Epilepsy Awareness Month

I remember years ago a friend told me, “epilepsy is a manageable disease. Is that all Kaitlyn has?” She wasn’t being rude or insensitive. She was genuinely perplexed. How were we struggling so much with this perceivably manageable problem? The truth is, as much as we know about epilepsy; there’s so much more we don’t. Epilepsy is more prevalent than most of us realize. Among many epilepsy facts posted in the CURE’s (Citizen’s United for Research in Epilepsy) website, one stood out to me today, “Epilepsy affects more people than multiple sclerosis, cerebral palsy, muscular dystrophy and Parkinson's combined – yet receives fewer federal dollars per patient than each of these”. And another statistic posted on many epilepsy awareness forums, but written out well in, Talk About It’s website- that breast cancer is as prevalent as epilepsy and takes as many lives but receives a lot more funding, and awareness campaigns. Why do we compare one awful disease to another like this? Epilepsy sucks all on its own and in its own way. And just like many other diseases & disorders; it comes in many forms, attacks different people in different degrees and levels. From my perception, manageable isn’t the word I’d chose to encompass it at all. It is not easy to deal with. It is life-changing. It’s an unrelenting asshole. It also doesn’t define whoever has it. I hate epilepsy. I wish I could take it away. I have to teach my children tolerance for so much; but I wish tolerance for our days being invaded by seizures wasn’t one of those things we’ve learned.

I have mixed feelings about awareness months and days. I could wear purple every day, and it wouldn’t change anything. Yet at the same time, if I wear purple and that strikes a conversation with someone who is then more aware of epilepsy, that’s a great thing. Because with awareness comes knowledge, community, and a collective fight to find better treatments.

In early 2011, I worked with a few friends and mothers whose children also have epilepsy. Amazing women, and we shared this awful experience that we worked so hard to turn into something positive. We went to Mike McGuire to advocate for our county’s first epilepsy awareness day. He was a county supervisor and this week, he just got elected to the senate. We went to a county supervisor meeting and spoke on our children’s behalf. I remember shaking so much and just wishing I was at home, in yoga pants that had never experienced yoga, with chocolate. We went to fire departments, schools, police departments, friends, family, and our communities. We advocated, wrote letters, hugged strangers, and learned a lot together. Our local paper wrote about epilepsy and it felt like we were fighting epilepsy so effectively that it was tangible. I remember speaking in Kai’s classroom and the 1st graders had the sweetest, rawest (is that a word? Most raw? Rawerest?) questions and statements. Kids are our best selves. I hold those moments with me still, for strength on the days I feel like I’m getting nowhere. At the same time, I feel like if I knew then how much our life would still change & flip upside down; I would have fought even harder.

Here we are, 3 ½ years later from that awareness day we advocated so hard for. Kaitlyn now has a feeding tube, a central line, isn’t physically in school, has a stroller for tough days. W.T.F. How is this manageable? She’s re-learned how to read more times than I can count. That’s such a great (fucked up) example of how her tenacity outweighs every hardship, but doesn’t negate it. Seizures take a lot away. They just do. And then she fights hard to get it back. Research didn’t used to support what parents already saw. Now research shows that seizures DO affect so much. By affect, they can also take skills away. It’s beyond heartbreaking when research, studies, or a doctor’s word validates that. But then, I’ve also never in my life, before all this with Kaitlyn; appreciated life’s moments like I do now. So basically; efff YOU, epilepsy. And thank you.

Is epilepsy all Kaitlyn has? I have no idea. Because epilepsy just means a recurrence of seizures- or a likelihood of recurring seizures. It doesn’t encompass the numerous disorders, syndromes, or multiple systems affected by having epilepsy.

What’s in a day? I’ve written about this before- I think 2 years ago. Or maybe it was yesterday? Let’s go with a day with no appointments to maneuver TPN or tube feedings around or adventures. Just a regular at-home kind of day; the manageable kind of day. The kind of day when people ask me what I do and I say, “I’m just a mom.”

5:00am- get up, start coffee, check on Kaitlyn. Lay next to Kaitlyn because I had a dream about the pump beeping.

6:00am- wash hands. Find tube extension. Wash it. Shake med bottle 30 times. Measure meds. Give 2 meds through the G tube. Pause J tube feedings, one med through J tube. Wash extension. Find the coffee cup I lost an hour ago.

7:00am- wake up Kai. Make breakfast for Kai since he still won’t wake up. Snuggle Kai. Ask about homework, where’s his lunch box? Did he brush his teeth? Clean lunchbox. Find food that would qualify as a ‘balanced enough’ lunch. Make Kai a lunch. He’s old enough to do this on his own, but I love this part of my day still.

8:00am- Wash hands. Hand sanitizer bath. Gloves on. Take Kaitlyn off TPN- change the cap. Take the battery out- find the charging thing. Charge the battery for 4 hours. Take next bag of TPN out of the fridge. Wash hands. One med through the G tube.

OHCRAP. We’re almost late for school every day. Rush Kai to school. Which reminds me I haven’t changed the turn signal light –I’m really angering people when I turn right--and we still need gas.

8:45am- take Kaitlyn off jtube feedings- flush tubing. Homework with Kaitlyn if she’s awake- clean bedding with formula spilled/leaking if she’s asleep. Measure meds for the rest of the day, make formula for the day, prepare TPN bag.

11:30am- Wash hands, hang TPN bag, get all supplies lined out after cleaning the table with Clorox wipes. Wipe down anything that touches Kaitlyn or has the potential to.

12:oopm- Wash hands. Hand sanitizer bath. Gloves on. Start TPN- (2 alcohol wipes, 15 seconds to clean with each one) take battery off charging thing. Wash hands- noon meds through G tube port (shake bottle 30 times).

2:00pm- start formula- clean tube extensions, 2pm meds through G tube and J tube.

3pm- pick up Kai from school- Pack Kaitlyn’s pumps into bags- carry her (& all gear) to the car if she’s asleep- walk with her carefully & holding tubing + bags if she’s awake.

6pm- figure dinner out for Kai. + wash hands, 6pm meds through g tube, pause J tube feedings for meds through J tube. Wash hands. Homework with Kai- reading, etc (normal evening kiddo routine stuff)

8pm- meds through both G and J tube ports. Kai in bed. Kai’s bed routine differs daily really. We LOVE to ‘dance it out’ by turning ridiculous music very loud- lights out and dancing like goofballs until he laughs himself into a tired stupor.

10pm- wash hands- last of the days meds through G and J port. Check pumps- get Kaitlyn settled in. She’s usually awake- doing homework, trying to read, talking to me about everything she loved in the day (seriously, she does this every day and it’s the BEST reminder to stop and appreciate what’s right & good)

Then, find some sleep- in between the battery dying in the CADD pump, exchanging it, filling the formula bag back up- making more formula, etc.

That’s a long list of harsh little realities, and yet it doesn’t encompass much really. The great news- the BEST news, is that this routine is working. Kaitlyn is awake more often than not- she’s accomplishing more- her seizures are so much LESS. She’s gaining weight consistently! We fit in adventures and ‘living’ in our days so much better than we used to. We’ve gone to the beach, to the city, the park, walks, adventures with friends. We’ve also lost touch with many friends. That understandably happens. Our lives are so full and our routine is ridiculously tricky sometimes, but it’s where we are & what we’re in. That stupid line about, ‘it is what it is’- I hate it, and I definitely get it. There are days I want to curl up and cry, get lost in a bag of chocolate and Netflix. And there are days when I’m writing to the governor about home health care, calling our legislators, and speaking up. No matter what kind of day it is, epilepsy affects us. Can I blame it for everything? No. I have to own my situation just like anyone else does.

Epilepsy awareness for me means acknowledging where we are in this craziness, fighting for better, and appreciating the moments we’re in no matter what. When seizures attack Kaitlyn- I am a mix of auto-pilot and frazzled fear. The fear makes me move quicker to respond but it feels like it freezes me too. The sounds are horrible and indescribable. The color she turns isn’t right. I wish I could wipe Kai’s memory clear of our scariest days. Waking up to Kai’s scream in a bad dream- where he’s dreamt his sister died is awful. The way we both jump up when Kaitlyn’s in another room and makes a sound we don’t recognize is tough. Trying to answer Kai’s valid, raw, and heart-wrenching questions is a process I haven’t mastered. The videos on my phone of moments of Kaitlyn’s seizures make me want to throw up. I hate having them, but they sometimes help providers realize what we see. The guilt in this is indescribable as well. It’s so heavy and consuming if I let it sit too long. I have to keep remembering what’s good and right. It’s a constant choice to choose to make a day better by living it to its fullest. I don’t always succeed in doing that, but the days we do are absolutely the best.