One of the most compelling reasons to help Jamie start Angels4Epilepsy aside from the most important of helping to provide comfort to children was to raise awareness. To date, I've had the ability to raise awareness with three of Jamie's teachers since enrollment at her current school. What surprised me was after her diagnosis and subsequently with nearly all conversations surrounding her condition with strangers is the assertion of the other person personally knowing someone who has or had epilepsy. Given that, I am surprised that out of all three of her teachers, no one proclaimed to have had experience with children with epilepsy.
Something about epilepsy is that not all types of epilepsy are the same. Children will have different types of epilepsy and seizure. When it comes to epilepsy, there are various trigger points that cause a seizure. For Jamie, they can be lack of sleep, lack of food and drink, stress and over exertion. I don't know if it's coincidental or not, but it seems to me that she responds well to Smart Water. I've been fortunate that each teacher have been accommodating with my requests to watch for signs of tiredness, hunger and thirst. The hunger part is a little tricker because it's imperative she eats her lunch but that is rarely achieved and I can definitely tell the difference when she has ate versus not.
Jamie also has developmental issue in that she needs more 1:1 attention and requires more time to finish her assignments. In spite of my repeated concerns, I'm told she does not require any special classes to be switched too. I have to admit this creates great anxiety for me in trying to figure out what else I can do to help her. It also creates stress in Jamie as she goes tire of doing so much work and she is frustrated that she's never the first to finish. Through it all, she's a trooper though and never has asked "why me" on the epilepsy front. This past January, she was also diagnosed with pediatric migraines and insomnia.
The migraines seem to hit her at least twice a month and they usually result in vomiting. The insomnia causes sleep walking conditions so there is always a fear to let her sleep alone.
I reflect back on her condition and realize that she is turning a negative into a positive in what she is wanting to do with helping other children with her Angels4Epilepsy project. I know I'm setting the foundation but in time, she will take more of a lead and she has many, many ideas yet to come!
Jamie is a creative, thoughtful, funny and giving person among many other wonderful attributes. She is a good older sister to her three year old sister who has her own chronic medical conditions.
If your child has epilepsy, do not be afraid to request special provisions for your child if they attend school.
