Front Row Seats – {epilepsy series}

Today’s post is part of a series on epilepsy, and is written by Katie.  Her brother John has epilepsy, and being a mama to more than one, I’m always extra interested in hearing what adult siblings of special needs have to say about their experience.
Seeing the castle from across the ice there were many little girls dressed real nice.


And then there was us. While most parents would send their 22 and 25 year old children to a concert on their own, and worry about what kind of trouble they get into, I knew buying three tickets was a better idea. My dad isn’t a huge Disney fan, so instead I invited my mother to join us.

To be fair, I have already seen Beauty and the Beast on Ice. I was 5 years old, and my Grandpa took me. As a 5 year old I had a 2 year old brother who tended to steal the show. He started having seizures at two months old. Grand Mal seizures, the big ones that knock him out, make his body shake, and at the time could go on for hours. My first memory of John having a seizure was at my grandparents house. I can remember being at the top of the stairs watching the paramedics do their work. I don’t know if I was scared, I suppose my memory has protected those emotions.

Life with a special needs sibling is normal. Mainly because I have no idea what “normal” is for other families. I only know my normal. As a child I loved Children’s Hospital in Minneapolis, they had McDonalds, and the playroom had my favorite Little Mermaid puzzle! As a teenager I would look forward to joining my parents in the cities for a Doctor appointment, because it meant going out to lunch, and maybe a stop at the Mall of America.

Throughout the years I have taken a special interest in watching siblings interact. When siblings fight is especially fascinating to me. I don’t know what its like to fight with a sibling. I would sing along to John’s Disney music and he would tell my mom “Katie’s singing (in an tattletale tone)” and he wouldn’t stop telling her about it until she said “Katie, no singing, that’s naughty you ought to know better.” Of course I understood it wasn’t really naughty, but I also knew it wasn’t fair to sing along and continue to torment him.

To be perfectly honest, these interactions still occur on a weekly basis. I like to sing along, they are the songs of my childhood too, and John shouldn’t get to claim them as his own.
John continues to have grand mall seizures about every 10 days. This has resulted in John acting and thinking like a 4 year old. In addition, he has some muscle issues (undiagnosed) so as he grows older we become more dependent on a wheelchair to get him from Point A to Point B.
There have been hard days, but I wouldn’t change the way life has worked. Having John as a brother has enriched my life. I could be jealous, or bitter that there are times when we can’t do things as a family because of John. We never went camping, although even with a healthy brother I can’t imagine my family sleeping in a tent together.

My family operates a little differently, we all take our turns caring for John, and give each other breaks as we need them. I will stay home on a Saturday night to babysit while my parents go out to dinner with friends. I’m not a saint, I usually have gone out with my friends on Friday night and don’t need another night out on the town.

I know what true love is, because its the love I feel for him. I live at home right now, not because I have to, but because living far away from him just isn’t fun. What is fun, is not paying rent to my parents and then using some of that “rent” money to fund memories that we can share together. Oh, and some of that money just went towards a Team Jilly bracelet, because I can’t think of a better accessory for me to wear!

* * * *

Ah, I can only wish that my kids still love each other into adulthood this much!

I just love it.

As with all of our series, we are also pairing it with a fundraiser.  This time, my family is participating in a 5k Walk benefitting The Epilepsy Foundation of Greater Los Angeles.

Please consider donating HERE.

Even $5.  If everyone who read gave even $1, we would raise enough to pay for a year of college tuition!  (Not that that’s what we are fundraising for…just saying.)

So please, every little bit counts.  Promise.  Remember baby Cliff?  This very same group of readers raised over $9,500 for him…with the average donation at about $10!


We are also selling shirts, bracelets, and printables in our very own #teamjilly shop.

Proceeds from sales will be given directly to our fundraiser as well.


Don’t be left out!  :)



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I'm a mom to four. A wife to one. I believe in story. I love telling you about mine and would love to hear yours. There's really no sense in wasting our suffering and not sharing in each other's joy. We're all in this together...even if it doesn't always feel like it.

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  1. 1

    Loved hearing about this Katie! John seems like such a blessing. :)
    Emily @ More Than Just Dessert´s last blog post ..Under Construction!

  2. 2

    Such a sweet story. I’m sorry your brother has these health issues but am so happy to hear you have found a way to be close to your brother because it in.
    Rachel Elizabeth´s last blog post ..“We have come dangerously close to accepting the homeless situation as a problem that we just can’t solve.” – Linda Lingle

  3. 3

    You could possibly undoubtedly visit your commitment inside the work you’re writing. The actual market desires for all the more passionate authors just like you who are not fearful to bring up the way they believe that. All of the time pursue your current coronary heart.