Sunday, November 23, 2014

It's very hard to wrap my head around the idea that it's almost Thanksgiving. I remember last year so clearly; listening to Welcome to Nightvale with Cassie on the way to Christina's house for dinner, Cassie thinking there was too much nutmeg in the pumpkin pie, then going to Walgreens to shop for toys for the toy drive the kids did for St. Vincent DePaul. I didn't realize then what a perfect day it was. I didn't know how few we would have left. That less than two months later she'd be gone. I wish I could remember every word she said, every look on her face. What she wore that day. I wish I could hold that day in my hand and stroke it like a kitten and thank it for existing, for the last time that Cassie and I left the house together just to do something fun. Our little shopping trip to Walgreens, where we bought Monster High dolls and makeup sets to give to little girls at the homeless shelter.

 I wish I could hold my baby girl one more time. I miss her so badly. I wish I had had the presence of mind to sing to her as she took her last breaths. It haunts me that I didn't. But all I could do was stutter out a few words through my tears. I hope she didn't sense how sad and afraid I was. I hope all she felt was how much she was loved.

 We're not really doing Thanksgiving this year. Or Christmas. Tyra and I are collecting toys that we're going to donate to the St. Jude affiliate clinic where Cassie was a patient, but that's it. I don't have it in me to pretend I would find any pleasure in the holidays this year. I don't know that I could survive it, much less enjoy it.

 I stay pretty busy with work now, and that keeps me up and moving and functional. It gets me out of bed each day. But I can't say that I'm in a place where I feel pleasure or happiness in my life yet, that I feel any sense of purpose. I get up each day because this muscle in my chest keeps pushing blood through my veins, and the sun wakes me up each day, and so I'll continue to get up and function for as long as that happens. I just can't say when, or if, I'll be glad about it again.

Friday, November 21, 2014

Thursday, November 20, 2014

New Normal-ish

It's been quite a while since I posted. I feel like I don't have the words for what I'm feeling most of them time, so I just don't. I have a job now, Walt has made the decision to transition genders and lives as Tyra now, and is back in public school. The job keeps me busy and keeps my mind occupied, but Cassie is there, every minute of every day. It's hard to believe it's been almost a year since I heard her voice or hugged her. I ache for her. The idea of facing Christmas looms larger every day, and I wonder if I can handle it, or if I'm just going to hide in bed that day.

 We're trying hard to stay positive. We have a couple of events going on to honor Cassie's memory this holiday season, but neither is garnering much attention and I admit that's pretty discouraging. So I'm listing them all here in hopes people will see them and be interested in participating. The first is or "All we want for Christmas is a Cure" t-shirts that Cassie designed herself last year. We have to sell a minimum of 10 for them to print, and we've sold 8 so far. Here is the link if you would like to order one: All we want for Christmas is a Cure

Our next project is collecting Monster High dolls to donate to the St. Jude Affiliate Clinic in Baton Rouge. The took such good care of Cassie, and always had a Monster High doll in their toy closet for her. In December they give christmas gifts to every child who visits the clinic, so we want to help make that possible. We have a wish list of dolls up on Amazon that you can purchase from:Christmas just got Creepy in honor of Cassie England

And last but definitely not least, we have started a Facebook page to try to get more attention for the Black Hat movie. Specifically, to get us on the Ellen Degeneres show to talk about Cassie, EB, and the movie. Please join the page, like, share, and leave lots of comments on the posts. The way facebook works now, "engagement" matters a lot, the more comments and interaction on a post, the more of your followers see the post. Cassie England and Black Hat Anime on the Ellen Show

Thank you all of your support and love. The love of our friends have definitely kept me and Tyra afloat this year as we try to create a new routine, a new life really. We're so grateful for everyone who has been there for us. I know I ask a lot. There are so many things I want to do to honor Cassie's memory. I love you all for standing at my side as I do this. ~Logan

Friday, July 4, 2014

Freaky just got Fabulous

Aside from her friends and family, Cassie had three greats loves in her life: cats, anime, and Monster High. She loved her Monster High collection dearly. They were her friends, her companions, and I can't tell you how many of her days were brightened by packages in the mail containing dolls sent to her as gifts from all over the world. Being able to join the online world of Monster High collectors gave her a great sense of belonging, and she loved to make unboxing and review videos. She also dearly loved to get her friends hooked on Monster High as well. She adored being the first person to give someone their first doll and then sit back and watch them get as hooked as she was on them. I want to continue that tradition, because Monster High is a part of Cassie's legacy. Be yourself, be a monster. Be proud and celebrate who you are. That was Cassie's motto. It's the message of Monster High. I'd like you to meet Bea. She also has Epidermolysis Bullosa, like Cassie did.

That's Bea on the left, dressed as Skellita for halloween. Bea loves Monster High just as much as Cassie did. EB is hard to live with. it's hard to sit on the sidelines and watch other children do things that kids with EB cannot do. It's hard to feel isolated and alone. So I'm asking you all to show Bea the same love that you did for Cassie and send her a doll, or something else off of her Amazon wish list. Let's make Bea's life a little brighter, and spread Cassie's legacy by sharing her joy of the world of Monster High with another little girl who needs it just as much as Cassie did.

Wednesday, July 2, 2014

Sue is taking medical supplies to orphans with EB who desperately need them. Please help if you can.

Tuesday, July 1, 2014

I've been living so long with my pictures of you that I almost believe that the pictures are all I can feel

Tonight I spent some time cleaning out my Amazon browsing history and recommendations. I did this because every time I logged on to Amazon to watch anything on Prime, it shows a list of "recommended for you" products, and mine is always full of Monster High dolls. I'd think about how happy they would have made Cassie and how dearly she loved her dolls, and my heart would break, and I'd want to go burn Mattel to the ground because there shouldn't be any more dolls if my baby girl isn't here to enjoy them. It felt like I was erasing her. It made me sick to my stomach, but so did looking at those pictures of those dolls that will never be on the shelves a bedroom that no long exists for a girl who is no longer here. Same days I imagine I'll survive. This wasn't one of them.

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.

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. 

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.

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.

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.

Friday, February 21, 2014

Ain't No Sunshine When She's Gone

About a week and a half before Cassie died, her friend Dakota asked me, out of the blue, "Mr. Logan, what are you going to do one day when Cassie dies? How are you going to handle it?"

I answered her honestly and replied "It's such a sad, scary, huge thought that my brain can't process it. When I try to imagine life without her one day my mind just goes blank."

And that's where I am. I am blank, and empty, and simultaneously brimming over with a leaden anxiety that sits on my chest like a blanket of bees, waiting to sting if I dare to take a deep breath. Which will get me first, the lack of oxygen or the bees? I don't know. I know that I never could have imagined how much I miss her. Nothing can prepare you for how it feels to lose something, or someone, until they are really gone.

Some days I get up and function. I do what needs to be done. Other days I try to sleep as much as possible because I can't get through a day without her there. The ache is too great. I look in her room, at her bed, and still I can't accept that I will never kiss her forehead again, hear her laugh, I'll never again wake up to hear calling out to me that she needs me. From my bedroom, across the hall from hers, each day when I sat up, I could see her feet. Each day I sit up and look across the hall to that empty bed, and my arms feel so empty. I know everyone tells me that I will manage to cope with this, that it'll become bearable one day. But those days are somewhere on the other side of that blank slate, the endless number of days I have to wake up and feel her absence before I've barely opened my eyes.

Sunday, February 2, 2014

Dreamers only love you when they're Dreaming

Trying to sleep is outright torture. After only sleeping about 3 hours last night, I took a nap this afternoon and dreamed that Cassie was dead, and Marcia and I were supposed to be meeting somewhere to finally get married. I was unclogging a toilet that had overflowed and Cassie's iPad was on the floor getting wet, and as I was trying to save it, Marcia called and asked why I hadn't met her at the airport. She was in Brazil, and I was supposed to be there but hadn't bought a ticket or gotten my passport. I got off the phone and took off my shirt to mop up the mess on the floor and my chest and stomach were covered in huge blisters, so large they were hanging down over the waistband of my pants.

Then I wake up, and reality isn't any better.

Saturday, February 1, 2014

a million minutes of Never

it's incomprehensible to me that I haven't seen my daughter in three weeks. I haven't hugged her, haven't heard her voice. How is the world still turning? It's like being zapped into some alternate universe where only me and a handful of others realize that the apocalypse has happened. That the world has been pulled apart and nothing will ever be the same, but around us life continues to happen, and I am fighting against the stream to get to some place where my heart doesn't hurt every second of every day. I dream about her, she's the first thing I think about when I wake up and the last thing I think about before I go to sleep. I will never see her again in this lifetime. I will never hold her again, I'll never make up for the times I was too busy or too tired to read to her, to watch one of those animes with her that she adored and I couldn't stand. I won't be taking her to Comic Con this weekend to meet Wil Wheaton. Never Never Never. It doesn't feel real. I think if it did, I would lay down and die.

It doesn't matter that I knew for nearly 17 years that I could lose her any day. It doesn't matter that over those years, I saw and experienced the grief of many parents who went before me, losing their own children to this disorder. I cried for them, with them. But in the face of losing my own child nothing prepared me for how utterly empty I would feel, how I would lose not just my daughter but any sense of purpose, of meaning. How everything would feel flat and gray knowing she would never experience any of it again.

I know. I know that EB would have just continued to rob her of her health and she would suffer more, that she was never going to get well. I know that her death was painless, without fear, and that that is a great mercy. I know that she would kick my ass and tell me to celebrate her life instead of grieving her death. I know all of this. I know I still have a wonderful son who needs me and deserves my attention and time. But when I say the hurt is unbearable I meant it literally. Sometimes it hurts so much I just have to go to bed and sleep until I can stand it again, until I can make it a few hours without feeling like I can't go on like this.

People have often commended me and Cassie for how composed and accepting we were in the face of her illness. If I was composed, or believed I was accepting, it's because I didn't truly know how it would feel to hold a notebook full of her unfinished drawings and know they would never be finished. Because never can't be real until you are living it, one minute at a time.

Thursday, January 30, 2014

Black Hat Anime Film to Honor Cassie

Just a few days after Cassie died, I was contacted by a friend who knows a fellow named Robbie Bryan, who is a writer/producer/filmmaker. He's in the process of raising funds to make a film called Black Hat, which is about a girl who is teased and bullied for being a fan of anime and cosplay, and her epic quest to get to an anime convention in Louisiana to meet one of her idols. She had told Robbie all about Cassie, and Robbie was touched by Cass, as all of us are, and wanted to name one of the main characters in the film after her, and fashion her look after our Cass. I was so moved by this sweet gesture. What better way to remember our baby girl, who started cosplaying at age 10, attended her first convention in costume, and couldn't wait to go to Comic Con this year? After conversing with Robbie several times, he invited me to come to Comic Con and talk about Cassie and her role in the film. Though the deadline to get a booth had passed, MechaCon offered to donate space in their booth for this. Many of the MechaCon attendees have posted fond memories of Cassie on their page, and it has made my heart ache with gladness to see that they enjoyed her as much as she enjoyed being there.

Robbie sent me the video showing the first artwork of Cassie as an anime character (the movie will be live action with a few anime sequences) and it is beyond beautiful. Cassie's likeness is perfect, down to her sweet kitty ears. If you watch the video, you can see it about halfway through.

I can't express how much it means to me for this film to be made. For Cassie's sweet image to be seen by anime fans and cosplayers everywhere, sharing the message to be freaky fabulous, embrace your differences, find joy in being you. Every dollar contributed counts. Every "like" on the facebook page, the youtube page, every share on reddit or facebook or tumblr counts. Please. Please. There is no better way to immortalize our beautiful girl, and no words for my gratitude to Robbie Bryan for including her in his project.

Please click the links, please like, comment, share, contribute to the fundraiser.

Black Hat at Seed & Spark

Black Hat Anime Facebook

Saturday, January 18, 2014

The things we leave behind

How do you even contemplate disposing of almost 17 years worth of a little girl's plans, dreams, inventions, creations? Every bottle cap that was going to be a necklace, every acorn cap that was a fairy bowl, the popsicle sticks and wine corks that were going to be dollhouse furniture? She had plans, schemes, ideas, a head full of wishes and thoughts that never came to fruition. Robbed of her stamina and the use of her hands, she collected the trinkets and baubles to create fairy houses, jewelry, scrapbooks. A treasure trove of bits and pieces, my little magpie has them all lovingly stored in her bedroom. And now I have to stare at them, hold them in my hands and decide over each bottle cap, each length of ribbon, every piece of paper with her handwriting, what to do with it all. The shirts with the necks cut out so they wouldn't damage her skin, the ponytail holders, the posters and books and the pieces of her life surround me. Looking at them brings no comfort, but the thought of parting with them brings nothing but hurt.

I have a sudden urge to beg my landlord to sell me this house. To never leave the last place she called home. I know I can't afford to stay. Thank the powers that be for the assistance from all over that has poured in; Walt and I will have a few months here, but before long it will be time to pack our things and go be somewhere that Cassie never was. Where she never slept or laughed or cried. For me to spend my days in rooms where I never hugged her or heard her walking around calling for the cats or cleaned up her spilled paint, spilled blood. Do I box up everything she owned and store it away? What if one day I suddenly need to see her tee shirt with the butterfly winged kittens so badly that I'll die if I can't, but it's gone? The dress she wore to her prom, the necklace she wore for her 16th birthday, the boxes of crystals, the mangas, the things that prove she was here, she was alive, that brought her such delight?

The Monster High dolls. Oh, those dolls. Dozens of them. Yes, in truth, probably about 100 of them. If you had heard her squeal of delight with each new one you would have bought her a thousand. The way her face lit up when I came home with one that was hard to find, that she couldn't wait to get. The ones she got just weeks ago for Christmas and barely got to play with. How do I let them go?

How do I let her go?

Wednesday, January 15, 2014

Once Upon a Time, There was a Girl named Cassie

I have sat down to try to tell this story many times over the last few days, but time keeps doing funny things. I'll have a conversation or clean up a bit and assume hours have passed and it's been minutes. Then I sit down and stare off into space for a moment and when I look up, it's dawn.

What happened. Cassie and I both came down with the upper respiratory crud a week ago Sunday. But her lungs were clear, her fever wasn't terrible. She felt crappy but she was in no apparent danger. I was in touch with her doctor throughout the week, and Cassie declined to go to the doctor to be checked out. On Wednesday she was very tired and slept a lot, only ate a little, and didn't drink enough. Thursday morning she was quite weak but she nibbled on some graham crackers and then went down for a nap around noon. She still wasn't drinking a whole lot, she'd had a few ounces of ginger ale, and I'd tubed her some water. Her nurse arrived and per instructions from her GI, we gave her tube feeds of electrolyte solution and she slept throughout the afternoon. Around 5pm I first noticed that she would open her eyes when you spoke her her, but her right eye wasn't quite tracking with the left one. And despite having now had a decent quantity of fluid, she hadn't urinated since around noon. Her lungs were clear and her heart rate was 108, which is high but not unusually high for her. She often ran into the 110 range. Her nurse left at 8pm and I kept a close eye on her, debating taking her into the hospital, knowing that she didn't want me to and would refuse if she were able. Then around 9pm her temperature spiked to 102.4 and after texting with a friend who is a nurse in the kids' pediatrician office, I decided to take her to the hospital. I called friends to come stay with Walt and when they arrived, we called the ambulance. While being transported Cassie would open her eyes when you spoke to her but didn't speak. She didn't seem to be aware of what was happening. At the hospital they started an IV for fluids and drew labs, and again, Cassie didn't appear to feel any pain, but she started moving her arms a bit and shielding her face, as if the light hurt her eyes. We turned off the overhead light and I was bathing her face with a cloth, waiting for the labs to come back, when her body jerked strangely and our friend David turned the lights back on. At that moment her face flushed purple and David yelled for the doctor. He returned and listened to her with the stethoscope and said she was "bradying" down; we were losing her. We briefly discussed putting her on a bipap machine to see if it would buy us time to take her home, but he told me he didn't think she could survive the transport. So they stopped; the medical staff backed away, and after a few more little breaths she was gone. Walt and I kissed her and told her we loved her and would take care of her cats, that we would see her again one day. She was just gone.

Cassie was born and died on a Thursday. She was born after two early pregnancy losses and there was never a more wanted and hoped for baby in the world. She was the first grandchild and my mother adored her beyond measure. When she was born, they told us to take her home and enjoy her while we could, that she probably would not survive her first year. We enjoyed her every minute, every day. She grew into a strong, stubborn, tenacious, talented girl. She believed that magic was real, that in a quantum universe Hogwarts really exists, and that dust motes were actually fairies in disguise. She spoke cat, and had long conversations with her beloved kitties. When she grew up, she wanted to go to school in Japan with her darling friend/sister Morgan and become a manga artist. She wanted to run an animal rescue. She was so full of life, and dreams, and hopes. More than her fragile body could contain.

Over the last several months before her death, she drew less and less. Her art was her life, but often exhaustion won the day. She was sad and discouraged when she drew and her efforts left blood from her wounds on the paper. Looking back now, I see the signs that Cassie was just getting too tired. She was crossing things off of her bucket list. Her first love, her sweet Max and their adorable romance. Comic Con. Sleepovers with friends. Sundays with Rachael where they spent hours looking at cat videos and playing with the Monster High dolls they so loved. Rachael let her try Sake. Trudy let her drive her car around the parking lot. A boy who called her his wife. The tiny tastes of an adulthood she would never have.

Her last two weeks were filled with holidays, New Year's Eve with six of her friends sleeping over, and pancakes for breakfast the next day. Listening to Welcome to Nightvale when she fell asleep. The promise of meeting Wil Wheaton at Comic Con for her 17th birthday. She died as she lived; excited for what would come next. 

To say her loss has left a void in my life would be laughable. Not a void. A black hole. The big bang. My entire existence revolved around her and her care, and at the moment I feel that her passing took the both of us. Life was hard. It was hard watching her suffer, hard feeling helpless to heal her, to alleviate her pain, to give her the things I couldn't. But I would have done it all for the rest of my life. I would have sold my soul for Cassie to have one day of complete health before she died.

The future is full of possibilities for me and Walt now, and those possibilities are terrifying. I don't want them. Not like this. I can do anything, and all I want is to hold my little girl, kiss her cute little nose, hear her giggle until she snorted, sit with her and look at silly cat memes on Tumblr. We never got to go see Frozen, or the 2nd Hobbit movie. We didn't get to go to Comic Con. Welcome to Nightvale is doing a live show in New Orleans in March, and she would have bounced and screamed (and cursed) with excitement.

I am grateful more than I can express for the outpouring of love and generosity from those near and far. From those who jumped in the car to be at my side, and those who have organized food and donations. Many people have asked what they can do for us right now. Here's what I would ask you to do. Join the Team Cassie facebook page and follow us as we continue Cassie's legacy. Join The Butterfly Fund and help spread the word about the need for a cure for EB. Do something kind in Cassie's name. Hug someone who needs it. Stop and help that stray cat in the parking lot. Add some love to the world, and do it thinking of Cassie. Let her life's work be that she made us all a little kinder, a little more loving, and that she made cat people of all of us.

Sunday, January 12, 2014

Sunday Morning

I cannot comprehend how I am supposed to live through this.