It’s been so quiet in this space for the last year. There are a million reasons for it. Some good, some just plain lazy, and some centering around the concept of “seasons”.
I have sat down at this screen more times than I can count to write. But the words won’t come. The children rouse. The day begins. And the quiet space is gone until the next morning, when the words sit stagnant somewhere inside for longer.
Andy asked me when I was going to get started on #teamjilly stuff this year. Our annual fundraiser benefiting the Walk to End Epilepsy. A wildly successful fundraiser that has raised over $13,000 in the two years and SO MUCH support.
My People know how to rally. This is certain.
“I’m not doing it this year.”
“What? Why not?”
We talked some. He told me he’s seen a difference in me lately. Did I need to go talk to someone? He said that he thinks this year’s road blocks and constantly changing seizure patterns are affecting me. I told him, that day, that he was crazy. I was fine. I just didn’t feel like doing it. Something about a full plate. No margin.
But he’s right.
It’s been a hard year. A gloriously good year too. No doubt. But epilepsy has kicked our butt this year. It has always brought with it restrictions and changes and The Things We Cannot Do. But this year we also cannot be near water. Something about the way the light flickers. We aren’t sure how sensitive she is to it, but either way, it doesn’t matter. We must Avoid. We can experiment next summer, once meds are stable and we’ve hopefully given her little body a break. I prefer baking soda and vinegar volcano experiments thankyouverymuch. Those don’t end in 911 calls and ambulance rides if they fail.
Facebook was hard this summer. So many photos of lake trips and pools and beaches. I wasn’t angry for those who posted, and surely I wasn’t so self-centered as to think they shouldn’t post them lest they offend me. But each splashing photo stung. Every goofy smile in bright pink goggles and neon orange arm floaties hurt. Jealousy. Daddies catching littles jumping in mid air. Anger. Cannon balls and inner tubes. Some bitterness to round out the ugly bunch. I wanted to type in big all caps letters “DON’T TAKE THIS FOR GRANTED. BE SO THANKFUL THAT YOU CAN PLAY IN THIS WAY.” But I never did.
A friend of mine, after asking where we were headed the next week said “Wow. Disneyland again?! You guys really like that place!”
And yes. We absolutely do. Disneyland IS truly our jam. We love its hot, crowded Dole Whip slinging guts. But this summer, it was our only choice. Hiking, camping, biking, lake trips, beaches, anything with a pool…the kid can’t even take a bath. We must be within 15 minutes of a hospital. We cannot have water play. Her cerebral palsy limits physical excursions. Beyond theme parks in a metropolitan area, we cannot do what most families can.
So while we are fluent in Disney Magic, we don’t have much other choice. It helps that we love it.
Each time we are invited to pool parties or vacations centering around water, we are forced to decline. And each time is a painful reminder of this awful disorder that takes so much, so often, from so many. It aches to say no because it means I’m also saying no for the others. The ones who don’t have epilepsy on their medical charts but bear its scars and restrictions just the same. The brothers and sisters who also Cannot Do.
But as I wallow in my anger at these things…and how it affects her siblings…I remember that we are not the only ones. These things, in some variation or another, are true of most, if not all, special needs families. This is our communal reality in many ways. A life of Sitting Out. A life of courage and bravery and sweat dripping down your back and ignoring the stares when you finally do decide to Try Something Different.
But then, as I always do, even if sometimes it takes longer than I care to admit, I Remember.
I Remember how beautiful it all is too.
I Remember how kind and compassionate it makes my other children.
I Remember how it brings my husband and I together so often.
I Remember how her story is ours and how it helps others feel validated and in company.
I Remember CAKE.
If you’ve been around any of my social media channels, you know that I often reference cake. Or cupcakes. Or donuts…which are really just thinly veiled cakes, socially acceptable to eat before noon.
A few years ago, after a particularly long seizure, Jilly was in a deep state of drugged out exhaustion. We were thankful she had stopped seizing, but then came a new terror…was she still there?
You see, when your child experiences HOURS LONG seizures, there is always a question of if additional brain damage was done. There is always a shrieking fear in a parent’s heart that yes…it has stopped…but will she be back in all her previous self? Or did we lose pieces of her this time? Will she ever be the same? Was this The Time It Happened? In so many ways, the time after a seizure is the worst for parents. Our outsides may look composed, but our insides are panicking, ready to burst at the seams, but for the weary skin holding it all in.
It certainly doesn’t help that hours long seizures and several rounds of barbiturates to stop them, leaves a little girl a rag doll mess. This time in particular, she was in extra bad shape. My husband and I frantically searched each other for the words, but too terrified to say them out loud.
Instead, he leaned down, moved a rogue blonde wisp of hair behind her impossibly perfect ear, and whispered, “If you come back to us, Daddy will buy you cake. Do you want cake? Daddy will buy you cake and you can have it all to yourself. You don’t have to share with the others. You just have to come back.”
And her eyes crinkled at the edges. There was a twinkle. And the faintest smile you ever did see.
She heard him. She understood.
He looked back at me and grinned that signature Andy grin that I fell in love with so many years and pounds ago.
You see, Jill is also mostly non-verbal. But one of her first, and at the time, only words was CAKE. Never ever simply cake. Always CAKE. Always exuberant and with a bounce, CAKE.
Daddy spoke her language. As he always has.
Several hours later we were discharged and sent home with a weak and tired little girl. But heading home.
I was confused when he passed the left turn to our house. In my relief I had forgotten. He pulled into the grocery store. Ran in and came out with a cake. Bright yellow with gaudy plastic butterfly rings stuck in it.
Daddies are the best Promise Keepers.
She was too sick and tired to eat it that night. But we saved it. She ate it for breakfast. As one does.
So now, after every single seizure, we have cake. Or donuts. Or sometimes both.
Because the seizure stopped. CAKE. Because we are going home. CAKE. Because we get to call her ours. CAKE. Because we walk this path in a shockingly brilliant community of support. CAKE. Because I know it’s scary, brother and sisters, to watch and see, but we are a fierce family. CAKE. Because fill in the glorious blank. CAKE.
Because sometimes it takes a determined, tough as nails little girl to remind us that even in the ugliest times, there is always something to celebrate.
There is always always always time for CAKE.
It has become our family’s inside joke. Our secret language. Our battle cry.
And so this year, I will sell the t-shirts. I will raise the funds. I will walk.
I will probably cry. I will probably be angry.
But I will eat cake too.
BECAUSE WE CAN.
I’ve opened up the #teamjilly shop where you can buy shirts, hats, wristbands and even temporary tattoos with all proceeds benefiting the Walk to End Epilepsy. We will even have an Instagram auction next week. It’ll be a good time, so follow me on Instagram and/or Facebook if you don’t already. And get your rallying hat on. We will celebrate and scream it from the rooftops together. Epilepsy sucks so much, but CAKE.
So let’s get shopping. Let’s get sharing. And if you are so inclined, you can donate directly to our team page HERE.