Oct. 30th, 2015

goodnightmoon: Mulder 2 (cassie)
It's been National Epidermolysis Awareness week this week, and I've been entirely silent, though it has overwhelmed my thoughts and my heart. I've been trying to think of what to say. Do I have anything to add, anything that will be helpful, uplifting, that contributes? I don't know.

Tomorrow is Halloween, which was one of Cassie's favorite holidays. As a cosplayer, and a pagan, she adored the sights and sounds, the makeup, the creating her costume and showing it off to others. And oh my, how she loved candly. She's been gone nearly two years now. Some days I am okay. I think of her every day, nearly every minute of every day, and I don't know if that will ever change. But I do have days where the aching throb of missing her doesn't constrict my chest. I have days where I don't think that I won't make it through the day, living with the thought that I'll never hold her in my arms again. But I still have days where I have those thoughts. Where the longing to touch her one more time is a physical pain, right in the center of my chest, right where her head fit when I put my arms around her. Epidermolysis Bullosa took her away from me. It took so much away from her. This disorder that most people go their entire lives and never know about has consumed my life for nearly 19 years. It consumed my child's body, it curtailed the blaze of her light into a a body that couldn't manifest the pure magnificence of her spirit and imagination. I want her back. I'll spend the rest of my life wanting her back, and I'll spend the rest of my life without her, and when I die it'll be with a glad heart for the hope of seeing her once more.

Epidermolysis Bullosa killed my child, as it has killed hundreds before her, and probably a dozen after her. Many of the young people in her age group who grew up together have reached that window of time when EB starts to take them. We are a community of sorrow. We are a community of parents who watch as our children's bodies betray them and then steal them from us. We are islands of grief, as individual as the affects of EB, floating along, missing a child who will never come back. I am on that island, waiting for her.

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goodnightmoon: Mulder 2 (Default)
goodnightmoon

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