goodnightmoon: Mulder 2 (cassie)
[personal profile] goodnightmoon
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.

From:
Anonymous( )Anonymous This account has disabled anonymous posting.
OpenID( )OpenID You can comment on this post while signed in with an account from many other sites, once you have confirmed your email address. Sign in using OpenID.
User
Account name:
Password:
If you don't have an account you can create one now.
Subject:
HTML doesn't work in the subject.

Message:

 
Notice: This account is set to log the IP addresses of everyone who comments.
Links will be displayed as unclickable URLs to help prevent spam.

Profile

goodnightmoon: Mulder 2 (Default)
goodnightmoon

June 2017

S M T W T F S
    123
45678910
11121314151617
18192021222324
252627282930 

Most Popular Tags

Style Credit

Expand Cut Tags

No cut tags