Today I browsed through years of past dok.com blogging, from the time when we were a younger family, all alive, but living with the realities of leukemia. This is only part of what has shaped our family, but it has had a profound impact, and perhaps nudges us onto the paths we now follow. The reflections are still true, though we’re older and in different places now. In some ways, they’re more true than they were back then … because at the time, they were somewhat speculative. Now … now we know what those realities are like.
This post is borrowed from May 2006:
OUCH, OUCH, OUCH…GLAD TO BE ALIVE: Life can be measured in joy, or pain, or both. Most of us live with some imperfect muscle, cranky joint or upset organ, or something. When it’s extremely out of whack, we go to the doctor and hope for a fix. In Jessie’s case, as with many cancer patients, we deliberately challenge and compromise and injure systems in the body, so that we disrupt the life cycle of potential cancer cells. Unfortunately, it also affects desirable cells. And the results include a lot of pain, nausea and discomfort.
And so, sometimes we tell ourselves that this is the song…the orchestral warm-up…the raucous drunken chorus…of a living, protesting body. It’s easy to say it, and to make analogies. Jess is the one who must live inside the cacophony of her body’s screams and groans and moans and aches. Usually she can. She does. She doesn’t complain unless it’s overwhelming (or unless she’s so bored she can’t think of something else). We’d rather hear her discord than silence. But oh, it does hurt. And it hurts us, to knowingly “stay the course” that causes her harm, in the hope that it will mean she survives, even with some impairments.
Then again, watch her playing with her friends. Dancing with teacher Jenny. Running after a soccer ball on the days that she gets to be on the field. Paddling in the pool. Walking the dog. Juggling some cups of tea from Zumi’s. And you know that it’s worth it. That she can function, even in imperfect condition, and grab onto the experience with ardor and enthusiasm.
SCHOOL: Sarah and Jess both attend school today. Sarah’s day starts at 7:25am, and goes until 2:05pm. Jessie’s day begins at 9:30am and ends at 10:30am. Hmmmm. Wait until next year!
MUNCHING, DANCING, PLAYING: Jessie’s preferred activities today are to eat (steroid cravings), dance with her teacher Jenny, and play with her friend Maggie after school. 🙂
DANCE, DANCE, DANCE: Sarah dances all afternoon. She’s already tired from her gym class (she has it every day for 6 weeks right now), running track and working on whatever sport their instructors are exposing them to. And she has an extra rehearsal today, in addition to modern and ballet, for the Ipswich Moving Company’s end of year show.
THEME SONG OF TWO GIRLS…BICKER, BICKER: Today everyone’s cranky. Sarah reacts with extreme emotion to everything (shocking in a middle-schooler, isn’t it?). Jess goes through rages and crying jags, storming around the house, refusing lunch, earning time-outs in her room (over issues like not being allowed to drink soda). Mommy has a short fuse today, after hours of navigating Sarah’s hormonal storms and Jessie’s steroid ups and downs.
And yet, repeat the paragraph above. “Ouch, ouch, ouch…” Life doesn’t always come in harmonics and sweet lyrics. These sounds…as loud and upset as they may be on less-than-perfect days…are life inside a busy, growing, going-in-different-directions family.
We may not always appreciate them, but if the choice was silence, instead of these sounds…we’d choose the noise, wouldn’t we?