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 CAKE.
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.
Because CAKE.
I will probably cry. I will probably be angry.
But I will eat cake too.
BECAUSE WE CAN.
Because cake.
If youfeel so inclined, our favorite group is the Epilepsy Foundation of Greater Los Angeles. They have been a balm to our tired hearts so many times. You can donate here, and then you can eat yourself some cake.
Latest posts by jeannett (see all)
- Dirt in a Jar, Laundry Scientists, and Clean Water - October 20, 2015
- Because Cake. - October 11, 2015
- How to design a luxury bathroom for less - August 12, 2015
Beautiful. Well done. You help me to be grateful that my daughter has only had one seizure, and although epilepsy is on the list of things that describe her, so far it was just a blip. Thank you for that.
I have been following a Facebook page this fall called “Prayers for Emma Claire”. I don’t know how I got there, but I’ve been watching a little baby girl with half a heart (literally) fight for her life. I’ve been watching her parents get their hopes dashed so many times. And I’ve watched LOVE all over her Facebook page. And I read your blog. And this one in particular struck me the same way.
I want you to know, just like I want Emma’s parents to know, that I am so grateful. I ask myself all the time, “Why me?” Why do I get four relatively healthy kids when other parents have to walk such a hard,hard road? I don’t want this to sound like pity or I’m looking down from some high place, but reading these stories does make me so thankful, in a deeply desperate way, where I know that I am not my own person, my children are not mine, they belong to Him. I cry out to God on your behalf, on Emma’s behalf, on Jilly’s behalf. I do look at the pictures of my kids and am just so amazed that they are here and we don’t have to worry about anything more than a few food allergies. It floors me sometimes, precisely because of what other people go through. I don’t deserve it! But it strikes me that even if we don’t have some physically observable issue, we are all that woman, reaching just to touch a tiny bit of Jesus’ robe to beg Him to heal us. We should all feel an acute sense of desperation over what happens in this world and how we are…I think some people are just made more aware of it than others, and in different ways.
And in the midst of all of this falleness, I’m glad that God gave us all our own cake while we wait for everything to be made Right.
This post brought tears to my eyes. I pray for your family often. May God answer all our prayers very soon. Amen.
#becauseCAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAKE
Lovely post…Made me teary. I have a hard time imagining how I would deal with all that you have been through with your sweet girl. I recently befriended someone who’s little girl only has seizures while sleeping, so of course she sleeps in bed with her parents. The terror in her voice as she was sharing her story is something I will never forget. She recently had an experience where her daughter
was napping in her car seat and she started seizing only she was stuck in traffic in LA three lanes from where she needed to be to pull over. She now drives only in the slow lane in case that ever happens again. She’s about to go through all the testing that you did with Jill hoping to find some answers or the right meds…something. I feel awful that so many moms and dads have to experience such scary circumstances with their precious littles. You two are amazing. Cake always!
Hey you! loved reading this today!
I do miss you hear and I totally understand the season of life and the words just not being there! Glad there is instragram right now! Think of you so very often!!
Love to your whole family!! CAKE!
xoxo
There’s wet stuff in my eyes.
yes, made me teary too.
this ( https://www.youtube.com/watch?v=oNsQewlFtEs ) was playing when I read:
“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.”
so grateful that the Lord continues to bring her back to you and that you can trust Him. always.
we too struggle with medical stuff. undiagnosed. unpredictable. and I worry about how it’s affecting our kids’ childhood. but then I remind myself that He is growing them, teaching them, even (and maybe especially) in the hard can’t-be-explained things.
We don’t know each other, you and I. We are mamas from different countries with very different lives and stories. I follow your blog because you have a wonderful way of writing that connects…mamas, ideas, awesome decorating adventures. I do love reading and seeing your house renos and parties and all that glittery stuff, and I always send prayers when you share life struggles. But you must recognize when it’s time to take care of YOU too and that might include taking time away from sharing with us, and THAT’S OK :-) We’ll still be here. And one day if you decide you don’t want to share this way at all, that’s ok too…you’ve touched many lives and perspectives and raised awareness in a wonderful way.
HUGS from one mama to another, and CAKE too xxx
Ah, thank YOU. For your sweet words and your prayers, and frankly…your permission. I’m still unsure of the fate of this space. It holds such a special place. A friend of mine once said that she was teaching her children that sometimes we have to say no to good things. Things can be really really great, but it doesn’t always mean we say yes. I’m not sure what will come of it all, but thank you for understanding and commenting. (A lost art, almost moreso than blogging itself!)
I’ve been enjoying your blog for years now – since Henry was your one and only child if you can believe that! I have commented now and again but admit that I don’t as often as maybe I should. I love your thoughts, your honesty and what you have taught me as far as epilepsy goes. I agree with what Katy said above – you’re under no obligation or pressure to show up here and update us. But know that I check this space pretty regularly and wish nothing but good things for you and your family. I hope you will write more when it feels good for YOU!
Ohhh Dana… I know how you feel. I remember feenilg like I was in the “grips” of epilepsy.. (my daughters), like it was one of those things Id forget while I slept, but then as soon as I woke it squeezed my heart all over again and there was nothing I could do about it.I hate epilepsy with you, friend.I do not know why God allows such tings.But still, we look to the cross and persist with this wild notion that He loves us and He is good. He is and He does. (Lord sustain our faith if it is to be sustained.)