As I sit here thinking of the My Epilepsy Story (MES) organization and how far we have come it is bittersweet…. Hearing the voices and stories of women and girls impacted by epilepsy and how their lives are being changed makes my heart fill with joy. Yet, I fully realize that MES would not be here without one little boy’s life that had to be impacted in such a huge way to allow change for women and girls living with epilepsy. This little boy isn’t so little any longer as he is turning 15 years old today. This little boy will always be my “little boy”.… his name is Samuel and he is truly a world changer. Samuel is taller than I am and has the purest heart and the innocence of a little child still today. Without his life, the My Epilepsy Story (MES) organization would not be in existence. Samuel has given me the courage to say the things that need to be said for Women’s Health in epilepsy. His words or at times, lack of words have made me stand up to be the voice for children that have been impacted by the medication their mothers took throughout their pregnancy. Thus, bittersweet is what I call MES… Bittersweet because my son has to endure the hardships of this life to make things better for other women and girls like myself living with epilepsy. It should not have taken one little boy to have autism to change things for women and girls living with epilepsy. Women’s Health needs to be on the forefront of research instead of on the back burner. My husband and I have come to realize that we needed Samuel just as much as he needed us. We needed to see this world in a different way and focus on the important things in life such as family and helping others. We needed to stop and look at the things that we, as well as so many other miss each day. We needed to use our voices to help others. In reality, Samuel is the one who teaches us to use our voices each day. He is truly our gift and constant reminder that regardless of the horrible people in this world there are so many good people here that will work together to help others. He has taught us to focus on the future because we cannot change the past but “the sky is the limit” as my husband always says about our future.
So today as we celebrate Samuel, we celebrate so many things about his life. We celebrate the day he was born, the little boy that struggled to express things through words, the endless hours of therapy, his beautiful eyes that begged for help, his heart that loves endlessly, his passion to help others, his laughter that melts our hearts, and his eyes that allow us to see all the things that we are missing in this world. So today his daddy and I look at this “little boy” and know that his purpose is much greater than we could have ever imagined. With each tear we shed for the life we thought we would have with him, there are just as many tears filled with joy of the life we have with him. Samuel is truly a gift and continues to change the world with his story as well as his life. Happy Birthday Samuel McFadden! We love you very much and are thankful for all that you teach us each day. So I will end this with the song that Samuel used to sing as a little boy and it became my song as I started, My Epilepsy Story… John Mayer song, Say