Sunday, November 8, 2009

Someone recently told me...

...that I shouldn't be involved in the whole epilepsy awareness thing. That I need to do something that does not involve Karissa. That I need to move on and get involved in something that is totally unrelated to Karissa and epilepsy. I was quite offended! I didn't even try to explain my intentions or why getting involved in epilepsy awareness and education is quickly becoming a passion for me.

I want to do much, much more than just write about epilepsy on my blog or have family and friends wear a purple ribbon or bracelet to show their support. I want to go out and do something to promote awareness. I want to educate the public about a disease that takes JUST AS MANY LIVES as breast cancer.  I want to be proactive. I want to speak about it, and yes, I love public speaking! I want to help raise funds to help find a cure and better treatment options. I want to encourage others, mostly parents, to fight for what their child needs, and to never settle for what others think is ok for their child.

So, for me, this 'whole epilepsy awareness thing' is not just about Karissa. While everything that I do or will do in the future will be in memory of Karissa, it goes way beyond that. I hope that no one ever has to go through what Mark and I have been through. Sadly though, more people will die from epilepsy.  And, my heart aches to know that another mom and dad will lose a child to epilepsy.

That is why I am trying to be more involved in this cause. I want to contribute to finding a cure so that maybe one day, we can say that 49,000 deaths were lost to the disease instead of 50,000. I want to educate people about the seriousness of this disease. I want children to receive services that are needed to help them thrive and have a better quality of life. I don't want another parent to ever be told that their child is being denied services because they only have epilepsy (see post "Services Denied. Epilepsy Not a Qualifying Condition). It begins with education and awareness. That is why this is so important to me. I know Karissa would be very proud!


  1. I'm glad you're doing what you're doing. I think your voice is well heard because you know and understand well (too well) what you're talking about. I'm sure the person who said what they said was thinking of you and meant well but I think they missed it...I don't think it's an issue of doing something outside epilepsy awareness....maybe in addition to it possibly?

  2. I think it's great what you're doing to raise epilepsy awareness! I think people listen more when it's coming from someone that's been there and have passion and conviction in their voice.
    I agree with Melody. The person probably meant well, but maybe didn't phrase their comment as tactifully as they could have.
    Keep up what you're doing! It will make a difference! Love you, girl!

  3. Thank you ladies for your very encouraging words!!! Love you too!