Sunday, June 29, 2014

Yesterday I took Walt to the pride festival and he decided that he wants to be a drag queen. He even went up to one of the performers and asked when they were performing again, and was disappointed that he can't get into the nightclub until he's 18. But the performer was really nice and told him to start out looking at makeup tutorials on youtube and practicing at home, so now he's already got a shopping list. It was good to get out for a while yesterday, I have a habit of just hiding out here in the house, and then I'm vaguely surprised when going out makes me feel a little better. But today hasn't been so great. The ache in my chest and tightness in my throat won't go away, and my girlchild is the only thing I can think about. I never know what's going to trigger days like this. A song, a smell, a memory, someone mentioning a movie she loved, or one she would have loved and didn't get to see. That's what gets to me over and over again. We just didn't have enough time. And I wasted too much of what we did have. There were so many things I wanted her to see, to share with her, to ask her and tell her and I have to live with knowing that none of it will ever happen. I don't know what her favorite song was the day she died, and I never asked her if she had one memory that stood out as the best moment of her life. It all feels so horrendously unfinished.

Sunday, June 22, 2014

Monday, June 9, 2014

Under all those bandages

I'm sharing this knowing that it will be controversial. That it's graphic. That some people will find it exploitative and distasteful. That's okay. I'm sharing these pictures because I want people to truly understand what Cassie and people like her lived with every day under those clean white bandages that took 20+ hours a week to wrap around her fragile body to protect her from the world. This is why I have to see Black Hat made. This is why I post link after link, this is why I need to share Cassie's story. So one day there is a cure. So no parent ever has to see their child live with this, and no child has to live in this kind of pain for their entire lives. If you click this link, please understand you will see graphic photos of full thickness wounds that resemble second and third degree burns. They are not pretty, but they were Cassie's reality. They are the truth of Epidermolysis Bullosa.

Wound Photos

Wednesday, June 4, 2014

And some say that it loops forever this road that I lose you on every time...

People often tell me that one day it won't hurt quite so much. Or that it'll hurt, but it won't be unbearable. I mostly believe them. But it's hard to function waiting for "one day" to happen. Six months from now, a year, twenty. Who knows when that one day will come. I don't. I know that right now, five months after my daughter's death, there are days where I think I can't stand five more minutes of my life without her. Days where my next breath feels like too much. Moments when I miss her so desperately that I want to yell at whatever powers that be that if this was some kind of test to see how much I could endure, I'm crying uncle.

I can't really think about the future. Not right now. Not until that "one day" happens. I'm only 42 years old. The concept of 30 years of life without Cassie is unbearable. The idea that I could want to live that long hurting this much is unfathomable. So I don't look to far ahead. Lots of days I don't look any further ahead than when I can climb into bed at night and wake up 8 hours closer to the day I don't have to live without her anymore. I know that sounds morbid and horrible, but it's true.

To keep my mind occupied, to give myself a reason to get out of bed every day, I'm trying hard to do things that I know Cassie would want me to do. I'm helping run a raffle for our dear friend Jessica Gray to go on a spiritual retreat to Hawaii. Jessica has been undergoing breast cancer treatment for the last two years, and I know Cassie would have wanted me to help her. She loved Jessica like another mother. Jessica officiated her memorial service, was her mentor and teacher and Cassie loved her dearly. I do too. She brought a lot of magic and glitter and happiness into my little girl's life, and she's been a rock for me when she's going through so much herself. I'm grateful to have such incredible friends. If anyone reading this would like to know more and purchase a raffle ticket, you can read Jessica's blog here: Transformer of Poisons and you can purchase a raffle ticket or donate here: Support Jessica.

I'm new to this fundraising thing. But I know I want to do things in my daughter's name that I know would have made her happy. I want to do what I can to brighten lives in her memory, so that her name is forever associated with kindness and generosity. Thank you for helping me do that. Thank you for helping me get through the days.