I expose these stories purely for record, later to dissect, it's a bizarre world here, filtered by treatment, but certainly not to bring worry, especially about my daughter. I'm a fierce mama bear even on meds, prone to outburst of tears and tantrums. Sure I taste the venom, drops spill as pans crash, but she will always be protected. Still I do see sadness in her eyes and hear wishes that her mama could run, jump, laugh and sing, and speak sweetly, everyday like before. Five more months, she is counting the days, knows spring will bring relief, "Poor mama, poor mama."
Nurse delivered a ten pound dose of mental relief today. Viral load is still undetectable and there is a real reason for the increased fatigue; low hemoglobin. Low several things, but that feels the worst. Not low enough for extra medication, a good thing, as the favored brand brings along bone pain... no thanks.
The evening rolled in and a long deep breath brought color saturation and smooth edges. Music thumped low in my breast, friendship rolled with laughter, deep creases pulled at my cheeks. There's something to this view, wondering if I'll have my tattoo removed or add another one, when this journey changes phase.
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2 comments:
Hey Ample,
Long, deep breaths are indeed a good thing. I seriously doubt anybody reading what you're going through doubts your ability as a parent... I personally find your daughter's awareness and concern for your well-being to be truly a wonderful and touching thing. She's young, and 5 months seems a lot closer to forever for her than it does for somebody our age (although as you and I have agreed, time on tx does seem to stretch out).
Snapping at those closest to us is an unfortunate part of the deal. I call it the "nearest moving target" syndrome. The best we can do is try to help our loved ones understand that it's not really them we're snapping at... it's our anxiety, and frustration, and those horrible moments of doubt. My wife laughs at me when I get surly, because I'm normally so easy-going and mild-mannered.
Stay focused on the good stuff, like being undetectable (I just found out tonight that I am too!) and that there is a light at the end of the tunnel. And for what it's worth, try not to be so hard on yourself... you have obviously set the bar of self-expectation pretty high, but it's okay to miss once in a while. Just remember to dust yourself off and jump again. :-)
Hang in there!
Chris
excellent "undetectable" news!! congrats!! Big relief! Like it's all worth it! And it is... Thanks for your kind words about my daughter (she is fantastic!) and thanks for reminding me to dust myself off... I'm tring, some days it's a breaze.
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