd been looking forward to the day since October.

Through it all, I couldn't stop smiling.  I get to be the mom to that amazing little girl, and we get to share wonderful moments together.  I wonder what she'll be like as a teenager.  I wonder if she'll be moody and sullen or if she'll be like she is now.  I wonder if we'll always be as close as we are now, or if she'll distance herself as she progresses through the minefield of being a teenage girl.  Whatever happens, I'll continue to be thankful that I am her mom.  She has always been the source of immense of amounts of joy, and though she may end up as a moody teenager, I don't see that changing.  Her very nature is joy and peace.  I am so lucky.

Happy Holidays.

Check Out This Video

Ted Talk in Boulder About Medical Marijuana and Epilepsy

I can't tell you how hard I cried as I watched this video.  I can't imagine how scared and frightened this family was every time their sweet daughter seized.  We're so lucky that Liz reacts well to meds.

On top of that, though, my jaw dropped when he said that there was evidence of the brain being repaired by the CBD in Charlotte's Web.  Our struggle isn't only with the seizures, but also with the loss of cognitive ability that Liz has experienced.  I fervently hope that the FDA reclassifies marijuana soon.  Once that happens, legitimate research that won't land you in prison could begin.

**As an aside, please don't read this and assume I'm a "total pothead."  Seriously, Josh Stanley said in the video that Charlotte's Web has no psychotropic effects because they removed the THC.  I'm not a total pothead.  I just want my kid to be able to live a normal, healthy, and full life.

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!