“Retarded or World Changer? You Decide……”

I have spent the last few days recovering from my trip to the American Epilepsy Society Annual Meeting.  This year it was held in San Diego.   I was gone for 5 days and it was FILLED with lots of meetings and lectures.  We had our first board meeting for My Epilepsy Story.  It was so exciting to see my board members together for the first time.  We have a great group of people serving on the board who want to change the lives of women and children living with epilepsy.  Make sure you check out the website and look under board members to see who we have now!

I had the opportunity to catch up with the other Vision 20/20 members that have non profits and share our ups and downs for the year.  Of course, we all talked about where our children are in their struggles of being affected by epilepsy.  I was asked about how I was doing with my epilepsy.   I think it gives hope to so many parents that are trying to find answers and seizure freedom for their children.  Everyone wanted to hear about Samuel’s progress and to encourage me to keep sharing our story.  My passion is to speak for the ones that cannot share for themselves.  It was so encouraging to be around everyone.  I had the opportunity to talk with several doctors from across the world and share about my personal epilepsy story.  When talking about Samuel and how the seizure medication that I took during my pregnancy has now affected him, the doctors were very encouraging about continuing to share our story.  I had an interview with Medscape which will be up on the site soon, so stay tuned for that!

In the midst of my busy schedule, I took some time to talk with a friend on the phone.  As we were talking she told me of how someone said that Samuel was “RETARDED”.  As I sat there listening to why “this person”  called my son this, it was basically because this woman doesn’t like me.  I thought to myself she doesn’t even know me or for that matter has ever met my son….My friend just kept saying how she knew that Samuel was smart and that she kept trying to defend him…..I had to get off the phone because I had to get ready for a meeting with  Dr Holmes from Boston (He is the doctor that we participated in the research project for children that were exposed to valproate back in February).  As I was preparing for my meeting, I began to get angry and then cry.  Why would this horrible woman say something in a negative way about my son?  I called my best friend and of course, I cried and cried…..Again the conversation was….”We know this is not true…Samuel is very bright.”  I ended the conversation and headed downstairs to wait for Dr. Holmes.  One of my board members was waiting and we began to talk about my telephone conversation.   Lauren just gave me hug and said I am so sorry that people are so cruel…To be honest, I thought how am I going to make it through this next meeting.  Yet, I found myself sitting with Dr Holmes and Lauren while we talked about the plans for My Epilepsy Story.  We talked about our first meeting back in February for the research project and how far things had come since then.  Lauren had to leave and Dr Holmes and I sat discussing other things in regards to epilepsy.  As we were finishing up, I showed him the website.  He looked at me and said how Samuel was changing things in this world.

After leaving the meeting, I thought of so many of my friends children that have autism, epilepsy, cerebral palsy, down’s syndrome, add/adhd, dravet syndrome, CDLK5, and I could go on….and I thought, these children who people think are “RETARDED” are actually the one’s changing this world!  You see my beautiful boy, at the young age of 9 is changing and impacting people all over this world through his story.   This 40 something year old woman will never impact as many people as Samuel, Harper (www.Hope4Harper.com), Calvin (www.calvinsstory.com), or any other child who is “Different” by the world’s standards.  The “labels” that we give children are… autism, epilepsy, add, adhd, intellectually disabled, touretts, dyslexia, etc….should really be “WORLD CHANGER”.  So the next time you meet a “WORLD CHANGER” give them a hug, high five and tell them THANK YOU for making this world a better place!  I look forward to seeing how many lives they all will touch in 1 year, 6 years, 16 years, 26 years…and beyond…..