Hey guys, my name is Max and was born and raised in Chicago, IL.
My epilepsy… It all started in 6th grade. This is when my teachers and family noticed that I would not always respond or forget what we were […]
EpilepsyUni wrote a new post, How Schools Can Better Prepare For Students With Epilepsy, on the site EpilepsyU 5 hours, 1 minute ago
Starting school is always an emotional experience. As the mother of a child with epilepsy, it is terrifying!
My daughter Journey is a clever, beautiful, 11 year old girl who loves life and all it has to offer. She loves to make people laugh and lives to dance and sing. She loves to swim, climb, swing, and ride her bike.
Journey was diagnosed with epilepsy at five months old. We were fortunate that her seizures became well controlled shortly after her diagnosis. When she was four years old, her seizures changed. They became unpredictable, but relatively mild and infrequent until the age of nine. When Journey entered pre-pubescence, she began to have seizures that caused her to suddenly drop to the ground, creating significant risk to her safety and sometimes resulting in injuries. The seizures became difficult to control. As she got older, with changes to her hormones and continued brain development, the seizures became increasingly unpredictable, changing in their presentation and their triggers, and growing more frequent and intense.
Each new school year, I remember preparing for Journey’s very first year of school. I can’t help thinking about the dread that her dad and I felt as we contemplated kindergarten. Like other parents, we were excited and proud to watch our baby girl reach this milestone. Behind Journey’s crisp new backpack and the pretty new outfit, we were sick with worry about sending our precious little one off into a community that generally doesn’t understand the world our family lives in – the world of uncontrolled seizures.
Ours is a world in which the threats are unpredictable, triggers are inconsistent, and Journey’s personal safety is challenged daily. Average activities like being outside in the sun, engaging in physical games, or even walking down the hall can result in an injury, maybe even an ER visit.
It doesn’t seem to matter how many ‘first days’ of school we have; we continue to worry about Journey’s social and educational experiences. Will there be playdates and birthday parties or will the other kids and their parents be too afraid of the seizures? What will learning look like? Will she be included with her classmates or will she be left out in the name of keeping her safe? Will we be able to find ways to keep her as safe as possible while still allowing her the dignity of reasonable risks and choices?
With so many fears, my husband and I often find ourselves questioning how we’re supposed to send our sweet girl off to an environment that, for her and other children with epilepsy, is filled with danger and risk. Sometimes it feels like it would be much simpler to just keep her at home where we can protect her; place her upon a shelf, like a porcelain doll, safely away from things that could hurt her. But what kind of life is that?
I’m proud to say that we’ve survived six years in the education system, advocating and supporting our school in creating a welcoming, safe, and inclusive learning environment for Journey and other students with epilepsy. This has been a learning experience for all, involving patience, open minds, trust, a strong vision, and effective communication.
By Kimberley Wright, a passionate Epilepsy Mom who advocates with a clear vision of a fully inclusive, vibrant life beyond seizures for her daughter.
My name is Allison Heberlein and I was diagnosed with juvenile myoclonic epilepsy (JME) when I was 16. I had my first grand mal seizure one morning before school during my junior year of high school. I was having […]
How and when did epilepsy first touch my life? What difference does epilepsy make for me, my family, friends and community?
I was first diagnosed with epilepsy at the age of 10, almost 41 years ago…gran mal seizures. I have been so fortunate that I have been seizure free for over 30 years. Still on medication and still dealing with all the side effects, but it works!! The difference for me in dealing with epilepsy, was that as a child there was limited information made available and I would have seizures at school and as the saying goes “kids can be cruel”. And so can adults, this form of hate and bullying is a cycle that must be broken. As an adult, I do become frustrated with this “chronic worsening illness, due to the fact that people do not understand my condition and restrictions, especially as I get older. The sad part is that most chose not to spend the time to become informed. It is so much easier to ignore me than to “have” to deal with me. To me epilepsy is the “invisible disability”. Until you have a seizure (and it should never come to this) you may just seem a little “off” or “un-attentive”or “lazy”. If one does not understand the symptoms of epilepsy, then these observations are made quickly and without hesitation. At work, awhile back, I was told that I didn’t look like an epileptic”. How do you respond to that? Is there a correct answer? And this was from the HR Director of a billion dollar company. Yes, sometimes, I feel as if I will never get away from this stigma. Comments such as these and worse have made me pray with all my might that at least there is no epilepsy in heaven. What is my greatest challenge in living well with epilepsy and how do I successfully meet the challenge? My greatest challenge would have been being a single parent. I raised my daughter, since age 5, by myself. She is 31 and currently married with a wonderful husband and two precious grandchildren which make up her family. She spent six years serving her county, by way of the Air Force. And yes she was deployed, as most have been. She recently obtained her Master’s Degree. Obviously, I am a very proud parent and am so very happy that I had the strength not to listen to those who insisted I never have children. And to answer your question, no she does not have epilepsy. How I meet the challenges. I must say my parents provided the foundation for that. As a child, although protective but not over- protective, they did not treat me differently than my siblings or other children. They said I could do anything and encouraged me to do so. They never made me feel like I had a disability and I have lived that way all of my life. This has enabled me to overcome most of the obstacles that this disease throws ones way. Others are not so fortunate. Their life is filled with unnecessary hardships and pain. I feel that I, alone, could have filled an ocean with my tears that I have shed due to the “E”. Why are the Epilepsy Organizations so very valuable and important to me? The various organizations allow push for EEO laws, provide counsel if warranted, provide medication, job training and much more. There research to find a cure is not only remarkable but unstoppable. But also they are as very important, as they provide a place where individuals, who have epilepsy may meet with one another. It is a great support, as it is a group of friends with common denominators or problems, if you will. It is a sounding board. A community. A lifeline of information. This is where “my people” are if you would. I am not embarrassed here nor do I feel any shame. I am not made to feel stupid or that my life is unworthy. It is a place which I would hate to ever see disappear…unless, just unless..all our hopes come true. And that maybe, just maybe, one day there will be no need for such organizations. Dreaming the dream ~~ please help to find a cure.
My perfectly healthy, extremely athletic son Dezmond’s first seizure was at the age of 15 on June 25, 2010 in the back seat of a car north of Santa Fe, about an hour and a half away from where I was in Albuquerque […]
Seems like just yesterday Bailey was 18 months old..we were at Shands hospital after our very first Tonic-clonic “grand mal” seizure that lasted over 4 1/2 min from the time I saw it! (I was driving and she was […]