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
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.
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.
Wednesday, May 28, 2014
Black Hat: The Film
"Desperate to get to an anime convention halfway across the country, a quirky teen artist “borrows” her sister’s car, kidnaps her wily, black sheep grandfather and together they embark on the road trip of a lifetime."
This is the official description of Black Hat, the movie that writer/director Robbie Bryan is making. But to me, Black Hat has another description; Cassie's legacy.
Let me tell you a few things about my daughter. Virtually every other parent of a child with EB or person with EB can tell this story. School administrators who don't understand and want to put your cognitively normal child in special education classes. Peers who won't sit next to them in class. People who talk to your teenager like they are five, because they are smaller than average and are in a wheelchair. People who won't shake their hands, are afraid to touch them. Salons that won't cut their hair because they might be contagious. Restaurants that ask you to leave. And on, and on. It's a painful story of shunning those we don't understand, of assumptions and fear over education and love.
But my Cassie, my beautiful, brave girl, had a level of self assurance and self confidence that I often envied. Cassie wasn't brave because she lived with EB; that's just how the dice rolled for her. She was brave because she refused to be treated differently, she loved who and what she loved and was completely unapologetic about it. She was herself, always. She bowed to no one, and never compromised her beliefs or passions to conform. She shunned normal. She embraced her identity as an "otaku", a fan of Japanese animation and culture.
Through this love of anime, Cassie found her tribe, the people that would love and accept her exactly as she was. They were the outsiders, the odd ones. The nerds, the geeks, the kids who sat alone at lunch, the kids even their parents didn't quite understand. They dreamed of transformation, of worlds where the fantastic happened, they built elaborate, lovingly detailed costumes of these characters they idolized and wore them to conventions where they could all live in this world together for a few days. Accepted, embraced, understood. And Cassie loved it. She found her calling in this world of anime and cosplay when she was not even 10 years old.
This is the official description of Black Hat, the movie that writer/director Robbie Bryan is making. But to me, Black Hat has another description; Cassie's legacy.
Let me tell you a few things about my daughter. Virtually every other parent of a child with EB or person with EB can tell this story. School administrators who don't understand and want to put your cognitively normal child in special education classes. Peers who won't sit next to them in class. People who talk to your teenager like they are five, because they are smaller than average and are in a wheelchair. People who won't shake their hands, are afraid to touch them. Salons that won't cut their hair because they might be contagious. Restaurants that ask you to leave. And on, and on. It's a painful story of shunning those we don't understand, of assumptions and fear over education and love.
But my Cassie, my beautiful, brave girl, had a level of self assurance and self confidence that I often envied. Cassie wasn't brave because she lived with EB; that's just how the dice rolled for her. She was brave because she refused to be treated differently, she loved who and what she loved and was completely unapologetic about it. She was herself, always. She bowed to no one, and never compromised her beliefs or passions to conform. She shunned normal. She embraced her identity as an "otaku", a fan of Japanese animation and culture.
Through this love of anime, Cassie found her tribe, the people that would love and accept her exactly as she was. They were the outsiders, the odd ones. The nerds, the geeks, the kids who sat alone at lunch, the kids even their parents didn't quite understand. They dreamed of transformation, of worlds where the fantastic happened, they built elaborate, lovingly detailed costumes of these characters they idolized and wore them to conventions where they could all live in this world together for a few days. Accepted, embraced, understood. And Cassie loved it. She found her calling in this world of anime and cosplay when she was not even 10 years old.
Cassie at Con-Nooga, age 10
And this love was not just a passing fancy. Cassie continued to love anime and cosplay with an unrelenting passion through her entire life. We attended anime days at the library, MechaCon, Louisianime, Comicon. She collected figurines and mangas and even as EB stole her fingers, curling them down into stumps, she drew hundreds of pictures in the anime style, especially her beloved "magical schoolgirls" and her goddess, her idol, Miku Hatsune. She dreamed, in a world where she was as healthy as she was intelligent and tenacious, that she would go to Japan and attend art school, that she would draw mangas that would earn her the money to open an animal sanctuary.
So knowing these things about Cassie, imagine how I felt when days after her death I met Robbie Bryan through a mutual friend on facebook. Robbie, who just happened to have this script about an "otaku", a girl so much like my Cassie, who loved anime, who was ostracized for looking "different", who wanted to create art and be proud to be herself. It was almost enough to make me believe some larger force put him in my path. I knew, down to the bottom of my being, that Robbie was offering me the opportunity to share Cassie's story, Cassie's life, and have it not just be about her disorder, and about her pain and suffering. Not just this fragile little butterfly girl. That was only one part of Cassie's identity. Through Black Hat, I could share the things Cassie loved; her passions and dreams, her confidence and spirit. Not just her afflictions.
So for me, this movie is not about Cassie's disorder, it's about her identity. About how I want her to be remembered. Not as a sick little girl. But as a girl who called herself a gamer chick, an otaku, who was proud be be called a geek and a nerd. The girl with pink hair, the girl who told me "Dai suki" or "Aishiteru" at bedtime instead of "I love you". My girl, who I am so incredibly proud of, who I owe a great deal more than allowing her to only be remembered as the little girl with EB. This movie will allow her to be remembered for the things SHE chose, that SHE loved, the identity SHE embraced, not just for the genes handed down to her by her parents. Because Cassie was never a victim of her DNA. She wrenched her identity, her self worth from the mangled hands of EB and never let it be taken from her. And I think the world just might deserve to know what an amazing young woman she was because of that.
Saturday, May 10, 2014
Behind the curtain
This will probably be the hardest thing I have ever written in my entire life, second to sharing the news of Cassie's death. It's hard because my friends have so much faith in me, and have told me over and over again that they know I'm strong enough to get through this, that I'm handling it so well, that they're proud of me.
I want to preface this by emphatically stating that I am not suicidal and have no intention of harming myself.
But I have fallen into the deepest, darkest pit of depression that I have ever experienced. I am on medication. I am getting what help I can given my lack of insurance. I will not harm myself. But I have a lot of trouble caring enough to get out of bed every day, to eat, to interact with people. I have anxiety attacks when the phone rings. I have a lot of trouble even forcing myself to drive a couple of miles to the store when we're out of milk and toilet paper. I am not really a functional human being at this point. I think of Cassie literally every waking moment. I have replayed the moments of her death in my mind thousands of times. I cannot force the images from my mind. The only respite I get is sleep. So I sleep. 12, 14, 16 hours a day sometimes. I am not parenting my son as I know he needs. After paying off Cassie's cremation, medical bills, all of our overdue utilities, expenses for the memorial service, and then moving, while feeding a growing teenage boy, I am completely broke. I should be looking for a job, but I can barely make myself shower. I have been informed, as gently as possible, that the horrible condition of my broken and discolored teeth is going to be an impediment to my finding professional employment. I haven't had a job in 18 years. I can't leave Walt alone for more than a couple of hours at a time because he can't remember not to microwave silverware and not to leave the house when I'm not here.
I had big plans that I would be able to travel to Canada this summer so that Marcia and I could get married. That's not going to happen, for financial reasons.
This time last year I had four loud, silly, wonderful teenagers under my roof. My foster child went to live with his grandparents, my nephew went home to his mom, and Cassie is gone. Walt still needs me but not in the way that Cassie did. While that's probably a good thing, it leaves me feeling useless. The only thing I've ever been any good at, taking care of children, my children, I'm no longer needed for. I feel completely adrift, like my entire reason for existing is gone. And I don't have the energy to fight to make things better. I just want to sleep, because that's the only time that everything doesn't hurt.
I want to preface this by emphatically stating that I am not suicidal and have no intention of harming myself.
But I have fallen into the deepest, darkest pit of depression that I have ever experienced. I am on medication. I am getting what help I can given my lack of insurance. I will not harm myself. But I have a lot of trouble caring enough to get out of bed every day, to eat, to interact with people. I have anxiety attacks when the phone rings. I have a lot of trouble even forcing myself to drive a couple of miles to the store when we're out of milk and toilet paper. I am not really a functional human being at this point. I think of Cassie literally every waking moment. I have replayed the moments of her death in my mind thousands of times. I cannot force the images from my mind. The only respite I get is sleep. So I sleep. 12, 14, 16 hours a day sometimes. I am not parenting my son as I know he needs. After paying off Cassie's cremation, medical bills, all of our overdue utilities, expenses for the memorial service, and then moving, while feeding a growing teenage boy, I am completely broke. I should be looking for a job, but I can barely make myself shower. I have been informed, as gently as possible, that the horrible condition of my broken and discolored teeth is going to be an impediment to my finding professional employment. I haven't had a job in 18 years. I can't leave Walt alone for more than a couple of hours at a time because he can't remember not to microwave silverware and not to leave the house when I'm not here.
I had big plans that I would be able to travel to Canada this summer so that Marcia and I could get married. That's not going to happen, for financial reasons.
This time last year I had four loud, silly, wonderful teenagers under my roof. My foster child went to live with his grandparents, my nephew went home to his mom, and Cassie is gone. Walt still needs me but not in the way that Cassie did. While that's probably a good thing, it leaves me feeling useless. The only thing I've ever been any good at, taking care of children, my children, I'm no longer needed for. I feel completely adrift, like my entire reason for existing is gone. And I don't have the energy to fight to make things better. I just want to sleep, because that's the only time that everything doesn't hurt.
Friday, April 4, 2014
How every single word you spoke echoes in me like a memory of hope
My precious baby girl,
It's been almost three months since you died and it's no easier to accept than it was the moment you died. I knew your entire life that I would lose you someday, but it never felt real. I never accepted that. It was just as shocking that you died as if you'd been perfectly healthy and should have lived a hundred years. I miss you more with every day that passes. It doesn't get easier, it gets harder. Because I just miss you more the longer I go without seeing your sweet face or hearing your voice, kissing your cheeks and hearing you laugh.
With you gone it becomes more and more apparent how every aspect of my life was about you, because without you, Cassie, it is so very empty. I am empty. You were my purpose and my reason. I look now for a new sense of purpose and it's so hard to do when it all seems so unimportant. I keep getting up every day and functioning because I know you would want me to. I wouldn't want to disappoint you.
It's been almost three months since you died and it's no easier to accept than it was the moment you died. I knew your entire life that I would lose you someday, but it never felt real. I never accepted that. It was just as shocking that you died as if you'd been perfectly healthy and should have lived a hundred years. I miss you more with every day that passes. It doesn't get easier, it gets harder. Because I just miss you more the longer I go without seeing your sweet face or hearing your voice, kissing your cheeks and hearing you laugh.
With you gone it becomes more and more apparent how every aspect of my life was about you, because without you, Cassie, it is so very empty. I am empty. You were my purpose and my reason. I look now for a new sense of purpose and it's so hard to do when it all seems so unimportant. I keep getting up every day and functioning because I know you would want me to. I wouldn't want to disappoint you.
Monday, February 24, 2014
I'd Like to Make Myself Believe
It seems that it took roughly six weeks for the soul-numbing shock to wear off, and the tears to start. I'm not much of a crier. I never have been. I barely cried the first month. And now I can't stop. This upsets Walter terribly and he avoids me a lot. It freaks him out that he can be talking about something seemingly innocent and innocuous, and I can't respond without my voice breaking.
Over and over again my mind plays through the few days that lead to her death. I was so sick myself, and felt so sorry for myself that I had to take care of her when I could barely stand up myself. I wonder if I missed something, if I'd sucked it up and done what I needed to, if I'd taken her back to the doctor, gotten more fluids in her, if if if. The thoughts chase themselves around my head morning and night, but they don't bring her back. Nothing is going to bring her back. I go to her room and look at her shelves full of dolls and trinkets and treasures and try to truly comprehend that she'll never play with them again. That the dolls she got for Christmas were barely touched. That I'll never see her sweet face again, or hear her voice. I know that having her here forever wouldn't have been long enough, but 16 years just wasn't enough.
Nearly every minute of my life for the last 17 years was spent caring for her. Now every minute is spent thinking of her and missing her.
In other news, Walt and I have been blessed to find a place to move to that will be more affordable for us now. The sad reality is that with Cassie's death, we also lost her social security benefits, which constituted about a third of our income. In some regards this will be balanced by the out of pocket expenses for her that I won't be paying now, but until I find a secure job, lower rent is a priority.
Finding this place is very good. The timing, needing to move in on April 1st, is hard. I can't say right now if I would ever feel ready, but I can say that the thought of moving is traumatic. Packing up Cassie's room, not being able to go in there every day and sit on her bed, see her bathrobe still hanging on the closet door and her purse on the doorknob. Like she will be home any minute. Of course many of her things will be displayed throughout anywhere I call home, always, but the idea of living in a space where I have no memories of her is hard. We loved this house. It's been good to us. We have a lot of wonderful memories here of sleepovers and parties and holidays. I know those memories will always be a part of me, but right now I want to burrow in and stay in place, but life has other plans for me and the Boy Wonder.
Over and over again my mind plays through the few days that lead to her death. I was so sick myself, and felt so sorry for myself that I had to take care of her when I could barely stand up myself. I wonder if I missed something, if I'd sucked it up and done what I needed to, if I'd taken her back to the doctor, gotten more fluids in her, if if if. The thoughts chase themselves around my head morning and night, but they don't bring her back. Nothing is going to bring her back. I go to her room and look at her shelves full of dolls and trinkets and treasures and try to truly comprehend that she'll never play with them again. That the dolls she got for Christmas were barely touched. That I'll never see her sweet face again, or hear her voice. I know that having her here forever wouldn't have been long enough, but 16 years just wasn't enough.
Nearly every minute of my life for the last 17 years was spent caring for her. Now every minute is spent thinking of her and missing her.
In other news, Walt and I have been blessed to find a place to move to that will be more affordable for us now. The sad reality is that with Cassie's death, we also lost her social security benefits, which constituted about a third of our income. In some regards this will be balanced by the out of pocket expenses for her that I won't be paying now, but until I find a secure job, lower rent is a priority.
Finding this place is very good. The timing, needing to move in on April 1st, is hard. I can't say right now if I would ever feel ready, but I can say that the thought of moving is traumatic. Packing up Cassie's room, not being able to go in there every day and sit on her bed, see her bathrobe still hanging on the closet door and her purse on the doorknob. Like she will be home any minute. Of course many of her things will be displayed throughout anywhere I call home, always, but the idea of living in a space where I have no memories of her is hard. We loved this house. It's been good to us. We have a lot of wonderful memories here of sleepovers and parties and holidays. I know those memories will always be a part of me, but right now I want to burrow in and stay in place, but life has other plans for me and the Boy Wonder.
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