It’s that time again!!!
I cannot believe it’s been a year already!
If you are new around here, or don’t quite remember the details, here’s the lowdown:
November is Epilepsy Awareness Month. With that comes events around the country, including a few our family will specifically be participating in.
The Walk to End Epilepsy is held at the Rose Bowl in Pasadena every year, and last year was our first time. It was awesome and sad all wrapped up together.
And there is also Epilepsy Day at Disneyland. Which we went to last year, and plan on attending again.
Through it all, we fundraise.
For her. For others. For all of us.
We talk about Epilepsy.
We learned from one another.
No two paths alike.
We dispel myths.
We push back against “jokes” that hurt.
All in the name of a sweet girl I am privileged to call my own.
Jilly.
She struggles mightily with Epilepsy.
I hate Epilepsy.
So very much.
I can’t pretend to be smart enough to cure it, but I can at the very least try to raise some money for it, and tell people what I know about it.
And so, I humbly come to you and ask that you read along. Learn. And if you can swing it, donate to our team page. Or buy a shirt. Or a wristband.
100% of proceeds will go to our team page. Last year we raised over $6,000 and had 48 out of 50 states (Wyoming and New Hampshire, I’m looking at you!)
So here’s how it works:
(November 16 is the day of the Walk at the Rose Bowl. You might not live close enough to L.A. to walk alongside us, but you can still represent.)
Here’s a small taste of what last year felt like:
So you in?
Help me spread the word. Tell your friends. Buy a shirt. Donate. Maybe even a $3 bracelet too.
And then put those selfie skills to the test and use them for Good.
Bonus point for Duck Face and a toilet in the background.
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Paypal is requiring that I set up an account. I’ll have to boost the hubsters’ account.
Caryl
I’d love to get a bracelet but $20 shipping to Australia is a bit much. :p
Purple tshirt and homemade accessories it is!
I know! I’m so sorry! Hang tight though. I was going to head to the Post Office today to double check that shipping cost. I know that last year, I only charged like $10 for international shipping and in many cases it was over $20 so I paid out of pocket for that. But I’m hoping that for something as lightweight as a little rubber bracelet, it might not be quite so much. I’ll let you know!!!!
Yay for little kid sizes! Massachusetts is covered! If it helps, I’ll drive up to NH and take a photo there ;)
Also checking in from MA!
Kristi, I’ll meet you in NH!
I hope it’s cool if I de-lurk myself here! The real page doesn’t allow comments (I think that there’s just too many) and I thought I should de-lurk before I go and buy myself some #teamjilly stuff!
So, I’m just a teenager from Texas who cannot WAIT to be a special education teacher in just a few short years! I think I actually found your blog around this time last year on the day that everyone wore purple for Jilly through Underthesycamore. I’m that teenager who is such a mom to everyone and I love seeing how many different people parent their children. I started reading your blog (and I mean literally reading through pages and pages of it) because it intrigued me so much! (I think it’s my inner special education teacher that pulled me to you all). Since that day I have pretty much checked your blog daily (I’m that person that has it bookmarked) just to see what’s going on, especially with Miss Jilly. I cant even begin to tell you how often that I hold my breath whenever I see you sometimes come through on Instagram (I also follow you there!) just hoping that it’s not another seizure announcement, and when, God forbid, it is, I always send I prayer up to Him to surround your family in love, no matter what happens that day.
Before I log off and go back into my hiding place, I just wanted to let you know how much knowledge I have gained just from reading your posts. I am now more aware that siblings are just affected as the child with the special need are, which I hope to remember when I adopt a special needs child when I am much older. Also, ever since reading your blog, I now see Epilepsy everywhere, and I actually know what it is now, due to your posts, though it may just be because I am more involved with children with special needs who have Epilepsy, but who knows! (wow, did that sound like a class essay, or what? I spend way too much time doing homework).
Anyways, I hope you and your family has a great day!
PS: I also cannot wait to see Jilly get her iPad and start talking up a storm! (oh, did I mention I lurk on your LifeRerranged Facebook, too?)
Hello! I have been following your blog for a few years – not so much in the past year or two, as my life… well, sped up! I re-discovered your story a few days ago, and I am so glad that I did, and figured it was high time I delurked myself.
My almost-two-year-old son Hayes was just diagnosed with epilepsy yesterday (docs saw at least myoclonic tonic and complex partial on his 24 hr EEG). The seizures are symptoms of an underlying brain defect/disorder that we have yet to identify.
So… what do I do now? Can you point me in the direction of a group? A cause? Information? Have you written a handbook that I could download to my iPad?
It’s nice to meet you. :-)
http://paintsandpistols.blogspot.com/2014/09/my-son-hayes-has-epilepsy.html
(That’s ^^^ my therapy, I mean, my blog.)
Maryland is represented! Got my t-shirt ordered today. Been reading your blog for-eva and just love it. I had an aunt who had epilepsy and though she’s been gone for at least 40 years, I’m happy to support this worthy cause in remembrance.