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My Sister... Epilepsy and Heartbreak
Tue, 02/17/2015 - 13:03My little sister Irene was born on July 23, 1991. Prior to her third DPT shot, she began exhibiting “subtle episodes of eye fluttering” which our parents and pediatrician initially dismissed as normal childhood startles.
When she went to the doctor for the third vaccination, my dad mentioned the eyefluttering episodes. The doctor witnessed some of them, but said they were a normal response to Irene's environmental stimuli. The next morning marked the beginning of partial onset seizures which continued in Irene, along with more pronounced and prolonged myoclonic seizures, in a progressively deteriorating course, characterized by seizures so frequent and sometimes severe that the quality of her life was profoundly diminished.
Recently, my dad attended a conference for Dravet Syndrome. We don't often talk about what happened, though we live with it every day. Recently we went through old photos and my parents and I sat in a closet and cried. Seeing the photos of her as a normal 3-year-old break my heart. She was starting to walk and talk. The seziure that lasted over an hour took all of that away.
This all happened when I was around the age of six. She was in a hospital hours away with my parents and I lived with my Grandma. Until recently, when I recalled this period of my life I thought it had been about a year. My parents told me it was only about four months. I've grown up with a sister who cannot talk, eat, walk and still has hundreds of seziures a day. I've slowly distanced myself from her whether to protect myself or simply because I haven't found a way to connect. I feel like I am a terrible person. I hate myself for it, but any time I talk to her I break down and cry. I have seen many therapists in the past five years and the last one I saw thought I had some sort of PTSD. I've grown up with depression and anxiety. I feel like it's too late now to do anything. I know she will always be like this and I feel so powerless and upset she lost everything. I am now 26 years old and she is 23. She lives with my parents and they have nurses at the house most of the day. It's still hard for me to go say hi. I see her lying there in the hospital bed in our house and my body begins to go into panic attack mode. I am awful.
I don't know if I'm asking for advice or reaching out for some sort of hope or connection.
Thank you (mereloaded) for
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