goodnightmoon

It's a cold, rainy New England day, and there is so much I should be doing. I should be studying, or doing laundry, cleaning my room, studying some more. But no. I'm sitting here knitting and binge-watching Halloween Wars.

  Being back in school full time as well as working a full time job isn't a barrel of laughs. I'm constantly exhausted, and behind, and feel like I'm holding it all together by pure luck. The fact that I have to take accounting is a cruel joke, and I'm come to a place of accepting and forgiving myself if I fail the class, which seems inevitable. I've got a good grade right now, but that's because I've done the homework and got lucky on the first test. But I don't actually understand many of the concepts and don't have the formulas memorized, so there's only so long I can wing it. My other classes I think I'd be doing fine if I just had more time. I never get enough sleep, so I feel like my brain is in slow motion all the time.

  I don't dislike my job at all. if it paid enough to live off of, I don't think I'd even be in school. I could write at night while I was at work, and I'd be as content as I'm capable of being. But I need the student loans to subsidize the end-of-life guide classes that I want to take, which don't offer aid or scholarships. It's a delicate balance of insanity and stupidity, really.

And I find myself in a new home, a new city. It's beautiful here and I feel a measure of peace for the first time since January 9th, 2014. This weekend I knitted a hat, bing watched Humans, watched Hannibal, which is so beautiful it hurts my heart, then starting knitting bags to hold my friend's Tara Wisdom cards for Pagan pride day in a couple of weeks. I start work at the Joann's here tomorrow at 5pm, and have an interview for a full time job at a health food store earlier in the day. Busy, Busy. Just wanted to post here because I haven't in so long. 

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.

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.

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.

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.