Strength, Courage and Tears…

Over the last few years people have been saying over and over to me, “Brandy you are so strong!” “We don’t see how you do everything that you are doing.” “How do you keep everything together?” These are just a few of the things that have been said to me as I have navigated on this journey of living with epilepsy, being a single mother to three young children, having a son with autism, and starting a non-profit. When I hear these words, “you are so strong”, it almost makes me cringe….. I am really not that strong. I am woman that is trying to balance everything in my life. I am trying to make the most painful thing that has happened to me change this world.

I am a mother that just the other night, held her 10 year old son with autism as he cried uncontrollably for over an hour. Samuel was hurt by another child and was trying to communicate how he felt deep inside his heart. As I held this little boy, who is not so little, my heart was being crushed. As his mother, I could do nothing except say, “Samuel, you are safe and ….. will never hurt you again.” My sweet beautiful boy looked into my eyes and began begging me to fix his heart. I sat there with him on my lap and felt the most helpless feelings anyone could imagine. I had no strength in that moment. I had anger. My anger was toward this girl that hurt him and the people that allowed it to happen to my son. My anger was toward myself for taking a medication that has now caused my son to have autism which causes him to struggle to find the words to express his deep hurt. I watched my two other children try to comfort their older brother. My beautiful six and four year old children have now taken on the job of trying to help their brother find the words that he cannot seem to find. As a mother, I find comfort in knowing that they love each other so much. The three children have a bond like no other…….

As I sat there comforting Samuel, I was reminded of a phone conversation earlier in the day with a friend. She was telling me how strong I was and that she didn’t see how I did it all. I just sat there holding my son thinking, I am not that strong. My mind then began to think of what can I do to help Samuel. How can I continue to help him get past this hurt? How can I continue to help him find the words that he needs? How do I explain to my other two children everything that Samuel is dealing with? How do I not let these situations steal my life and joy? How do I find justice for my son? Is there another doctor or treatment out there for Samuel? I then began thinking of one of my friends named Jill. Jill’s daughter Haley has epilepsy and she is not seizure free. Jill just shared her story with My Epilepsy Story recently and we have had heart wrenching conversations about the seizures that Haley is having. In fact, when I travelled to Boston this last time Jill and I were going to meet but we could not because Haley’s seizure were so out of control she was admitted to the hospital. In those moments of watching Samuel struggling to find the words to express his feelings the faces of so many children began to come to my mind…..As Samuel calmed down and began to settle back into his routine, I sat on the couch and thought that was a nightmare.

I began thinking of my friend, Christy.  Christy is one of the most open and honest people I know. Her transparency has given me the encouragement to share the raw emotions that so many people hide. Christy sent me a video of her son Calvin having a seizure so that we could use it for the organization. As I watched the video of Calvin’s seizure, I listened to Christy’s voice in the background. This strong woman began to become weak as she watched her beautiful son gasp for air while having a seizure. Then I thought of my friend Penny and her daughter Harper.  Penny and I have become friends and shared so many things. Our bond is like no other. She pushes me to keep going with the organization in my moments of doubt. I have listened to my sweet friend cry as she talks about Harper and her uncontrolled seizures. Penny is strong but her heart bleeds for her child as well. My next thought was my friend, Heather. Heather has fought to find seizure freedom for her son Zaki. Heather’s courage to go against the grain has always inspired me. Our conversations have not been as frequent as they used to be because of our schedules but when we do talk it is like time has not passed. My moments of weakness and pure exhaustion from the days of when I used to homeschool Samuel and Heather’s saying “I am right there with you”, still come to mind. Then one of my other amazing friends, Lisa, came to mind.  Lisa is the mother of Evan. Evan has epilepsy and TS. I have had the privilege of forming a friendship with Lisa from when I first shared our story in a public forum in Washington, D.C. We have had meals together, laughs, tears, and long conversations as we both strive to make a difference in this world with our sons being in the spotlight as we try to “hold it all together” and have our son’s stories shared for others to see. So, as I sat on the couch watching my son return to playing with his siblings, I thought of my friends that are watching their children fight their struggles with epilepsy. I am able to relate to them not as a parent with a child with epilepsy but as a parent that their child has been impacted by epilepsy.

I am a woman with epilepsy just like my friends Jessica and Gatewood. We are just trying to make an impact on the lives of others that are diagnosed with epilepsy. After the children were snug and warm in their beds, the tears came…. My moment of weakness was exposed. I am just a girl, nothing special, just a girl who can be strong at times but is also weak. My best friend was there to love on me and let me be weak. My strength and courage was gone….. I am weak……. I am blessed to have my best friend sit with me and allow me to be myself and share one of the most intimate moments with them, weakness. I am also thankful for my girlfriends that I wrote about. They too have strength, courage, and tears….. I look forward to seeing where all this strength, courage and tears will lead us to in 1 year, 6 years, 16 years, 26 years, and beyond.

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