Monday, June 4, 2012

Day 67....

I know I've gone radio silent for awhile, but the truth of the matter is, things have been a little rough around here, emotionally. Sarah and I have been squaring off a lot lately, who knew a four year old would be a worthy adversary in a battle of wits?

On top of that, while Sarah's health seems to be taking a turn for the better (despite my daily struggle to get her to eat anything besides string cheese and cereal), my world otherwise seems to be falling apart at the seams, and I am not taking it well. My job of ten years has let me go finally because I have only accepted one job per school year for the past three years, and I think this past school year I didn't work at all because of Sarah's relapse. I called, and they told me to call them  back when I was ready to commit to three days a week, but I have been taken off the sub list. This has been a hard blow for me. I understand that I really have no choice, if it comes down to my job or my kid, my kid wins, every time. Still, it saddens me to say goodbye to a career that I worked my ass for, and I have no guarantee that I will be able to go back when the time comes. Six years of school, plus ten years of service, and it's all gone. Eff you, Cancer.

Sarah is growing hair everywhere because of the Cyclosporine she takes to combat the graft vs. host diesase, and she looks like a little baby werewolf! I am hoping that it goes away once she's off of this stuff for good. She has on her Belle dress and wig today, and it made me sad as I putt the wig on her, brown curls spilling down her back, and thinking that this is how long her hair would be if it had been able to grow normally. What I wouldn't give to step into the alternate reality of a normal life.

Sarah is chomping at the bit to go outside, to eat strawberries, to go to McDonald's, to be able to swim in the pool or play in the yard, and it is killing the both of us. At least I can understand why I have to say no. She is frustrated and so am I,  because as a mother, your natural inclination is to give your children what they need, especially if their requests are as simple as these. I understand it, rationally. But my heart aches for my little girl, and the little girl she should get to be.

I know, this blog is all inspirational speeches and gusto, and I'm not going to tell you it's bullshit, because if I wrote it, then I believed in it, it's how I was feeling at the time. But today, and for the past few weeks, I am lamenting for the life she should get to have, the life she deserves that I can't give her, at least not right now. I know it's not forever, that things will get better, because they have to. But for right now, in this moment, I'm sad. And I know that makes everyone sad and uncomfortable, too, but it's the truth. I work so hard to hold it together most of the time, that when I do start to come apart, even a little, only a little, people don't know what to do with me. But it's the reality of the situation. If I were happy and upbeat and all "Let's kick Cancer's Ass" all the time, I would be in serious denial. I am a realist. And most of the time, I am all ready to kick Cancer in the ass for all it has taken from all of us, but there are some days where it catches up, and I lament the life we could have had, the life we should have had.

I don't intend to dwell on it, nor do I intend to shove it  under the rug. That does no one any good. I intend to feel it and move on, even if I have to do so on my own.

As an English major and and avid reader, I like to think that I am well-read, but one of my favorite quotes of all time is from a Tori Amos song. "I've found the secret to life/I'm okay when everything is not okay." And I honestly believe that she's onto something. That this is truly the key. It's not about pretending that everything is okay when it's not. It's about pushing forward. Not necessarily striving for happiness, just striving to be okay, and finding happiness along the way, wherever we can.

If my world is falling apart around me, everything I  knew to be true was an illusion, well, then it's simply a chance to start anew, to rebuild, to become something else, however painful that may be.

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