Tuesday, May 25, 2010

Your love is like...

...a roller coaster baby, baby.... You know the song. I know you know it. I am invoking its campy, upbeat, disco dance-ability for a reason. As a reminder that all of the ups and downs serve as a choice.

I've been fortunate enough to have yet another big emotional week, chock full of ups and downs, and most importantly crammed with reminders that we've been granted an extraordinary life. There's the old adage, "Life is 10% what happens to you and 90% what you do with it." I wish I knew Confucius, or whoever coins these little nuggets of cliched splendor, so I could buy him the proverbial beer. I might like to fiddle with the numbers just a tad and make it 1% what happens to you and 99% what you do with it, or something much more extreme- because we need to remember the only thing we ever really have any control over in life is our own actions. It's always a choice. And whether I like it or not, I am always going to choose to be happy, because of , or in spite of my circumstances. I have so very much-my every need is ultimately met- I am so unreasonably and impossibly fortunate...going the other route is not an option.

The bright and heart warming spot this past week was the Hope for Jackson Benefit. I am entirely sure I can't explain the gravity of the feelings that day. I was nervous, anxious, thrilled...nauseous, you name it. It seems so funny to me now, how when people say something happened that showed them who their true friends were- that it could ever have a negative context. Yes, there were faces absent, most due to prior travel arrangements, but some for less pressing reasons. It seems horribly trivial in comparison to those who did come. Dear friends I haven't seen since high school, friends from out of state, friends I had only met in cyberspace, and a friend I lost years ago under circumstances I could only blame myself for- all came in the door, one by one- arms open and hearts in tow, demonstrating their support. And the friends who made it all happen, donors I've never met, people, businesses- all gave of themselves to this cause because of my son. I wish I knew how to show how grateful I am. I wish I knew what Miss Manners would say. I would give these people the world, and never would I insult their grace by stopping to focus on those who would rather be absent. Certainly, I wouldn't say everyone should find themselves in my shoes once in a lifetime, I would never wish it. But I do wish somehow everyone could know what it's like to have your deepest grief countered by the best of humanity. My words are so inadequate, and yet still I'd like to tell you.
The lows this week, however, did not travel alone. I am still fighting with a bit of sadness at having to bottle feed Jackson in order to put some weight on him. (Breast milk fortified with formula for extra calories) All the logic in the world doesn't seem to cover up the little pangs when instead of laying side by side, nursing sleepily in the silence of the wee hours, I stumble grudgingly to the kitchen and cuss under my breath at the bottle warmer through half-lidded eyes.
Then we received the call that his throat culture had come back, and Jackson has been colonized with Staph Aureus. The prescribed antibiotics will only control the concentration of the bacteria, it would be virtually impossible to eliminate (although I secretly hope to defy the odds). We knew he would culture a bacteria sooner or later. It's part of having CF. For some reason I had bargained in my mind that if we made it past six months without a positive culture that it was a sign of future health. I'm aware how far that is from sound thinking. The call was disappointing, although I managed not to cry on the phone with the nurse, and the antibiotics combined with the Pulmozyme have virtually eradicated his cough .
Lost cough goes in the win column, but I was still reminded that the smiling, cooing, momma-centric, cuddle-holic in my lap is battling genetic demons even as he grins his gummy smile and tangles his tiny fingers in my hair. The final blows to my positive mindset came in the form of a cancelled visit from my parents, who have yet to meet Jackson, and a bounced paycheck from the degenerate, deadbeat rat at the music shop where Mike fixes guitars and violins. The former could not be avoided, the latter will result in felony charges against said verminous jackal if he doesn't rectify the lost wages and overdrafts pretty damn quick.

I have to admit, the events of the prior paragraph have taken a lot out of me. It's taking a lot of energy to stave off the negativity. But I still have the choice. I still wake up and choose to be grateful for the boundless gifts in my life or to focus on the imperfect. People too often set their sights on the impossible, expecting few road hazards and personal glory. My sights are set on the beauty of the minutiae- a moment- a brush of tender baby skin against my cheek, or simply one clear, barely perceptible breath from infantine lips as sleep takes hold.

Sometimes I need to be reminded. Some days I get angry at meritless, heartless businessmen, careless comrades, or the echo in my bank account. I am fallible. I resent plastic bottles and stuff my emotions inside them until they break. I forget how grateful I am.

But I am grateful. And I am happy...even when I'm sad.

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