I sat down to write this post many, many times.
But I just couldn’t. My heart wasn’t ready. It felt too big. Too filled with emotions that I couldn’t possibly convey in words.
The morning of, we woke extra early. Roused the kids out of bed at 5:30 to drive the three hours. I poured my coffee at the usual 5 am.
And wanted to throw my mug across the kitchen.
I was furious. Angry that we were doing this. Angry that this was part of our family’s dialogue. Livid that this would be a part of my children’s childhood memories. Furious beyond belief that epilepsy existed at all.
I wanted to rage in my kitchen. I hate epilepsy. So very much. And I hated that it affected every aspect of our lives, in ways big and small. I desperately wanted Normal.
Somehow I instead took a huge, deep breath. And a whisper: “Would you rather your children not understand these things? Would you rather they not have a concept of things larger than themselves? And they are so compassionate and kind hearted. Epilepsy is horrible and terrible, but it has proved to grow your family and your children in ways you couldn’t have imagined. So it’s Good too. In all its ugliness.”
My coffee cup stayed intact that morning. Maybe some morning it won’t. Some morning it might find itself meeting violently with my tile floor. But not that morning. Not yet.
So we drove.
We assembled.
We kissed babies.
We rocked sunnies.
WE JUST PLAIN SHOWED UP.
Lots and lots of us. For her. For others.
But all for the same: for those we loved.
And we walked.
Not only for her. BUT WITH HER.
One year ago, it was momentous that she was able to walk using her walker. It felt epic and amazing and surreal.
I remember wondering if I was overstepping my hopes by even expecting her to use her walker that day. It was still fairly new territory for her. She did it. There were times she tired and had to be hoisted up and hugged and smooshed and smothered with kisses.
Not that anyone minded.
But not this year.
This year she walked THE ENTIRE MILE.
Every single step of it.
Friends, I cannot see my screen.
It’s too huge. It’s almost more than my heart can bear.
Yes. This. I am thankful.
Epilepsy, I hate your guts. But I will take you and make you beautiful somehow.
God knows what He’s doing. This I know.
I’m thankful for my girl. I am thankful for our tribe who loves and supports us so well.
Last year, we lined up and made her a tunnel.
We did it again this year.
This time it looked a little different.
Just a wee bit.
(Can’t see my screen again. Gah.)
Last year, everyone dispersed and it felt awkward and kinda weird.
So this year, we planned ahead and picnicked.
And I made sure to bring cake.
Because no matter how complicated or hard or just plain ugly life can be, there is always, always room for cake.
There is always reason to celebrate.
Always.
And maybe this is a weird thing to say, but watching our families interacting with her. Loving her. Playing and goofing around, I saw something special.
For many, she is the first intimate exposure with special needs. And I am thankful she is accepted and loved and treated with dignity.
And I love what that says about the hearts of those around us. And what that means when they see others and how their perspective has likely changed.
(Can we please note my grandma in the background also mimicking blowing bubbles…)
#teamjilly was a success.
Through and through.
We raised over $4,300 for End Epilepsy.
Thank you. Thank you. THANK YOU. A million times over thank you.
Besides, is there really any better way to spend your morning?
I love this nerdy crew of mine. So much it hurts.
{And just when I thought it couldn’t get any better…well, read THIS POST. For reals. Do it.}
{Last year’s Walk post is here.}
If you’d like to donate in Jilly’s name, the Walk donations are open through the end of November. Tax deductible and all that jazz. But really, super important and know that every dollar, big or small…I am humbled by your generosity and support.
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and now I can’t see my screen….
It’s all so beautiful and heartwarming that I can’t see my screen either.
I’m weeping, my heart hurts! I’m not good with words but know & live some of your pain & anger of a child with epilepsy. Thank you for sharing your journey. God does know what he’s doing! Amen. I agree that we need to “share in each other’s joy.”
My son Evan, age 5, has epilepsy & we are on a journey.
Blessings!
Carla
Oh goodness…. the sassitude coming off that lil #jilly cape is splendiferous!
Oh my goodness!!! I felt the same when we did this walk in San Diego for my son who is 4! Angry we had to be there, but inspired by all these beautiful children there with their families. My son is so resilient!!! I love him fiercely and did not choose this path for him, but like you I have to find something good in it. I feel thankful that his seizures are under control with meds today. I pray this continues, but if it doesn’t, we will work again to find a new path. Thank you for putting a voice to this.
We did this run with team Mallory’s Hope (my daughter).
As a dad and emergency room doctor, the epilepsy walk/run is ALWAYS an emotional event.
Tears in my eyes as I read about the progress your daughter has had in a year.
Some parents brag about A’s in school and first place wins….and others of us rejoice at a “decrease in seizure frequency”, simply “attending school” or (something most of take for granted) simply walking unassisted.
GREAT BLOG
Thanks for sharing awareness,
Tom
I love the Jilly cape. The fact that she was able to walk the whole way? Amazing. Beautiful. Strong. Jilly is strong. Love it. Thank you for sharing this with us.
http://livingtherealworlddream.blogspot.com