The best way to increase awareness for Epilepsy is by sharing our personal experiences with seizures. This blog has been my ongoing therapy now for over 9 years. I am reminded each and every day that by sharing this experience, I am helping others. Thank you to readers Renee and Ashlyn for saying "Hello" to Jenelle and I at CHOC yesterday. You made my day!
Two weeks ago, I walked in the Children's Hospital of Orange County "Walk in the Park" at Disneyland (CHOC Walk) with many beautiful collegiates from Tri Delta sorority at Chapman University. I had planned to take Jenelle with me, but alas, the seizure monster woke her in the middle of the night with a nasty long seizure, and I didn't have the heart to put her through a 5 AM wake up call.
During the walk, I met the mother of one of the girls from Chapman. She knew about Jenelle, and as we were walking and talking, she asked me if the CHOC walk was emotional for me. Honestly, it was very emotional the first time we walked, but I've long passed the stage of grief for Jenelle's condition. In fact, that crisis seems like forever ago and I barely remember the stinging anniversaries anymore. Instead, I celebrate the joy I see when Jenelle achieves new ground and reaches new milestones. Just as I celebrate the accomplishments of Jack, our "normal" child. Our life doesn't even feel like a "new normal" anymore because it is simply normal.
A family member mentioned on Jenelle's birthday recently that she was one year away from doubling her life expectancy. And that is an amazing accomplishment in itself. Yet still, we are fighting seizures, and looking for that next new medication, and hoping that we can keep her seizures under control so she can continue to thrive and learn new things.
You should expect this by now; each and every November I will remind you that it is National Epilepsy Awareness month. I will ask you to wear purple, the color for epilepsy, and for you to educate yourself about seizure types, seizure first aid, and ways that you can help out our epilepsy community. But the most important request I will make is that you talk about epilepsy! Help us spread the word so we can extinguish stigma and better educate our communities on how to help those affected by epilepsy.
Greg Grunberg is an actor with a child who suffers from epilepsy. He has graciously taken his family story to the next level, and created a website charity called Talk About It to help educate the public about Epilepsy. It also helps that he has pulled in his celebrity friends to deliver the message on the Talk About It website. Check it out - it has some fantastic videos. Thank you Greg for all you've done to advocate for our kids!
Below is a video of an interview he gave a few years ago in Washington, before the Epilepsy Foundation National Epilepsy Walk. Besides giving you a glimpse of how epilepsy has affected his son, he really points out the important things like getting to the right doctors, finding the right treatment and being open about the condition. Enjoy!