goodnightmoon: Mulder 2 (cassie)
I am trying to get into the habit of using LJ again and slowly eschewing facebook. But one thing that's very important to me is the Team Cassie facebook page. So to the four of you that still post here, please feel free to join it!

Also, we have this new project going, Cassie's Library, to send books on bereavement to EB families. Please like, share, comment, share, buy a book, and oh yeah, share:

Last but not least, I am amused at myself for the strange dichotomy of my favorite show being about a cannibal, but seeing a CGI whale being harpooned in a movie almost made me cry last night. Eating people is okay, other animals is not. 
goodnightmoon: Mulder 2 (cassie)
"if it'll keep my heart soft, break my heart every day."
~Warsan Shire

Today has indeed broken my heart anew. Another child with EB has died, a beautiful little boy named Raul. I could write about how unfair it is, how wrong, and rail at the universe, but to what end? Burying your child is a horror that no one can understand the depth of until they experience it themselves. I know this because for so many years, I witnessed child after child with EB die, and I attended their funerals, hugged their mothers, and I thought I knew. I was wrong, and I'm humbled and brought to my knees by that realization. And today my heart hurts for Raul's mother, who is experiencing that same shock and horror, that no matter how terrible she imagined it would be, it's worse.

Each of these losses bring me back to my own. It's been two years and four months, and part of me is still in that bright white emergency room, watching her take her last breaths, the helpless medical team standing by. I did that. "let her go." I said those words. I did it to spare her pain and fear and surgery and cancer and amputations and I know I did the right thing, but it's such a heavy thing to live with. Some days I can't drag it along with me, and I have to just sit with it and let it crush me a little. Today is one of those days.

It's such a strange place to be, this little bubble world where you have lost a child to the condition that made you a part of a community. For 17 years I relied on the parents and adult survivors with EB, and many of them relied on me too. They become friends, family, mentors, heroes. But after your child is gone, that role, like so many others, changes. You no longer attend the patient conferences or keep up with the latest research, you don't know the newest wound care products or the names of all the regional sales reps for all the wound care companies. You are something both respected and feared; someone who survived EB, but a constant reminder to those other parents that no matter what they do to save their child, they will walk in your shoes someday. You feel a bit like the grim reaper, standing in the shadows, reminding them of what's to come, and try not to feel hurt that they (naturally) need some distance from one more reminder of what this disorder is going to do to their child.

You are no longer the parent. No longer the caregiver. No longer the advocate or expert. You are the harbinger of agony. And it breaks your heart, because for all that you now represent, they still don't know. They can't know. Your life is the boogeyman, the After, and you want to save them, every mother and father who is drowning in this monsterous grief, but you can barely keep your own head above water. So you all flail together, apart.


Jan. 24th, 2014 06:04 pm
goodnightmoon: Mulder 2 (Logan)
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.

goodnightmoon: Mulder 2 (Logan)

Ian has Recessive Dystrophic Epidermolysis Bullosa, and is in stage 4 liver failure. The link above asks about donations to help him get back to Cincinnati Children's hospital, but the reality is that Ian has asked to go to the beach this weekend before returning to the hospital because he feels he will likely never come home. Sadly, he is probably right. Make A Wish is not an option, because it takes too long to go through the application process and coordinate the trip. Ian doesn't have time. My 16 year old daughter has the same genetic disorder Ian does, and you simply cannot imagine the pain this boy has lived through in his 14 years. He deserves this. His family deserves one last happy memory together. Please plaster the entire internet with this image and help make this happen for Ian and his family.


goodnightmoon: Mulder 2 (Default)

August 2017



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