Well we arrived in Boston on Friday evening. I am so fortunate to have my best friend accompany me with her son on this trip. It has been great to see Samuel bond with another child and learn from his example. As I sit here this evening processing the events of the testing, I am breathing…. I have told you before that I couldn’t breathe at times because of the fact that MY seizure medication contributed to Samuel’s language disorder. I have learned that things don’t happen by accident. There are reasons for the way things turn out in life. I am fortunate to be able to have a beautiful and wonderful son that has a language disorder. I am the blessed one because I now see things in a different way.
We took the subway today and watching Samuel as he rode that subway was AWESOME! I saw the smile on his face as he took it all in for the first time…..His eyes were full of excitement and fear…He did a wonderful job! He LOVED every moment and I LOVED watching every moment! You see all these things that he is doing and experiencing are so wonderful to see through his eyes. He is learning to live and so am I. I am learning to live through all of the heartache and pain. I am learning to live through all the testing…. I am learning to share our story with the world but most of all to share Samuel with the world!
On another note, I have been able to meet so many wonderful people here in Boston. We had the wonderful opportunity meet with Dr. Margaret Bauman. She did some testing with Samuel and we will get the results in the next few weeks. I sat in an observation room and watched from behind the glass as they tested Samuel. I so wanted to run in the room when he didn’t answer the questions they asked him….and ask him the questions so that way he would be comfortable and answer. A very important person told me “Just breathe..and don’t go in the room when they are testing him.” As I sat there as this helpless mother, watching my beautiful son struggle with his expressive language, all I could do was breathe… I am reminded of that song by Mary J Blige, “The Living Proof”…. This will be a long, long journey, an uphill climb…but I am ready to carry on. We can start living now….. Our pain and heartache will not stop us from breathing.
I also received GREAT news today…. I am headed to Atlanta to meet with some great neurologists at Emory and also the CDC! I couldn’t contain myself when I received the final confirmation today… I know that our personal story has pushed me to further the cause of epilepsy. We will share the importance of epilepsy research and the importance of having personal epilepsy stories showcased! I am passionate about woman’s health issues and will begin to focus on this area. My journey and story is not going to be one of sorrow, but it will be about strength, courage and change. Epilepsy will not define me…..Samuel’s language disorder will not define him…. We will use our strength and courage to CHANGE THIS WORLD!