Wednesday, March 23, 2011

I know, I know...

Okay, so I know, I totally effed up the new year's resolution thing, and it's only March, but I think I have a pretty good excuse! It has been a CRAAAAZY three months! But tonight, Miss Boots has declared that she is sleeping with Ama tonight. I am rendered completely unnecessary, and I don't know quite what to do with myself. I should be threatening Sarah to sleep right about now ("I'm going to turn off the tv...okay, then go to sleep..."). Now what? Oh, yeah, that thing I said I would do...

It's been a crazy ride, and I have blogged about all of it in my head at least a dozen times, but can never quite get a chance to sit in front of the computer uninterrupted for long enough to get my thoughts down. The doctors have changed the protocol for leukemia patients, and Sarah got another cycle of chemo thrown in, which includes pumping her full of toxic chemicals every other week during a scheduled hospital stay. Not exactly how I would like to spend every other weekend, but hey. Miss Boots has gone through it all right, except for the mood swings. Now, the doctors have assured me that moodswings, especially this violent, are not supposed to be a side effect for the medication they are giving her. But fatigue is. And Sarah wouldn't take a nap by choice if you paid her, so she spends all day fighting her fatigue, which makes her cranky, and I get to hold her down as she thrashes and screams, remain calm while she screams the ugliest things that every parent dreads they will one day hear from their children, and be ready and willing to forgive with open arms when she is ready to apologize. It has been hard, and then there is the break in routine I discussed in a previous blog, only now it's worse, because as soon as we get settled and back on track, it's time to go to the hospital again. Thankfully, this weekend should be the last hospital stay (scheduled, anyway) and then she should go back into maintenance when things should settle down tremendously.

Another thing keeping me busy and off the computer during my "free" time? Beads of Courage. Beads of Courage is an organization that gives beads for every thing the child goes through while undergoing treatment. Every time they poke her, every time she goes to clinic, every time she gets chemo, every physical therapy appointment, every transfusion, gets a different colored bead, and it all gets added to a necklace that is a Telling Rope of sorts that will help Sarah to tell the story of all she has endured. A beautiful concept, really, poetic and inspiring, and heartbreaking in its simplicity and depth; however, it would have been more convenient for me had they told me they were going to do this in the beginning of her treatment so that I could have kept a diary or at least kept better track of her records. Instead, they tell me almost TWO YEARS LATER, and now I have the fun project of digging through two years' worth of incomplete paperwork (I stopped taking some of them after awhile, there were just too many) to tally how many times she has been in the hospital, for how many days, how many times they have poked her, etc. My final tallies are guesstimates at best, but it's better than nothing because I really want Sarah to have her necklace, even if it isn't entirely accurate. She's just going to have to forgive me for that, among all of the other ways that I fall short.

I have also been spending more time with my daughter, working on math and reading concepts, and she is really doing quite well for a three year old. Sarah now knows half of the alphabet out of order with their phonetic sounds, and can count to 15 without help, to 20 with help, and can recognize her numbers up to 10 out of order with 90% accuracy.

The novel, the diet, the exercise, all have fallen by the wayside, but they are ever present in the back of my mind, the novel especially. I am constantly making little notes, reading books that could possibly inform me better of the time period, or the social setting, little tidbits here and there as far as plot and storyline, but no actual work yet.

The blog seems more do-able as far as writing goes, and there are a few things still that I want to document, little significant things that have happened, but as they are so varied in nature, it would seem too disjointed to add them here. Another blog, another day...I promise...

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