Now I Know.

So…this funny thing.

I follow the Epilepsy Foundation on Facebook.

I don’t really know why.

It popped up one day as one of those “You might like” things.

So I did.

And a few weeks back, I saw that they were hosting a video contest.

The campaign is designed to spread awareness and the prompt is to answer the question:

When it comes to epilepsy, what do you know now that you wish you knew sooner?

 I couldn’t help but mull that question over.  For days.

But I didn’t want to enter the contest.  No sir.  Nuh-uh.  Not me.

Not because I didn’t want to create a video.  Not because I was worried about winning or not winning.  But…

…if I’m brutally honest…

Because it scared me.

It made it…the epilepsy…REAL.

The idea of in some small way aligning myself with a national foundation…not simply as a charitable venture for one of my fundraisers…but for personal reasons…

Scared the bejeezus out of me.

WE don’t need support groups.

WE don’t need campaigns.

WE don’t need purple ribbons.  (Really?  Purple?  It had to be purple?)

We’re good.

Ack.  Pride.

Front and center.

Weeks went by and I pushed it aside.

And then I saw that yesterday was the last day to enter.

And…I threw together a video for it.

Not because I want to win the prize (although hello, iPad?!)…but…because I should probably swallow that filthy pride of mine and admit that yeah…we’re part of this whole thing too.

There is a Foundation for my daughter’s condition.

They offer advocacy and support.

Not just for OTHER people…but…for ME too.

Gulp.

That’s weird for some reason.

I even looked at their National Walk/Fundraiser.  And it freaked. me. out.

I tweeted my friend Kelle and asked how she ever made that leap from mom to…participant.

I loved her response: “I know mama.  It sucks and is scary.  Go when you’re ready.”

To think of being there.  Not just as a supporter…but a…recipient?

Whoa.

You would think that the hours in hospitals and specialists offices would be enough to convince me of this whole thing…but…somehow…this…yeah.  I don’t even know how to put it into words.

But it kinda sucks if I’m honest.  And it’s scary.

So all of that yapping to say that I did it.

I made a video.

It’s cheesy.  It’s TOTALLY homemade.  It’s nothing fancy.

Frankly, I don’t even know if I answered the question the way they intended it.

But…

it’s my first step in really embracing this whole gig.  Taking some steps into spreading awareness and advocacy for epilepsy.

I might even order a bracelet or something.

So, check it out HERE if you’d like.

And, if you want, you can even vote for me.

Although that’s totally not the point.

 

(Apparently you can vote once a day until February 1.  That’s kinda always kind of annoying, but it’s their gig.  Feel free to vote as much, little, or not at all if you’d like.)

 

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jeannett
I'm a mom to four. A wife to one. I believe in story. I love telling you about mine and would love to hear yours. There's really no sense in wasting our suffering and not sharing in each other's joy. We're all in this together...even if it doesn't always feel like it.
jeannett

Comments

  1. 1

    It was a beautiful video. Thank you for sharing with us.

  2. 2

    I’m so glad you were able to overcome your fear and share your heart with us regarding what you’ve learned about epilepsy through the video. xo,ab
    Anne @ anne b. good´s last blog post ..The Very Beginning

  3. 3

    absolutely love it.

  4. 4

    That was beautiful, spoke to me and I voted. I, however, was not ready to “like” the Epilepsy Foundation on Facebook. Maybe in a few days. :) Thanks again.
    Angie´s last blog post ..Response to Tragedy

  5. 5

    It was amazing…just like your family <3

  6. 6

    I think a lot of parents with children with conditions are afraid to get involved. I am sure there are a long list of reasons why such as some are in denial, sothink that it is up to others and so forth. My son has congenital heart diesease. He had open heart surgery when he was three months old. While when you look at him he looks normal. He will have a life of surgeries a head of him, he can’t ride roller coaster, can’t play contact sports and when it is cold he really feels it. CHD is the number one birth defect. Yet it recieves less money than any other condition. Don’t get me wrong all conditions need support. One is not worse than the other, but my point is I think the reason is that parents are too afraid to get involved. It makes it real.

  7. 7

    So pretty! I was teary, thinking of that time when the doctor told the team to leisten to you because “Moms know.” God Bless You!

  8. 8

    Good for you Jeanett! Great video. Kelleyn-I think you’re right. I meet with parent’s after getting a diagnosis of Down Syndrome and I see the denial a lot. I remember when we received my son’s diagnosis. He also had a heart defect requiring surgery and it was easier to deal with his health issues then the Down Syndrome. When I decided to step out I wrote an essay that was published with a collection of other essays written by mothers whose children have Down Syndrome. I am not a writer but my heart told me my son’s story had to be told.

  9. 9

    Jeanett,
    The video you made was absolutely beautiful…just like your sweet Jilly. It took so much courage for you to participate and you should be very proud of yourself! Great job Mama!

  10. 10

    way to face your fear! and the video is beautiful. thank you for sharing your family’s journey with us & the world. may the Lord continue to strengthen & protect you in every moment.
    emily hope´s last blog post ..Only One Resolution For The New Year

  11. 11
    rachel slagle says:

    beautiful! you did a GREAT job. it is so NOT cheesy!!

  12. 12

    I think you did an awesome job. It put a different, yet beautiful light on epilepsy. urple is my favoorite color, don’t be hating. ;o)

    Oh btw, my 2 favorite bloggers friends? = AWESOME!

  13. 14

    It’s always scary to become a part of something that important (and professional) especially when it takes to admit to something…I am glad you did it, after all its about your kid’s safety and well-being!
    Alexandra´s last blog post ..Stuff kids say (or write)

  14. 15

    WAY TO GO!!! Oh my, how this puts into words so much of how I felt when I first joined the Autism Council of Utah. I have helped other charities but to put your name with the cause that effects your life on a daily basis and turned your world upside down is scary. It kind of defines you on a way and that is scarier for me. But the thought that I am actively involved on the autism community makes me feel like I’m making a difference for my son, family, me and many others.

  15. 16

    I felt this same way the day we ordered Spina Bifida t-shirts. To wear. To support. To recognize. To own. Oh the journey. And what a journey it is. A scary beautiful journey. Can’t wait to check out your homemade video. Those are always the best!

  16. 17

    just watched. you win….in my book! xoxo

  17. 18

    I couldn’t get it to open but I know it’s fabulous!
    It is scary. For all the reasons you’ve thought of and all the reasons you haven’t.
    If we were friends in real life, I’d say, suck it up kid and get it done.
    Since we’re not, I’ll just repeat what KH said, do it when you’re ready.
    Cheers,
    Caryl

  18. 19

    Lovely video! Beautiful girl. x
    Selina´s last blog post ..Aaah!

  19. 20

    That’s so heartfelt. I love that you don’t allow the diagnosis to define your family. I love that I feel like I’m part of a big ol’ cheerleading squad – not just for your little darling, but for ALL your little darlings and a terrific set of parents.

    GO YOU!
    Rachel´s last blog post ..Remember when I said

  20. 21

    you rocked it girl!

  21. 22

    I am sobbing right now. What a beautiful video. And a gorgeous family! I have been a lurker at the Epilepsy Foundation for some time. My daughter had her first seizure (that we noticed anyway) last April at the age of three. That began a journey I was not the least bit prepared for an in no way wanted to have to go on. The images you shared – the ambulances, the hospitals, the head wrap – are all so familiar to me. We are still very much coming to terms with our daughter’s epilepsy. I don’t talk about it much. I’ve only written about it a little. Your post reminded me that I need to reach out. Thank you.

    http://www.thewriterrevived.com/search/label/epilepsy