Category: Epilepsy

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Another Purple Day

Saturday is Purple Day, the day to bring attention to Epilepsy. I should probably say something. Maybe come up with some facts for you, an elevator speech. But Epilepsy is so much more than numbers and figures to me. It’s names and faces. It’s friends who carry around pictures of half of their child’s brain post-surgery. It’s a girl who is taking advantage of these seizure free months to ride a sparkly pink bike. It’s kids...

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Seizure

Remember the time your kid had a seizure and instead of choosing Denial, which is Optimism’s twin, by making a grilled cheesed sandwhich, you chose to be the Responsible Adult and give him meds but the needle didn’t work and so you texted your husband but instead of texting your husband you actually texted several of your siblings who immediately texted back freaked out that you were talking about needles and drawing air? Remember how...

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Epilepsy Awareness Month

November is Epilepsy Awareness month. I’m aware every day, thank-you very much. I’m aware that Aidan’s seizures are not nearly as bad as those of our friends, and yet he still gets hurt and his quality of life is most definitely impacted. I’m aware that seizures are not as easily understood as they seem; they aren’t necessarily what you see on TV. Sometimes a strange movement is a seizure and sometimes it’s a strange movement. I’m...

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Potty Talk

While there may be a lot of potty humor in this house of boys, there’s not a lot of potty talk. We’re a silly and ridiculous family and all challenging topics are game for honest conversation, but mostly we keep it clean. Mostly. Now Liam, my first born, is a rule follower, of course. He never swears and he’s very quick to call me on it when my words get colorful. It’s absurd, when you...

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Seeing In

I’ve writtten and deleted this post a bazillion times in my head. I wanted to pull out all the stops and let you in, really let you in, to show you why Purple Day and this entire conversation is so important to me. Yes, there are facts and figures about Epilepsy. There are stories too. But I wanted you to see, really see, what seizures look like. I wanted you to see that they’re strange, and scary,...

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The Cost of Breathing

Did you know that you bend your back a little when you hug? It’s so imperceptible that you probably just reached out as if to hold someone and realized it’s true. Your spine curves a little bit to get closer. That’s the work and freedom of each tiny vertebrae that brings you near to another, holds your heart closer to theirs. And if each of those vertebrae are fused together in one solid, unbending line,...

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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...

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Three Years Later

It was three years ago this week that Aidan was officially diagnosed with Epilepsy. He had been having seizures for two years at that point but it took us that long to realize what we were seeing. There are just so many other issues with Aidan that compete for our attention and his seizures didn’t look like anything I’d seen before. Now we are paying attention. We don’t live in fear each day. We get...

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No Stoners Here

I’m the mother of a 14 year old neuro-typical teenage boy – Liam. In the frightfully near future he will probably be offered pot at school. I have told Liam in no uncertain terms that I don’t want him smoking pot. Though he’s a responsible, rule-following first born child, his brain is not fully developed. Teenagers don’t always make the best long term decisions. I don’t want Liam to be pegged as one of those...

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Purple Day Fact One

Approximately 3 million Americans have Epilepsy. That’s more than multiple sclerosis, cerebral palsy, muscular dystrophy and Parkinson’s COMBINED – yet receives fewer federal dollars per patient than each of these. This is why it matters to me