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Filed under: Uncategorized — springtwist @ 5:41 pm

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neuroblastoma February 6, 2017

Filed under: Uncategorized — springtwist @ 9:04 pm

its quiet up here, and a bit lonely. our room is teeny.

luckily we have a window that looks outside this time. theres some giant light thing running up and down the side of one skyscraper, pink. doesn’t seem to have a purpose, but its fun to watch zip up and down.

theres stickers in this room – put here by other kids who have lived up here in the past. its really sweet actually. like little tokens left behind. from kid to kid, a sort of cheerful message. we were here before you. like a guestbook maybe.

i do not like this room. theres no bathroom. in our old room we had a litle mini fridge in the room with us, which was a great blessing. when i am the only one here with her and i cant go down the hallway to find lunch, having a fridge in the room was so good. obviously we can manage fine without the fridge but the bathroom is more annoying. every time i need to pee i need to call a nurse to come sit with thalia. i can manage that too of course. but still – annoying.

everything is frazzled. i feel like i should have my own bravery beads as well. i am being brave too.

my mom was here all day and yes she was helpful for a lot of it, but in the evening she just started going on and on in a one-sided heart-to-heart conversation. “i just know she will be fine. and im not being silly. i just look at her, and i know that she will be fine. i feel it” erm, yes that is actually quite silly. whatever. i guess it depends on what your definition of what’fine’ is. here is a small collection of the side effects we can pray we don’t get in the future: infertility, hearing loss, heart problems, higher chance of getting cancer as an adult, early onset menopause (early being like age 14 if we don’t do anything about it.) this girl will be on hormone treatments just to get through puberty. she will never have a period. she will never conceive naturally. she might come out of this being hard of hearing and needing hearing aids and speech therapy. the cancer might decide to spread to her spine.

jims dad just invited himself over tomorrow. just have the grace to ASK first. we are going through chemo, i have work to do at the same time, i can play hostess all the time. i tried to gently tell him that we already have my aunt and cousins and another friend coming, and he said “great. I’ll be there in the afternoon.” dunce.

 

 

cancer January 13, 2017

Filed under: Uncategorized — springtwist @ 9:24 am

theres too much in my head. i cant pin it all down.

my baby has cancer. fact. we are moving forward every day to make this not a fact any longer.

i thought i had more to say.

 

studying December 13, 2016

Filed under: Uncategorized — springtwist @ 12:03 pm

for better or worse, the whole term will be over tomorrow.  i rocked my first exam and im going to be okay on the anatomy one.

last night i was pretty convinced that i wasn’t going to though. i recognized it as lack of sleep and needing to quit for the night and go to bed. tucked in one last 40 min studying to finish up the chapter all about brains then took thalia to bed and we slept really well. blaze gave me hell this morning, cordelia ended up walking to school by herself. she is awesome – shes not a little kid anymore, shes very quickly becoming her own grown up kind of person. she will be 7 in the spring. SEVEN. the baby we thought about aborting. the marker of our time spent as parents. the amount of years since i graduated from undergrad. blaze meanwhile alternates between being the sweetest, most gentle soul and being posessed by satan. she keeps pretending to be a puppy these days – she thinks shes a long hired poofy puppy. really shes a tenacious terrier of some kind  – loud, all over the place, high energy, stubborn, clinging to things and shaking them until they shred. like my patience. we were very very very late for school. i send coco on ahead so she at least could be on time. ive been studying so much and blaze is telling me its actually too much. shes uses high volume to tell me this.

breezed through parasympathetic/sympathetic nervous systems in one hour this morning, and i have about half an hour left before i need to be home. gotta stay on track for this lat little bit of home stretch. then i will knit all the things and throw myself at christmas prep. hang out with my girls. slather lots of love on blaze to help her get balanced again .

 

December 8, 2016

Filed under: Uncategorized — springtwist @ 11:30 am

i feel like im reaching a limit here. which is a bit scary becasue i only have two exams to get through. this is not the worst of what school will be like – placement on top of classes will be super hard. if i can’t handle two exams then placement will kill me.

i have done nothing today. the thought of doing anything is daunting. there’s so much to do and i want to go sit in a hole somewhere – i am getting ‘you need to slow down right now’ signals from myself. i have to ignore this becasue! i need to study – i need to, i don’t have much time left now. i need to clean up my fucking house. i need to seriously clean it, like the walls and the baseboards and pull out the fridge and get all the shit out from under and behind the couch and whatever is behind the toilet. i do not have the time or the energy or the motivation and yet it still needs to be done.

i went to class all day yesterday. and came home to a fucking disaster. its like punishment for going to class. it falls to me because im the only one who is home to do it.

 

November 24, 2016

Filed under: Uncategorized — springtwist @ 11:24 am

cleaning this place is a full time job. i cannot put in that amount of work.

my mom was here yesterday and together we got a bunch of stuff done, then i went to class and she hung out with thalia. when i left i had everything off the floor, and vacuumed. when i got home, not even 12 hours later, it was back to what it was before. i know for a fact that it was tidy because i did it. i have witnesses. i simply don’t have the time.

i have about 18 seconds before thalia makes her way over her and asks “boob-boob mama?” she was watching her favourite dog show but just climbed of the couch and is headed over here.

i have two weeks of class left for anatomy and one week of class left for my other classes. i got my anatomy homework in, i talked to my prof about my big paper, i made a plan and i started to work on the ethics stuff for the paper. i need to write one last paper for next week. its a super short one, but involves me reading some shit first. need to budget time for that. then we jump straight into exams!

yesterday i knocked a bunch of things off my to do list and kept moving all day long. Wednesdays are my longest days. i have this cough still leftover from like a month ago, and my mom said “are you sick again?” i said “no its the same cough. i dont slow down enough to get better”.

so today feels like it needs to be slow. its grey and rainy. it snowed last night but it didn’t stay until the morning. meeting a friend for coffee for an hour soon. making plans to go to the science centre on the weekend. considering looking for more professional help with what the fuck we do with blaze – her tantrums and fights are getting more and more intense and everybody is suffering. the other day when i picked them up from school, she crawled on all fours across the school yard screaming, refusing to get up and walk. it was about mittens. shes smacking people now – screaming, threatening, trying her hand at experimenting with blackmail, (she told jim the other day that if he didn’t make her exactly what she wanted for dinner she would leave this family. jims like ‘yeah okay. good try. now eat your cucumbers please.’) and then walloping anyone who is nearby.  im going to talk to sondra first, she was a family counselor for 10 years. she will come with her own biases becasue she knows us – but she may also be able to offer something different for exactly the same reason.  jim and i talked about signing her up fro kids meditation classes as she actually cannot calm down. she gets so worked up and then she cries and yells about how shes trying to do big breaths and calm herself down but she just can’t.

theres a childrens yoga/meditation practice at the zen Buddhist temple. i went there a few years ago for a meditation class.

 

November 9, 2016

Filed under: Uncategorized — springtwist @ 11:53 pm

i. will.crash. soon.

i can see it coming. i wonder what the tipping point will be.