Welcome November! Although, you have already come on in with a whirlwind and are blowing through much quicker than I appreciate, I do love you. I love the feel of Fall in the air. The excitement as the school year is underway, the thoughts of Christmas right around the corner. And the past couple of years, I love the opportunity to make people aware, as November is Epilepsy awareness month!
Never before have I cared or thought about the color purple. I even quite hated it. I cringed as Addison would beg for purple shirts, shoes and clothes. It had become her favorite color just before the damn beast made an appearance. Foreshadowing? symbolism? maybe.....
Now I can't find enough purple to throw in my closet. I even get my nails painted shades of purple. Today, Veteran's day, I even resorted to literally running down another mom at the boy's school, as she was wearing a ribbon. I thought the deep blue color was actually purple. I stalked her throughout the halls and told her Jake's story, thinking she would have one to share as well....until I learned her "purple" ribbon was actually a blue one honoring the veterans.
I have found I love this month, as I have an excuse to tell stories of Epilepsy, share the facts, the horror's, the unknown and the misinterpreted.
I have said it before and will say it again...Jake was "given" this for a reason. Right now I believe the reason is to educate and inform. I know his case has already had a huge impact on many. This is obvious , by the size of team "All 4 Jake" at the stroll. One of my bestie's , Brandy, has also taken an amazing interest in the cause. You know that she turned a buiding purple, but also has become a mentor for the Epilepsy foundation in Florida, and now is even organizing a stroll in St. Petersburg. Starting from scratch, organizing a city wide stroll for epilepsy.....man that's mind blowing. I don't know if that would have ever happened had we not almost lost our little boy to epilepsy.
Did you know?:
For many soldiers suffering traumatic brain injury on the battlefield, epilepsy will be a long-term consequence.
Epilepsy affects over 3 million Americans of all ages – more than multiple sclerosis, cerebral palsy, muscular dystrophy, and Parkinson’s disease combined. Almost 500 new cases of epilepsy are diagnosed every day in the United States. Epilepsy affects 50,000,000 people worldwide.
It is estimated that up to 50,000 deaths occur annually in the U.S. from status epilepticus (prolonged seizures), Sudden Unexplained Death in Epilepsy (SUDEP), and other seizure-related causes such as drowning and other accidents.
The severe epilepsy syndromes of childhood can cause developmental delay and brain damage, leading to a lifetime of dependency and continually accruing costs—both medical and societal.
In over thirty percent of patients, seizures cannot be controlled with treatment. Uncontrolled seizures may lead to brain damage and death. Many more have only partial control of their seizures.
Epilepsy in America is as common as breast cancer, and takes as many lives.
public and private funding for research lag far behind other neurological afflictions, at $35 a patient (compared, for instance, with $129 for Alzheimer's and $280 for multiple sclerosis)
These are just some of the facts I never knew about the disease "that's easily cured with a simple pill."
Today and everyday, we currently deal, not only with the lingering seizures, but almost more annoyingly the learning difficulties , ADHD, loss of motor skills and never ending anxiety caused by the 100's of seizures a day for months on end that Jake has endured. I was led to believe once the seizures wee gone or even improved..POOF...life is normal again...far from.
Although, I can swear up and down Epilepsy sucks, if Jake was given it to further educate one of you, I will take it.....if we have to.:-)
Become aware...It's not what you think.
When I hear somebody sigh, "Life is hard," I am always tempted to ask, "Compared to what?"
- Sydney J. Harris
Friday Fellowship - Jenna Buettemeyer
23 hours ago