My biggest weakness has always been my biggest strength. Epilepsy. Growing up I was always made fun of. But I never let that hold me back. I was always asked "why do you blink your eyes so much", "why do you keep staring", "why do you keep moving your head all weird", "why do you studder so much". What seems like just random questions was actually more mocking. It was embarassing. I had horrible migraines growing up, my eyes would flutter at random, I would stare off, I couldn't concentrate in class. Doctors never really took me seriously, I was told, “oh you’re just sensitive to the sun.” So, I went untreated for 23 years. Yes, 23 years!
When I was 23 years old I had a full week of seizures, blacking out, eye fluttering, then running a red light with my toddler in the back seat and not knowing how I got to where I was. It was so scary. I went to the doctor who immediately sent me to a neurologist who stated I needed an EEG. Immediately after the test the neurologist asked me how long I had been having the symptoms. "My whole life". "You have epilepsy". I sat there wondering how because what I always understood as epilepsy is you fall on the floor shaking and drooling. Yep, I was that person who had NO clue there was so many types of epilepsy.
I sat there with the neurologist for two hours. I was told due to me being untreated for 23 years it would get much worse before it got better. "There's no cure for epilepsy". They did testing to see where my brain was affected. "There's no explaining your epilepsy, all we can say is it doesn't come from one part of your brain, your whole brain is affected which mean you have multiple types of epilepsy". At that point I was still so confused.
A year after being diagnosed I got pregnant with my second child. My neurologist informed me how dangerous it was. The medication I was on was considered a "class D". I did not want to abort, so the neurologist said I would have to be highly monitored. To this day I don't regret my decision. I had a beautiful baby girl. However I almost died giving birth. At that point the neurologist told me it's too dangerous to have another baby.
By this point I felt I was at the “get worse part”, because I was not only having absence seizures, but also tonic clonic. During pregnancy I can’t remember how many ambulance rides I took due to falls. I was on an insane amount of medication, which later we discovered those medications were deemed unsafe to take together so it was the cause of me getting worse.
So, many years went by, no plans on having anymore babies. However, in 2014, I did get pregnant. I was scared, I was in my late 30s, so already considered high risk just due to age. But I felt this baby was a miracle. I held on. Held strong. The seizures weren’t too bad during the pregnancy, but once I hit the third trimester they were horrible. I had a beautiful baby boy, safely delivered with no seizures. I went on to get pregnant again. The pregnancy was very tough, but I powered through. But I sat there wondering what I was doing with my life. I had beautiful children, but I felt like I wasn’t doing much with my life. I wanted to accomplish something. Show my children, just because I have epilepsy and struggle daily doesn’t mean I can’t do something with myself.
So, that’s where K&A comes into play. I was already cloth diapering. I had always wanted to own a business in fashion. Okay, maybe this isn’t fashion, but I have always been very passionate about cloth diapering, saving money, and being someone my children could be proud of. So I did it. I worked hard. Day and night. I pushed myself. I worked 7 days a week. I exhausted myself to the point I would be bedridden for days due to seizures. It got to a point I was ready to give up. But what kept me going was the many thank you messages I received from customers. The smile on my kids faces, seeing that their Mom made this happen.
In December they determined I’m classified as “non responsive” to medication. Not being a candidate for brain surgery, they decided VNS implant surgery was the best option. They wanted to not only knock out the daily seizures, but knock out the nocturnal seizures.
Months have gone by since the surgery, I am no where close to being seizure free, they have since had to add on a third seizure medication due to me being at risk for SUDEP. I won’t lie. It’s terrifying. To tell my children goodnight each night, not knowing if it’s the last time I get to do it. But much like anything else in life. I’m determined to make it. I love my life and everyone in it.
i have epilepsy, but epilepsy does not have me.