I remember the day like it was yesterday. The day one of my closest high school friends had a seizure sitting next to me in class and I had to catch her before her head hit the floor. I remember the day in 2nd grade when my favorite aunt had a seizure in the hallway standing right next to me and her son. I remember the day my daughter, Maci came home shaken from seeing her friend Abbie have a seizure in class. It’s so traumatic for those of us watching, trying to help, yet feeling so helpless.
My sweet friend, Abbie has agreed to tell us her story as only someone living with Epilepsy can. We recently had a photo shoot to pair art with her words. Stick around til the end for a chance to win a free session or gift card to Mpix prints & gifts for those not in the area!
Kirby, the lovable, huggable brother.
My daughter, Maci tagged along.
Before I got epilepsy I was just like all the other kids and one day my Mom had to call the ambulance because I had a seizure. A seizure can you believe it when I was 7! Now I am 10 and my mom says it has been ___days since I’ve had epilepsy.
It’s okay to have epilepsy it just makes you different and special because nobody else has epilepsy in my family or classroom. Just me and that makes me awesome. Some of the stuff I get to do is cool and if I didn’t even have epilepsy it never would have even happened. I got to go in a helicopter because of epilepsy and go to Johns Hopkins and meet famous doctors, like Dr.Kossoff. I got to play all kinds of games in the helicopter and in the hospital. Also, I got an IV. It was so interesting to watch them put it in my arm. And guess what? It didn’t even bother me, it was just fascinating to see them do that. I am use to needles now and because of my diet I get my blood tested every couple of months and have to have 9 tubes filed. At the hospital they taught me how to swallow pills. I now swallow up to 13 pills a day. Some of them are really big ones! When I got home from the hospital I was having seizures all the time…like 30 or more a day! Now, I only have about 20 or so a month. It’s still a lot but my Mom and Dad and doctors are trying to figure out what to do to get them to stop happening. It’s a lot of things you have to think about.
Did you know where my brother goes when I am in the hospital?
My brother gets to go to my Grammy and Pappy’s house on a vacation when I go to the hospital, even, Amos, my dog goes there too.
When I am going to have a seizure it feels like I get all tingling or like it’s just a feeling I have that it is coming. I don’t know how to explain it. I just lay down on my side and wait, sometimes I don’t move but I can feel the seizure in my head and other times look out because I am going to get crazy wild. My hands, legs, and arms all shake and move. Sometimes I will scream out . I can sometimes hear you or sometimes not. It just all depends when it happens. I usually only have a seizure when I sleep. I did once have it in a store when I was awake, I was so mad because it was like only a minute and when I got up everyone was staring at me…I said I am not crazy! I just have epilepsy! It just makes me so mad about having a seizure because I can’t make it stop. Not even my Mom or Dad can make it stop.
Medicines didn’t work for me so now I am on a special diet, called the Ketogenic diet. I have to eat and drink a lot of fat, heavy cream and meats. My Mom and Dad have to weigh and measure my food so it will stop my seizures. I am not allowed to have any sugar! That is the worst! I really miss eating C-A-N-D-Y and J-U-N-K-F-O-O-D! But I can eat all the salt I want…so that is good. Sometimes my Mom and Dad let me have PowerAde Zero to drink because its on the list of things I can eat and drink. I love that I can have sizzle water and regular water. The sizzle water tastes so good! My favorite food to eat on the diet is soup my mom makes and the chocolate milkshake! I have a secret box where I am keeping things that I am not allowed to eat right now, but when I am off my diet, look out! I am going to eat all the Halloween candy, Easter candy and the IOU’s from birthday cakes and pies in the last 2 years. I can’t use some arts and craft stuff and have to wear purple gloves so my skin doesn’t touch the chemicals or ingredients in the glue and paint and other stuff. At least the diet is helping me to not have so many seizures. Its not as hard as it was when I first started.
Here are ten things I worry about now because I have epilepsy:
- When I get nervous about staying at someone’s house because I might have a seizure. I have never had a sleepover at someone’s house.
- I hope my seizures go away because I really want to drive a car when I am older.
- I really don’t like it when I have a seizure in school. It makes my friends worry about me and I just want them to think I am just like them.
- I am scared to grew up and go to college because what if I have a seizure in college!
- If I get nervous about school or a test sometimes it makes me have more seizures.
- I can go swimming, but someone has to be right next to me or really close because I don’t want to have a seizure in the pool and drown.
- Someone always has to be with me! Even to walk me to the bathroom at school. It makes me feel like a baby not a 4th grader!
- I have to have a baby monitor so my mom and dad or Miss Ashlie can see me in case I have a seizure at night. A monitor for a baby…I am not a baby!
- What if my friends don’t like me anymore because I have epilepsy. It looks scary when I have a seizure. I don’t want them to be afraid of me.
- What if some people think I am weird because I have seizures! I can’t help it or make it stop and I really, really want to!
If you have any questions about epilepsy you can just call me because I know what it feels like every day to wait for one to happen. (Abbie wanted to put our phone number here for people to call if they wanted!!)
To enter to win a free one hour photography session (for those in the area) or a $50 gift card to Mpix prints & gifts (for those out of the area):
1. Take a photo of yourself or your kids sporitng purple on Monday, March 26th (cell phone or fancy camera…we’re not picky)
2. Text or email the photo along with your name and the State you reside in to: 410-200-5771 or firstname.lastname@example.org
3. “Like” the Karena Dixon Photography page on Facebook (this is NOT a requirement to enter but it sure would be nice of you and it’s where the winner will be announced)
All names will be place in a hat and one winner will be drawn. Check back on Tuesday, March 27th. Hopefully there will be a sea of purple on the blog after I’ve posted all of your fun photos!!!
Let’s show this sweet girl and others living with Epilepsy our support….share this post and break out the purple!
Hugs ~ Karena
UPDATE! Contest winner announced and purple photos submitted supports here.
For more information on Purple Day visit www.purpleday.org