In school and my epilepsy

I had my first real epileptic seizure when I was 5 years old. My mother says my eyes were rolling and I was staring off into the distance. She was terrified. What do I remember from then now is nothing but stories I hear.

What I had is called a “petit mal” seizure or an “absence” seizure. It’s called that because there’s a lapse in conscious activity for a couple of seconds. It’s different from a “grand mal” seizure, when people have convulsions. That’s what most people think of when they think of epilepsy. A petit mal seizure may not sound like much, but it’s still dangerous because you can drown or have some other kind of accident in those few seconds. But my epilepsy hasn’t really stopped me from doing things. I’m in high school at a public school. Most kids at my school don’t even know I have epilepsy — you know, I dress normally and act normally. I’m an honor student at my high school; I have a 3.48 grade point average. I’ve been playing soccer for five years, and I bowled on a team for three years. I’m a Girl Scout, and I volunteer for the Red Cross as well as for a drug abuse prevention program. After I graduate from high school, I want to go to college to become either a forensic investigator or a lawyer. There are days I want to hide in a bathroom stall let nobody see my siezures or anything because I want to be the “normal” average teenager. I then look around and remember nobody is normal cuss normal not a robot. Everyone is different and nobody is the same. Siezures are a part of me and I have nothing to hide everyone else has to accept all of me or don’t say you accept me if you can’t handle my siezures cuss that is apart of me. It’s like the saying goes “If you can’t take me at my worst then u can’t have me at my best”.

I don’t think epilepsy has to stop me from doing what I want with my life. I used to be afraid to tell people about my epilepsy, but after having a seizure at school in middle school, I realized that people needed to know, that I needed to share safety tips with them. They need the information just as much as I needed the information.

So if there are other kids out there who have epilepsy, here’s what I want them to know: “Don’t be worried about what others may say about you,” and “You’re not the only one who has epilepsy and epilepsy doesn’t have you”.

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Lifetime

We look at the pictures and cling to the memories. The giggling green eyed with red hair boy wrapped in a bundle of joy. The day he came home what a day that joyous day did bring. The family all gathered streamers and presents and food. So many diapers and changes of clothes now all unused and gathering dust as we can barely walk into a room that use to bring us such joy not brings us to our knees. The long 9 month wait, and we ran all the test told everything was to be just fine, how we to know, how were we to prepare? Tragity hit just all sudden his eyes roll up and he shakes but it doesn’t last more than a few seconds. A few seconds later he sounded like he was crying but the sound and pitch was all over the place as well as him shaking. I tried to sooth him and so did my husband and then we realized he was tense and this wasn’t right we called 911. The longest call and ride I have ever had.

What could ether of us do but wait for the doctors to do what doctors did best. Treat our son. We waited in the waiting room full of hope and not of any patience. Finally we were told we could go see our bundle of joy. What shocked us as we ran back to see him wasn’t seeing him but the wires attached and how suddenly he slept till all sudden another struck. How helpless we were and to us the doctors just it was a few needs and looking at a computer. So upset we were, how could u just barely do anything, do more your payed so much so help our boy. We demanded they did more, so enraged they seemed to do so little, to what we saw. Little did we realize not much can be done to such a small body, a frail young newborn. The doctors where doing all they could, they had ran all the blood work and pushing what meds they could and watching all the brain waves they could but not much more they can. I watched in horror as the last one hit and the last smile my son smiled before his last breath. I held my wife close and we both sat crying wondering if there could have been anything we could have done, to save out 2 week old son. Doctors and nurses helped us thru the process and we now have a better understanding. SUDEP is harsh its real and it can hit anytime and anyone. Going forward now we have had to ask for help and get good counseling because loosing isn’t easy. Its been 6 years and we are now expect our 2nd child its been a long hard road but we are fully aware there is a world beyond our front door. There is medical reasons and answers. There is more than what meets the eye, and seizures can hit about 1-26 people in their lifetime even children who have barely been around long.

HOW TO TELL IF YOUR INFANT IS HAVING SEIZURES!!!!!
The baby may have jerking or stiffening of a leg or an arm that can alternate from side to side.
Or the whole upper body may suddenly jerk forward. Or both legs may jerk up toward the belly with the knees bent.
The baby’s facial expression, breathing, and heart rate may change.
Impairment of responsiveness (which is critical in defining many types of seizures) is difficult to assess in newborns. Parents may suspect that responsiveness is impaired when their voices are unable to attract the newborn’s attention.

Competitive Runner

Katie is a 20-year-old competitive runner from Dublin. Due to an aggressive form of epilepsy, she experiences up to 14 seizures a day. Despite her condition, Katie hasn’t let anything stand in the way of her love for running. With the help of her neurologist, who doubles as her running partner, Katie is never steered off course. With each seizure, she is able to bounce back and keep on going. She has been diagnosed since she was 9 years old, with 2 types. She has gone from a wheelchair to running shoes. Every day can be interesting but every day she picks up her running shoes and lives the day to the fullest. Most the rime she trains alone but for her big races she runs with her neurologist who is also her running partner. She doesn’t let anything get in her way of living life. A great plan put together a support group made of doctors loved ones and a team. A great diet and a exercise plan. Goals set and achieved.

With over 40 different kinds of epilepsy out there its not uncommon for people to be diagnosed with more than one type. For those who have no idea what it is however it is very common for people to assume to call 911 or jump to the worst conclusion of what epilepsy is. The simple word “epilepsy” when googled or just read looks scary. When seen having an Convulsive attack looks SCARY which IT IS but most do not know what to do or how long to wait or anything about it except what it looks like.

Click the Link below Please and watch to know what to do if you witness a seizure and have have the Knowledge of what to do Thank You.

https://youtu.be/XyDHG02phs0

Please continue Sending me your story’s to share with others. Even if you do not think your story is worth sharing you’d be surprised you can inspire. Love to hear from anyone including the friends, doctors, loved ones, anyone from any point of view. Please leave a comment send me a email by pushing the contact button to send me an email. Lets share with the world how Strong we are all together. WE do not know how strong we are until is the only choice we have Epilepsy Awareness.