Ain’t it funny how the night moves?

S is away on business tonight and I had some trouble with self-restraint today which means that I drank way more coffee than I normally do. I’m wide awake and buzzing with spinning tops in my mind. When S travels for work, my daughter and I have a slumber party. She brings all her pillows and we set her up plumped and cozy on S’s side of the bed. We read in bed together before lights out and then I leave her to fall asleep while I do my treatments. A few hours later, I crawl into bed as silently as possible, but she always senses me and her eyes laze open for a few moments. We hold hands and wish each other a good night (again), and then the angel sinks quickly back into her cinnamon dreams.

The angel has an important day tomorrow, so tonight we’ve decided to forego the slumber party in favor of a good night’s rest. She’s getting big and her life is increasingly calling her away from us. A few minutes after tucking her in for the night, I was sitting on my bed practicing letting go; I was feeling a bit sad, lonely, and maybe a little spooked because last night I stayed up until 2 a.m. reading this. The house was whispering, or maybe it was too damn quiet, and I started thinking about what I would do if all of a sudden I saw a tarantula. Not a second after the thought formed in my mind, I saw a black spider saunter out of some hiding place in the wall.

It was a bully spider and I think it laughed at me. It wasn’t a tarantula, but it was definitely on the thick side of things. No bigger than a fingernail, but with enough black heft to require a few loud pounds of a sneaker’s heel. And then a few more for good measure. As I flogged the interloper to dead-without-doubt, I started thinking about the New Age daisy heads and their happy-faced belief that our thoughts create our reality. For a mad split second I wondered if they’re right: I had a thought about spiders and then poof!, a spider materialized. What if I thought about something worse?

Do not think about psychopaths or cockroaches is the refrain my mind chose to prevent myself from stumbling onto a tremorous thought that would “manifest” who knows what horror into my bedroom (Manifest as a verb? Please, kill me now). No psychopaths and no cockroaches because yes, these two are about equal. No psychopaths, no cockroaches, and no more poofing tonight. Unless I can poof a cure for CF and a better day for this friend and this friend.

It’s going to be a long night. The golf club will be keeping me company, just in case.

Besides cursing the six cups of coffee you drank during the day and the time in 8th grade you watched The Shining, how do you deal with insomnia?

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Today’s poem is for the way our hearts miss a love and the way a night can sometimes miss the daytime.

(click link to read entire poem)

Solitude by Kerry Hardie

It was January,

I’d hardly seen anyone for days, you understand…

Mirth returns in the shape of cake.

Happy birthday to my angel who turned nine yesterday. In the typical blossoming cooler-than-thouness of nine year olds, she has adopted the practice of rolling her eyes whenever I hug her. I tell the child she can roll her eyes from here to Kentucky because she’s stuck with my hugs forever.

Now for some housekeeping…

*For those of you who read about my recent clinic visit, I have an update. The no-show endocrinologist called and offered me a sincere apology and a telephone consultation. Although it doesn’t make up for the hours I lost, the courtesy is worth something. Points, doc.

*For those of you interested in the April raffle, I promised I’d announce the books that are up for grabs. I’ve selected anthologies to increase the odds that there will be something for everyone. Although I don’t own any of these titles, I’ve been wanting to add them to my own heaving bookshelf and the next best thing is to give one as a gift. The winner will choose from one of the titles below:

She Walks In Beauty: A Woman’s Journey Through Poems, selected and introduced by Caroline Kennedy

Poem A Day, Volume 2, Edited by Laurie Sheck

Best American Poetry 2008, Guest Editor Charles Wright

Begin booklust now.

*A reader whose blog I visit on a regular basis responded to my last post with this virtual gift:

It’s a reminder we all need every once in a while, and now I have it on my phone to look at whenever I  need to be reminded. I’m so thankful to MSB for capturing the sentiment and sending it over.

*Another treasure came in the mail from N in reply to my momentary rant against words:

A fabulous article from the great Michael Cunningham on writing…a writer should always feel like he’s in over his head.

N has sent gifts in the form of interesting tidbits, links of interest, and literary treasures since Day 1 of this blog. Just seeing her name in my inbox brightens my day.

*Yesterday my beautiful R sent me a photo of something she encountered on her way to work:

I hope you gave the driver a thumbs up, R. Thumbs up (and quiet, heartfelt gratitude) for everyone working to end this disease. Your name will be on the cure.

So many presents to unwrap and savor, I feel like it’s my birthday.

*One final bit of excitement…

I found this in a jacket pocket the other day:

A crinkled fortune in an old jacket, but there’s no harm in recycling fortunes. Perhaps the unexpected event has already happened, but maybe, just maybe, my life is about to sizzle with excitement.  Either way, I’m thrilled. I put it back in the pocket to find it again next year.

Birthdays, mirthdays, delight in the mail days, and excitement on the verge days…all cake worthy.

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Today’s Poem: (click link to read entire poem)

A Little Tooth by Thomas Lux

Your baby grows a tooth, then two,

and four, and five, then she wants some meat…

In defense of graffiti.

I began writing this blog with clarity of purpose.

I wanted to raise awareness for cystic fibrosis, to place those two vile words on every single person’s mouth, as if the rising volume of mass outrage would somehow eradicate the disease.

I wanted to use the time I spend doing treatments to produce something slightly more worthwhile than a few occasionally clever Facebook status updates.

I wanted to leave something tangible behind for my daughter, a stack of papers to hold in her hands, those beautiful hands, cool feather hands, warm shells.  I wanted her to have something to look at and say this is my mother. I wanted to slowly and deliberately pour myself into a container that she could hold when my hand becomes unavailable.

But things are becoming murky.

Lately, I find myself throwing around the word writer. Last week, filling out new patient forms at an appointment with another doctor that’s been added to the roster, I tossed the word out again. Occupation: Mother/Writer. Hmm.

I’m feeling that embarrassing blush of ego and grasp rising in my throat. I find myself imagining someone plucking me out of obscurity, and setting me gently down in a firmly spined book with my name on it. I find myself dreaming of Iowa, and a short piece in The New Yorker.

Besides the magnitude of ego, there’s another reason that these dreams have been sprouting up like pesky weeds. I’ve been feeling better.

Only 6 months ago the word “transplant” was uttered in the same sentence with the words “something we might have to start thinking about”. I was prescribed an even stricter treatment regimen, and a new drug cocktail. I became like a crazed, obsessive conductor, making decisions and establishing the rhythm of my days based solely on a precise adherence to the new regimen and the increasing demands of my disease. My commitment was symphonic, and it seems that for now, I’ve managed to buy myself some time. The whiplash rate of speed with which I had been declining seems to have slowed down. For now. My lung function, which still gets a red, bloated “F” at 50ish%, is at least holding steady. For now.

CF’s caveat is always “for now”. This disease is marked by progressive deterioration (oh, singeing oxymoron), so a few moments of relative stillness feels like a miraculous island emerging in a tread worn sea.

Just six months ago, simply being alive felt sufficient. I was grateful to be alive, and grateful that my daughter had a living mother. But as the fall down the slope has slowed a bit, I’m beginning to look around and remember what it feels like to want to do something that has no relation to health maintenance. I’m starting to feel the startling rasp of inconvenient dreams.

I am living now with the practice of trying to discern my sincere dreams from the lusty force of my ego. It’s difficult. My ego just joined Twitter. But I try to remind myself daily of the great space between a writing life and a recognized life. The two are not necessarily companions- just ask Emily Dickinson.  When I lower the volume on the twittering, the egotistical tantrums, and the interminable strategies, I return to working on the white stack of paper that I’ll leave in my daughter’s piano player hands.

There is no way to defeat CF. For now. And even the long awaited cure, if it ever comes, will not deliver us from death, it will simply allow us a different, hopefully gentler, kind of death. The only way I know of winning is that sheaf of papers, published or not, left behind. We each have a different way of doing it, the graffiti artist spray of I WUZ HERE.

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Today’s Poem: (click link to read entire poem)

For My Daughter In Reply to a Question by David Ignatow

We’re not going to die.

We’ll find a way.

We’ll breathe deeply…