This past week has been extremely busy as I try to prepare things to head to Baltimore, Maryland for the annual American Epilepsy Society meeting in December. Our Facebook page for My Epilepsy Story is moving with lots of stories being added daily. As I read them it makes my heart break to see what people are experiencing. This is an emotional journey that I am on…..without the emotional stories behind it there would be nothing for people to care about.
Yesterday we were getting ready to go to the gym, which the kids love to do, and Samuel was having a hard time putting his tennis shoes on. As he struggled with the shoes, I said you can do it….He looked up at me with that sweet face and said “Jesus made me the wrong way”. I quickly said “You are perfect and don’t believe anything else!” As I helped him put his shoes on, my heart was breaking and I wanted to break down in tears….I wanted to scream out and say “WHY, WHY did this happen to my innocent angel?” , but I knew I needed to keep it inside……
I struggle daily with sharing our story, as it is not easy to share. People are cruel in this world and some look at him and think he was made the wrong way….I have to be thankful in a way, he is realizing that people are seeing him different and he realizes that he is different…..It is a step of progress though a hard step as a mother to see…..
At times I just don’t want to tell people about our story……I just want to sit in the group that is silent about their epilepsy, the group that is responding to treatment, the group I am in…… and live a quiet life….Let people think well that kid is a “little different” and nothing else….but I can’t, I have got to push through the hard stuff and keep going.
As I picked Samuel up from his class at the gym, I saw he was smiling while playing with the “teacher”, as Samuel calls him. Kwab is this WONDERFUL young man that works at the gym in the hang time area for kids while their parents workout. I see how Kwab interacts with all the children and makes sure that they are all having fun. He has been such a great person for Samuel. Kwab makes sure that Samuel is playing with everyone and makes sure he is included….LOVE THAT GUY!!!
I then go to pick up Hannah Kate and David and their workers tell me how Hannah Kate is telling people about epilepsy and seizures. She tells them, “Don’t laugh at someone who is having a seizure, you sit by them and tell them it’s going to be okay…I’m right here with you..” Makes my heart smile…yet I know she has never seen someone have a seizure because I have been seizure free for almost 20 years….
So it makes me wipe my tears away and say “I MUST KEEP GOING…….” Don’t give up, the beginning is always the hardest…..so here we go My Epilepsy Story!