My story began in the spring of 2009. The snow had melted, the flowers were blooming, and the sun was once again shining bright. Although the signs of spring outside brought forth hope and cheer, the feeling inside was anything but. My then four-year-old lay on the couch, drained of energy and holding his head. He had been lethargic and complaining of headaches for several days. Over the counter medications were not alleviating the pain. A trip to the pediatrician yielded no diagnosis. Shortly thereafter, Ben sat at the dinner table, put his spoon on the plate and fell forward. I called his name, but got no response. I lifted him and saw that his eyes were rolled back and all color was drained from his face. I called the pediatrician and said that I believed my son had suffered a seizure. After a sleepless night, we returned to the pediatrician who immediately concluded that he was not himself. This prompted a trip to the emergency room at Children’s Hospital. After a CT scan produced normal results, we returned home. The following week we returned to Children’s Hospital for a scheduled MRI and EEG. The technician who performed the EEG told me that if we did not receive a call within two days, we were to assume that all tests were clear. We sat on pins and needles for two days and Ben seemed to be doing well, until the following morning. Holding his head, he said, “Mommy, my head hurts bad.” Knowing something was not right, but not wanting to believe it, I called Children’s Hospital. Unable to reach someone directly, I called the pediatrician and said that even though the tests were apparently clear, something was still not right. She told me to remain calm and that she would get back in touch with me. Within minutes, the phone rang and she said that unfortunately the technician had spoken out of turn. The MRI was clear but the EEG showed that Ben has generalized seizure disorder. The beautiful spring day had turned into the dark depths of an unyielding winter.
In that moment and for several weeks after, I felt pain in my heart that I had never known. To know that your child is not well is frightening, but to also have a frightening diagnosis attached to it is downright heart wrenching. After we met with the neurologist and educating myself on the disorder, the pain in my heart was once again replaced with hope. After finding the right medications for Ben, our little boy returned and he has been seizure free. Ben takes his medication twice daily, has blood tests and sees his neurologist every four months. It is now early spring in 2011 and Ben is a happy and healthy six-year-old. The snow is melting, the flowers are beginning to bloom, and the sun is once again shining bright.
We are extremely lucky that Ben’s epilepsy is under control with minimal impact on his and our daily activities. Other families have not been as lucky and for them, the disorder has literally taken over not only the life of the affected loved one, but that of the entire family. For these families, every day is a struggle. It is for the lucky ones like Ben and for the not-so-lucky ones that I urge you to open your hearts, your minds, and your wallets. No child should have to experience a seizure and its serious ill effects, be it one or multiple, and no parent should have to watch helplessly the sufferings of a child. In supporting CURE, I believe we will all be a positive and meaningful force in the ongoing effort to eliminate epilepsy.
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