What I Got Wrong About My Daughter's Epilepsy Diagnosis
Epilepsy, you cannot have my daughter.
There, I said it. For so long, I feared you and all that you mean. You came into my world with a bang, turning my funny, adventurous, outgoing 8-year-old into a helpless child who had to be put into a coma. You rocked our world in 2010 and at the time, I would only say Jordan had a seizure disorder.
Epilepsy, you thought you could steal her from us but you couldn’t. Slowly she learned to walk, talk, eat and laugh again. Her brain was winning the battle you set against her and she was thriving. For 2 years, she fought you fearlessly, never letting you stop her. Then the seizures struck again and my world was rocked all over.
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My fears started to take over: Epilepsy means she will never be able to do anything. Epilepsy means she will be deficient in some way. You will take her hopes and dreams and leave us with a withering child that we don’t know what to do with. See how you play mind games with me? See how you get into my brain as well? It was my fear of Epilepsy that caused all this anguish in me. My fear that made me crazy every day she went to school or was alone in her room.
Now I have learned to not fear you. Jordan has shown me that no matter what Epilepsy throws at her, we will handle it. She is so much stronger because of you. She doesn’t let you hold her back and she never will.
Jordan wants to be a neurologist because of Epilepsy and what you did to her. She wants to learn all about Epilepsy so she can help other children like her. She wants to show them that no matter what, you can still get up and keep going. At 13, Jordan is a wonderful advocate speaking at hospitals, colleges and her school about Epilepsy.
Epilepsy, I may still fear you at times, but you will never take my daughter from me. I will not let you have her and she will not go quietly if you try to take her.
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I am a wife, mother, worker and caretaker. In August 2010, my youngest child had a grand mal seizure and was in a medically induced coma for 11 days. Since that day, I have done everything I can to make hospital stays and life better for her and those in her situation.
wendy-franz