This Big Fat Face of Epilepsy
This is the Big Fat Face of Epilepsy in our house right now:
Yes, that’s a tiny bit of beef and broccoli with a slab of butter and a side of whipped cream. It’s nothing but a whole lot of fat and just a few carbs and protein. That’s Aidan’s dinner. He can have no more, no less.
And this is four days worth of snacks.
They’re hazelnut chocolate cookies, sort of. They took me an hour to make because I had to measure every ingredient carefully down to the gram and it’s a new recipe to me. I’ll make another batch in another four days. Perhaps it won’t take so long the next time I bake.
Aidan is adjusting well to the ketogenic diet. All of the fancy numbers we’re keeping track of look good.
We’re measuring every gram of food, scraping bowls, putting numbers into a calculator to come up with appropriate and hopefully tasty meals, capturing drops of pee.
It’s labor intensive as I’m at the beginning of my learning curve for this diet. We’re starting the Marathon on Heartbreak Hill. I’m taking my weary, discouraged self and gathering every bit of strength and muscle and oxygen and guts and pressing on.
At the crest of the hill it’ll all get easier. I’ll know how to cook. Measuring won’t seem like such a big deal. There will be options on Aidan’s menu.
The big question remains – will it help? Will these damn seizures leave my boy? I can’t even consider that right now as hope feels so elusive at the moment but it’s the one thing making me put one foot in front of the other.
Here’s another Face of Epilepsy in this house:
They took 15 minutes to make because I know the recipe by heart and these will be gone shortly. There’s also the six hours of Grey’s Anatomy I binged on yesterday and the PJs I’ve been in for days.
And here is the most precious Face of Epilepsy in this house, the reason I fight, and cook, and measure, and research, and hope:
Will you join us for Purple Day this Wednesday, March 26? Wear purple. Tell people what you know about Epilepsy. Check out the Epilepsy tab on the top of the page to come up with an elevator speech.
Post a picture of yourself on FaceBook wearing Purple. Email me a photo of you in Purple.