goodnightmoon: Mulder 2 (cassie)
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.

Cassie

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)
Not much of an update, but I thought I'd write something about the holidays before it seemed to far in the past to bother. Christmas was all right, though I really wasn't in the holiday spirit much this year. Cassie got Monster High dolls, as usual, and Walt got Legos and DVDs and clothes, and they were both quite happy with their gifts. Trudy and her family came over Christmas eve and we had a pretty simple dinner, ham and roasted brussels sprouts, stuffing and mashed potatoes, and lots of Baileys. Cassie was just getting over the upper respiratory crud so we kept Christmas day pretty quiet. Christina, Franke and Brett came over and we played a few rounds of We Didn't Playtest This At All and ate pie. Cassie recovered from the crud, and had an epic sleepover on New Year's eve. I had six girls here between the ages of 10 and 15. The last one only just went home yesterday.

Then Cassie woke up this morning around 4, sick as could be all over again. Fever, cough, headache, stomach ache, the whole enchilada. She even said if she doesn't feel better by Tuesday she'll agree to go back to the doctor, which means she's at almost Ebola on the pain scale. She's coughed for hours on and off, then has dozed fitfully today.

Fandom wise there isn't much going on. It's truly Hellatus, with both Supernatural and Revolution on pause. Thank goodness Revolution comes back this week, though I had to admit I'm kinda scared for its future. I've read multiple cancellation prediction charts that have it listed as "sure to be cancelled at the end of this season". Which sucks, because it's improved so much this year. If year One had been this strong, I think the numbers would be very different. And the fandom just isn't growing very much. What fandom there is seems to mostly ship Charlie and Monroe and just OH GOD NO.

And Supernatural, while I'll always love the characters, I feel disconnected from the show. I think it should have gone out strong two seasons ago.

Sherlock is good, though there's a shift in the mood and tone that I can't quite put my finger on that I'm not loving. Too many quick cuts, too music video-esque or something. Not quite as moody. This Sherlock isn't as dark.

Nightvale continues to be a source of pure joy. I've read more Nightvale fic in the last couple of months than I have of any other fandom in years.
goodnightmoon: Mulder 2 (Logan)
Later today is Walt's 15th birthday party. Is pretty incredible how far we've come, and how talllllll this kid is now! And apparently in love with Justin Timberlake, per this conversation last night:

Walt: Were you just talking about my birthday party?

Me: No, that's all arranged. The strippers will be here at 4:30. (turns to visiting friend) You did tell them to send a Justin Beiber look-alike, right?

Walt (looking horrified): I don't want Justin Beiber, I want Justin Timberlake!

Me: But he's married.

Walt gasps, hand fluttering up to clutch imaginary pearls: You mean he's cheating on me?!

Never a dull moment with this kid around.

I've got a blueberry pie baked into a cake in the oven right now, as per his request, and this evening we'll have a houseful of teenagers and I'll be reminded just how fast the years are flying by. I'm 17 months from being the parent of one legal adult, and a mere three years from having two of them. They'll both still be living with me and mostly dependent on me, but they'll be old enough to vote. The democrats will need the two extra votes, no doubt.
goodnightmoon: Mulder 2 (Logan)
Kids:
*Cassie is doing pretty well right now. Other than that horrific looking right foot, she's had a decent summer.
*She went to her first con without me. She and her friend Racheal (who is over 18), and Racheal's partner Riley took her to MechaCon in New Orleans. She had a glorious time, though she slept 16 hours the next day, she was worn out.
*Walt is having trouble getting back into the groove for our school year. We're doing Time4Learning this year, which is an online program, and he's really missing the long summer days of sleeping until noon and playing Minecraft all day.
*He had some tests done to figure out why he vomits so often. The diagnosis is slow motility, which just means sometimes his plumbing is too slow. So he's on a pill and a laxative to take care of that, and I'm working on cutting all the white flour and other crap from our diet.

Life:

*My van is dying a slow leperous death, one part at a time. The newest issue is the front windows won't roll up. I taped a tarp over it and will just get by without it for as long as I can.
*Welcome to Nightvale is the coolest thing ever. http://commonplacebooks.com/welcome-to-night-vale/
*I wish I were excited that Supernatural is coming back, but I'm not. I love Sam and Dean, but it's long past time they rode off into the sunset.
*I don't think even Noah Wyle can get me to go back for Season 4 of Falling Skies.
*At least there's Revolution and Hannibal.
goodnightmoon: Mulder 2 (Logan)
I have yet to manage overcoming the self consciousness that make it impossible for me to blog on a regular basis. I don't know why I am so bothered by talking about myself. I'm constantly trying, and failing, to get past that.

I'm screwing up my nerve and admitting that things have been rough here for a couple of months. I have been going through a pretty severe bout of depression. Some would say I have a lot to be depressed about; the brink of financial disaster, illness, recent transitions resulting in a member of our household moving away, single parenthood, etc, etc. But over the years, most of these things have caused me anxiety but not depression. Not the kind of depression where I can barely scrape myself out of bed every day to slog through the motions of existing because it all suddenly feels meaningless, purposeless, soul-killing. But that's how it's been for a couple of months. I'm trying to fight my way through it, but I still don't feel like I'm winning yet.

Things are so bad financially. Two months of having to buy a lot more bandages than normal while we waited for medicaid to start paying for Cassie's medical supplies has crushed us. My rent has been late every month for the last three months, my van is not going to pass inspection next month without repairs, and we're starting to have a flea issue because I can't afford the monthly treatment for the cats. I'm considering rehoming some of them. The only other thing I can do is consider moving us again to a cheaper place, which is a really horrifying prospect, since we've only been here 15 months after two years living in a very low rent, high crime area because the rent was cheap. It makes me terribly sad that I've never been able to provide my children with a home base that was that one place they could always call home. We have moved so often that I feel like they've never really gotten to put down roots and feel that any dwelling is really home.
goodnightmoon: Mulder 2 (Logan)
I keep swearing I'm gonna come back here and post before they shut the place down, but I never do. So here goes.

Things have been busy as usual; at one point in May I had four teenagers for a few weeks. My two, a nephew, and nephew's friend who I took as an emergency foster when his mother had some issues. That was an interesting experience. I think they played about a thousand hours of Minecraft and went through 100 gallons of milk in three weeks. But now I'm down to just my own two kids. Nephew is staying with grandparents for a while, then heading off to live with his mother, foster kid has gone to live with his grandparents, and my food bill has been cut in half.

We've been dealing with the usual rounds of health issues. Walt has been having periodic episodes of vomiting that have gotten more and more frequent. At this point he has a 24 hour period every couple of weeks where he can't keep any food or liquids down, and all the testing so far has come back normal. We'll be having some more done in August.

Cassie is mostly stable, other than a very deep non-healing would on her right foot. We thought it might be Squamous Cell Carcinoma, but the dermatologist thinks it's okay for now. She referred to a wound care center at the hospital that is staffed by people who had never heard of EB before, and seemed to think I was being overprotective and bossy when I wouldn't let them debride the wound. So they gave us some samples of a silver calcium alginate dressing and sent us on our merry way. Cassie has been really tired the last couple of weeks; having trouble even staying awake long enough to eat sometimes. She got up today at 11, took a nap from 2-4, and asked to be put to bed at 8pm. Hopefully she'll perk up a bit soon.

In fannish news I am not as excited about Season 9 of Supernatural as I should be. I love Sam and Dean and I will forever, but I'm ready to let them ride off into the sunset and live on in fanfic. But I am very happy about season 2 of Revolution.
goodnightmoon: Mulder (pic#5772827)
Firs time crossposting to Dreamwidth. I'm starting to worry one day I'll log onto LJ and find it's gone, or at least no longer in English.

Things have been busy as usual; at one point in May I had four teenagers for a few weeks. My two, a nephew, and nephew's friend who I took as an emergency foster when his mother had some issues. That was an interesting experience. I think they played about a thousand hours of Minecraft and went through 100 gallons of milk in three weeks. But now I'm down to just my own two kids. Nephew is staying with grandparents for a while, then heading off to live with his mother, foster kid has gone to live with his grandparents, and my food bill has been cut in half.

We've been dealing with the usual rounds of health issues. Walt has been having periodic episodes of vomiting that have gotten more and more frequent. At this point he has a 24 hour period every couple of weeks where he can't keep any food or liquids down, and all the testing so far has come back normal. We'll be having some more done in August.

Cassie is mostly stable, other than a very deep non-healing would on her right foot. We thought it might be Squamous Cell Carcinoma, but the dermatologist thinks it's okay for now. She referred to a wound care center at the hospital that is staffed by people who had never heard of EB before, and seemed to think I was being overprotective and bossy when I wouldn't let them debride the wound. So they gave us some samples of a silver calcium alginate dressing and sent us on our merry way. Cassie has been really tired the last couple of weeks; having trouble even staying awake long enough to eat sometimes. She got up today at 11, took a nap from 2-4, and asked to be put to bed at 8pm. Hopefully she'll perk up a bit soon.

In fannish news I am not as excited about Season 9 of Supernatural as I should be. I love Sam and Dean and I will forever, but I'm ready to let them ride off into the sunset and live on in fanfic. But I am very happy about season 2 of Revolution.

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