Primal Scream

Another month in the Twilight Zone? Another freaking month?!

E, bless her heart, is oblivious to all the wrangling we've been doing via the phone to set up a new surgical date to clip her aneurysm. One of the specialists--the GI doc--can see E the first week of December. The other one doesn't have an opening until January 4th.

Hello? This is the soonest they can see a child who has an aneurysm cooking inside her head? Doesn't take a brain surgeon to do the math. Elective surgery or not, a month is too freaking long to wait, hoping all the while the thing doesn't call everyone's bluff by bursting.

And what if the doc doesn't clear E right away? What if he orders more tests before he feels comfortable enough to bless the surgery?

No way. I refuse. I'm not waiting another month. I've put a call into E's old kidney specialist, Dr. C, the one who saw her after the first aneurysm rupture back in 2001, the one who ordered the blood pressure medicine in the first place. We haven't seen him for a couple years because a change in our health insurance forced us to find another team.

He's good. He's thorough. He and E share a history. Maybe, since he's seen the downside of an aneurysm rupture, he'll appreciate E's current health situation enough to fit her into his schedule ASAP.

Appetite for writing:
Hopeful (especially now that I've finished ranting)

Edited to add:
Leaving soon to catch up on errands. Planning to listen to Kathi Appelt's tape on character and controlling belief while in the car. Musings on her lecture and how it applies to my writing to follow in a later post.

The Waiting Game and Embracing the Pooh

Waiting. Our family's doing a lot of it lately. Waiting for phone calls to be returned. Waiting to hear what the docs plan to do next. Waiting to learn whether or not the holidays are a bust.

I don't blame the physicians for the Waiting Game. Not entirely. They've been raised on hospital time. And as anyone who's dealt with hospitals knows, hospital time is not equal to real time.

Hospital time crawls, subject to shift changes, lab tests, emergency surgeries, and an endless stream of patients needing medical attention now. Real time races, caring little about the crosses we bear as we rush from one activity to the next.

Given the differences between the two time realities, it's no surprise the anesthesiologists thought nothing of questioning the test result the day before surgery. A delay in their eyes was necessary in order collect the data they needed.

Doesn't matter that getting appointments for the needed specialists might delay the surgery for weeks or months. What matters, they say, is learning more about this problem and its potential for adversely affecting the success of E's surgery.

Okay. Makes sense. Makes me want to give docs the benefit of the doubt. Makes me want to believe surgery was cancelled because the findings that "came out of left field" required labs and testing that truly couldn't be done prior to going into the OR. Not because someone was worried about catching a flight out for Thanksgiving later that day.

In the meantime, we move through our days, E embracing her inner Pooh, me, channeling every bit of my inner Owl, Eeyore, and Piglet.

For the record, no matter how loudly Pooh's friends complain, I won't let them silence my inner bear. Not completely. During moments of quiet, usually when the girls are at school, and I give myself permission to be still, he speaks. And I listen.

I don't always follow through on his advice, but he doesn't seem to mind. He keeps talking, and offering me honey, and reminding me to take joy.

Thanks to my inner Pooh, the holiday decorations are out, the tree is up, I'm making lists and checking them twice. And I'm writing.

Taking joy one paragraph at a time.

Writing Behind My Back

In the midst of our roller coaster ride with E, I find myself thinking a lot lately about Kathi Appelt's notion of controlling belief in character-driven fiction.

Seems an unlikely pairing, our family's roller coaster ride and fiction. Yet, the connections keep coming. Between my belief that we were back to normal, and the conflict that arose after learning I was wrong. Between E's journey and my own. Between my personal experience and the main characters in my stories. The relationships between them all is undeniable, proof that I've been writing, or, at the very least, thinking about writing, behind my back.

It this it? Is this the connection my Vermont College advisors hoped I would internalize before graduation?

Very intrigued by how this concept will strengthen the emotional throughline of my current work-in-progress. More later, after I listen to Kathi's entire July Residency lecture on the subject.

Appetite for writing: Hungry

The Tao of E

Sitting at the dining room table, listening to P as he shares excerpts from The Tao of Pooh by Benjamin Hoff. Unable to hear Hoff's ideas without connecting them to E.

In the opening chapters of his book, Hoff explains the notion of the Uncarved Block as central to Taoist beliefs. The Uncarved Block, he says, represents a thing in its natural state. And it is this state to which the true Taoist aspires.

A tree, for example, would be considered an uncarved block. It exists in nature and with it. It bends with the wind, rather than resists it. It does not aspire to be a brook or a rock or something other than what it was born to be. It simply is...a tree.

Winnie-the-Pooh approached life like a Taoist, says Hoff. The Taoist ideal, he writes, "is that of the still, calm, reflecting 'mirror-mind' of the Uncarved Block, and it's rather significant that Pooh, rather than the thinkers rabbit, owl, or Eeyore, is the true hero of Winnie-the-Pooh and the House at Pooh Corner."

Hmmm. I've been a Pooh in years past, but not lately. Not since we first learned of E's new aneurysm in August, and especially not since the surgery to clip the bugger was canceled last minute. I've been more like a fretting Eeyore, thinking man's Rabbit, or busy Tigger.

E, on the other hand, was born a Pooh and remains a Pooh. Even after her aneurysm rupture in July 2001 took away most of her friends, her ability to walk unassisted, and her independence on so many different levels. Even after physicians canceled Wednesday's surgery with less than 24-hours notice.

Rather than resist the latest news--that surgery had been canceled--E bent with it. Sleeping in until 11:30 the next morning was her only concession. She has always practiced what Hoff describes as the "simple, childlike and mysterious secret known to those of the Uncarved Block: Life is Fun."

I must read Hoff's book.

Edited to add:
I must think more about how Pooh's philosophy relates to writing, especially during times when life conspires.

Still processing...

I should feel relieved the anesthesiologists raised zero-hour questions before a potentially lethal problem arose in the OR.

I should give thanks our family can celebrate Thanksgiving on Thanksgiving day.

I should be grateful for so many reasons...the shimmering beauty of this morning's first snowfall of the season, the sound of my younger daughters giggling on the sofa in the next room, the fact that I can unpack our suitcases, removing them from my view until surgery's rescheduled.

Instead, I feel somewhat like Bilbo did when talking with Gandalf on the eve of his eleventy-first birthday party: "...I feel all thin, sort of stretched, if you know what I mean: like butter that has been scraped over too much bread."

Processing...

We were still in the driveway. The girls were buckled up, ready to drive to E's zero-hour test. I had yet to slide into the front seat when my cell phone rang.

Bottom line: Surgery's off. The why of it is too long and complicated and justified to get into.

Current mood:
Picture the hour glass icon on your computer screen, the one that appears whenever the computer's thinking. Or freezing up. That's me.

Possible Hitch

Received a voice mail from the surgeon's nurse while shopping for supplies to keep on hand during our stay at the Ronald McDonald House.

Here's the gist of the message:
Hello, Kim. Sorry to call you again. I was going through your daughter's file today, organizing all the clearances, and need to know what you know about the results of the CT scan ordered by the pulmonologist this fall. The anesthesiologist needs to know about the test, why it was run, and what you've learned. I hope it's not a red flag. Please call me back.

I flipped shut my phone, and shoved a bag of buns into the cart. Okay, right. She's talking about the test that was run but wasn't technically ordered. The one that was supposed to be a chest CT only, but somehow ended up including the abdomen, too.

And found something.

Only a little something, according to the ordering physician. But here's the thing. The doc downplayed it. Said we could look into it after surgery. He wrote the surgical clearance. Shouldn't that be enough? Please let it be enough.

Since keeping a viable cell phone signal in our Jewel is nearly impossible, I returned the call on the drive home. And couldn't help but speak out loud my hope that surgery wouldn't be cancelled because of a question the anesthesiologist could have asked early last week, when the clearance was first faxed.

I used to love roller coasters.

edited to add:
On the way to the hospital with E to do a liver function test. Words to describe how I feel about this zero-hour test or the reported need for yet another clearance from the powers that be before the procedure's a go would be inappropriate to print here.

11 Reasons to be Thankful...and Counting

Here are 11 blessings in my life:

1. Fresh memories of a grand Thanksgiving, celebrated Saturday with family.

2. My Dad's release from inpatient rehab yesterday after knee replacement.

3. My mom and her hubby's safe arrival in Illinois, after a three-day relocation road trip from Arizona with a dog and cat in the back seat of their Blazer.

4. My Vermont College graduating class, the MVPs.

5. My critique group.

6. My church family.

7. Milk chocolate.

8. Chai tea.

9. Dark chocolate.

10. My best-friends-through-anything friends.

11. My hubby and best friend, P, without whom this journey would be unbearable.

Deep cleaning my attic place

A thought occurred to me late last night while deep cleaning my writing space for the first time since E's aneurysm. Maybe the reason I preferred working at the dining room table all this time wasn't so much about my oldest daughter's need for the Internet and quiet space in order to do homework. Maybe the reason I liked working downstairs reached deeper.

My dining room is located in the center of things. It's social and active, and filled with light, even during the darkest winter days. My office space, on the other hand, is the smallest of three upstairs bedrooms, with sloped ceilings and wooden floors, and two narrow windows that let in the afternoon light, but little more.

Before I moved my office downstairs to make way for my youngest daughter, I ran my consulting and PR business from the space. I wrote my columns, and planned my marketing campaigns, and designed newsletters, brochures, and annual reports.

The room was quiet, out of the way, a great place to focus, in many ways a perfect retreat...

Before E's aneurysm.

Since then it's felt less like a retreat and more like a storage room with a corner for a desk. Two walls and both closets were lined with boxes, papers, and books. Some of the clutter was set there the day we relocated my office upstairs so that E--unable to climb stairs on her own after the aneurysm--could move to the first floor.

The rest accumulated over the next four years. A hodge-podge of middle-school papers, clothes needing mending, old bills, and projects I planned to pursue once my life returned to normal.

Much of the materials were necessary: craft books on plotting, description, dialogue and story; Vermont College Residency notes; works in progress; advisor letters; critiques; revisions; creative thesis; critical thesis; children's books. Much of the rest was taking up space.

All had been waiting to be culled, organized, filed, catalogued, and shelved. When time permited, I kept telling myself. When time permited.

I didn't intend to leave the office disorganized for so long. But somewhere along the way the daily to-dos associated with E's recovery and recurrent illnesses took precedence. And then, after awhile--especially after starting the VC writing program--working around the boxes became commonplace.

I can't yet fully articulate what compelled me to confront my attic space yesterday. All I know is that the time had come. Here's an excerpt from one of the old notes I unearthed last night. It's a timeline of sorts, starting with the aneurysm rupture in July 2001:

July 1-aneurysm ruptures

July 2-aneurysm clipped

July 15-permanent brain shunt placed, not sleeping well at all

July 31-E released to Marianjoy Rehabilation Center for inpatient therapy

Aug. 7-back to University of Chicago, shunt infection, went septic, shunt removed, antibiotics started

Aug. 21--infection finally clears, shunt replaced

Sept. 7-released once again to Marianjoy inpatient care

Sept. 26-finally home, commute 5 day/week to rehab at Marionjoy

Oct 31--released from full-time out-patient care; return to school part-time, begin 3 day/week therapy after school at local Easter Seals

Edited to add:
I don't remember when I wrote the above timeline or why. What I do find curious is that unlike other times I've stumbled upon notes from the dark months after E's sudden illness, I can read the list and acknowledge it with a distance and clarity. The experience is a gift, one I'd given up on experiencing.

Appetite for writing:
Contented, focused. More focused than I've felt in a long, long time.

Fevers, rollercoasters, and Thanksgiving

E came home from school yesterday coughing and irritable. After shrugging off her coat, and burrowing beneath a blanket on the sofa, she wanted nothing more than a cup of tea. Sure enough, she'd spiked a fever. But only a slight one.

Figures, I thought. We're so close. Only days out from her aneurysm surgery. And now this.

While nursing my own steaming mug of tea, I considered the situation. Maybe E's day had been particularly trying. Her energy reserves are pretty low, and she tires easily. Or maybe the bus ride had worn her out. The ride home had taken extra long. And she'd come home wearing her hoodie and winter coat.

Then again, maybe she was truly coming down with something. Maybe surgery would be canceled. I lowered my tea, deciding it'd steeped too long.

The phone rang. Caller id came up unavailable. I picked up anyway. It was the surgeon's office calling with the results of the morning's lab tests.

"Good news," the nurse said. "The new labs look good. I'll page Dr. and let her know."

The labs looked good? Based on questionable labs obtained a week ago, we'd retaken them that morning, hoping for better numbers. So this was good news, right? Yet, on the sofa, E was sipping her tea and coughing.

"That's good to hear," I said to the nurse, "but you should know that E came home a bit wilty today."

"Oh, no. I hope we can do this now," she said. "We're entering cold and flu season."

"I know," I say, remembering E's non-stop illnesses last Winter. "I want this over with. We've waited too long already."

"Call us Monday."

"Will do."

E woke up fine this morning. No fever. No longer wilted. Thanksgiving's a go. Will be SO glad when I can exit this rollercoaster ride.

Family, Stories, and Early Thanksgiving

Since E will be recovering from surgery on Thanksgiving, we're planning to celebrate early. Festivities begin early Saturday afternoon, probably one ish, with dinner scheduled for later in the day.

Our menu so far:

1. Turkey.

Wouldn't be Thanksgiving without it. The 20-pounder's been defrosting in the fridge since Sunday. My fingers are crossed it's ready in time. Haven't decided yet whether to grill it or fry it. Both ways taste great.

Though grilling's definitely healthier, frying's fun and fast. Despite its size, the bird will fry up in less than an hour--so much faster than the time it'd take the traditional way--and then there's the benefit of setting up the big metal pot out in the yard. It's fun to huddle around the bird as its sizzling. It smells great, feels like camping, and gives everyone a chance to poke at the carcass while it cooks.

2. P and J's famous baked-cream-cheese potatoes with extra onions and garlic.

Haven't called them yet to see if they have time to make these...No problem, I'll just add it to my to-do list.

3. Mom's old-fashioned stuffing bake.

This dish is soooo good. In addition to breading drenched with turkey broth, it's chock full of sausage, nuts, and raisins. Yum.

Reminds me of my growing up days celebrating Thanksgiving at my Aunts' house. They lived in a two-flat located off Kimball Avenue just west of downtown Chicago. Their flat faced an old factory, a huge, hulking, behemoth of a building made of brownstone and dark windows. It was a predominantly Polish neighborhood back then. Folks sat on the steps out front, chatting or watching the cars go by. Each holiday promised a plate of blessed and unblessed kielbasa, and stuffing like Mom's.

Before dinner, with the promise of turkey and mashed potatoes grumbling in our stomachs, my sisters and I explored the nooks and crannies of the old place, marveling at the artifacts added to my aunts' collection from their latest trips abroad. There were dolls from Poland, glittering trinkets from the Istanbul market, leather sandals from Greece. And then there was Aunt Lee's closet. Pushing aside clothes and boxes and bags, we'd burrow from one end to the other. Magically, it seemed, it led from her room to her sister's.

Saturday, my sister C will make the stuffing. Mom would if she could, but won't be in a position to do so. She and hubby B will be traveling that day. After 15 years or so in Arizona, they're moving back to Illinois. Come Saturday they'll be somewhere on this side of the Colorado mountains. Mom expects to be back in time to sit with P and I at the hospital Wednesday. I bless the universe when things like this happen. The timing couldn't be better.

4. Cheesy broccoli rice casserole.

This dish is another family favorite. Probably came off the back of a Cheez Whiz box back in the 70s. No matter. There's just something about its cheezy gooey veggie taste. Haven't asked anyone to make this yet. Another thing to add to the list.

5. Oriental cole slaw.

My specialty. Also a must at every family get together. Imagine a huge bowl of fresh cole slaw. Add six chopped green onions, a cup of slivered almonds and sesame seeds browned and candied in a skillet. Toss the green onions and cole slaw mix with a zesty dressing--a mix of oil, lemon juice and oriental seasoning. Add a bag of ramen noodles for crunch. Top with the nut mixture. And voila!

6. Desert

Pumpkin pie ala Sara Lee, pumpkin roll ala SJ. (if she agrees to trade me one for a Frango mint fudge cake), and a Frango mint cake of our own. The cake's another specialty of mine. Imagine three layers of chocolate heaven. The bottom layer is a cake so rich and moist it alone takes one can of Hershey's chocolate syrup. The middle section is a thick layer of green mint butter cream frosting. The top layer is made from one cup of bitter sweet chocolate chips melted with so much butter that the sauce smooths into a thin layer over the green frosting, hardening into a candy shell over the entire cake. Totally decadent. Elena's favorite.

7. Family

The gathering will include aunts, uncles, cousins (four of them, plus my three girls), my dad (if he behaves well enough at rehab for his therapists to let him out to play), our golden retriever Buffy, our cat Mr. Ginger, lots of laughing, and stories. Always stories.

Makes me warm thinking about this weekend. Helps me remember where my stories come from.

Packing List

With the Big Day just over a week away, I've started a working list of things to pack. Here's some of what I plan to bring to the hospital (in no particular order):

1. Playing cards--because E loves to play War.

2. E's Hello Kitty CD/tape player--so she can listen to her favorite music intead of all the alarms and buzzers, and P and J can listen to Kitty Cash. Kitty Cash is a bit of an inside joke for my hubby and his younger brother. They spent many long nights together while sitting vigil in the pediatric ICU during E's first hospitalization. As I understand it, one night while listening to Johnny Cash on the Hello Kitty CD player, one of them decided Johnny needed a new name...

3. CDs for E--current faves include Aaron McCartney, Cheetah Girls, Grease, Hillary Duff, and Aly and AJ.

4. Instant anti-bacterial soap--for all the high touch surfaces--like the bed rails, doorknobs, phone, and TV/nurse call/remote that never got cleaned during the three months we were in the hospital back in 2001. No joke. We were with E 24/7 back then and the only time we saw staff truly deep cleaning anything was one day during our three months. One day. I asked what was up, and was told the accreditation people were coming in unannounced sometime that week. No wonder so many patients end up contracting superbugs while they're "recovering."

5. E's glow stick--This is a nifty little thing, a slender pink wand the length of a finger, attached to a silky black cord. Our pastor gave it to E after church this past weekend. It's a mini glow stick. She can wear it the day of surgery if she wants. And if anyone asks what it is she can tell them it represents love and light and healing. She has it packed already.

6. Tiger quilt--Given to E during her first hospital stay by her Aunt P and Uncle J. The quilt boasts a bold tiger print on one side, and bright pink, yellow, orange, green and blue design on the other. It's a perfect way to brighten up a hospital room.

7. My journal--I take it everywhere these days. Unloading in it is often a necessity before I can make progress on Keeper's Song.

edited to add:

8. Pop-tops. We must have thousands of them by now, collected from family and friends for Ronald McDonald House. When we stayed at the Ronald McDonald House near the University of Chicago Children's Hospital in 2001, volunteers told us recycling the pop tops raises enough money to cover most of the house's utility expenses. Not bad for one shiny bit of aluminum, huh? This time we'll be staying at the House near Children's Memorial. It's a short walk from the hospital, a beautiful stone home on a tree-lined street in Chicago's Lincoln Park neighborhood. Should be a welcome respite from all the bells and alarms. Website if you're interested in taking a look at what will soon be our home away from home: www.rmhchinorth.org.

Sharpening My Ax

Back before children, I lectured regularly about self-promotion and marketing for small businesses. One story I told often featured a man so driven to cut down enough trees for his woodstove for the winter that he forgot to sharpen his ax, and in the end collected far less than he needed to keep his family warm.

The moral of the story: to increase your chances of success in life or business, take time out for yourself. Sharpen your ax or risk failure. Time out might mean taking a class or two to grow your skills or keep them updated. Time out might mean reading regularly in your field of expertise. Time out might mean taking time away to help bring perspective to a situation.

Last Saturday, I sharpened my ax by attending the Illinois SCBWI (Society of Children's Book Writers and Illustrators) First Annual Prairie Writer’s Day at Dominican University in River Forest. The event featured talks on a variety of topics, a panel of acquiring editors, and one acquiring agent. Two of the sessions focused on trends in children’s publishing, and what’s new in kid lit. Another featured author-editor teams, and discussions about their working relationships. My favorite part of the day was the segment in which editors responded to anonymous first pages of manuscripts after they were read to the audience.

I imagine the editors felt a bit uncomfortable with the silence that followed some of the readings, but I’m so grateful they played along. Hearing their off-the-cuff reactions to what hooked them, what irked them, and why, gave me invaluable insights into my own work.

One of the first pages was my own. In the end, after they discussed the questions my opening had raised, they all wanted to read more.

I arrived home feeling energized about the day. A big reason why: attending the conference gave me permission to wear my writer’s hat the entire day without guilt.

Appetite for writing today: Ravenous.

S and E and Blue, Oh My!

When my youngest daughter S was three or four, I discovered a stuffed, floppy eared dog buried deep in the bargain bin of the Wal-Mart across town. The little dog was sky blue, small enough to fit comfortably into a child's hand, and stuffed with tiny beans that shushed when you hugged it close.

I had no idea what S would think of it. At the time, she was mourning the loss of her pink Beanie Baby octopus, Inky, and despite a parade of possible replacements, no other candidate had passed muster. Yet, while considering the little dog, I couldn't help but believe it might be the one.

You see, S had a favorite cartoon character at the time. Blue, a quirky, lovable little dog from Nickelodeon's children's show, Blue's Clues. The more I considered the cuddly Wal-Mart version, the more it reminded me of Blue. I dropped it in the shopping cart, gathered up the last items on my list, and hoped.

S adopted the dog immediately, christened it Blue, and took it everywhere. Would have taken it to school if I allowed it.

Six years later, Blue is tattered and faded, and every six months or so, we darken her black eyes with a permanent marker. Despite her appearance, she holds a place of honor on S's bed, and participates in a morning ritual that I wish I could bottle up and uncork whenever I needed it.

"Blue-wee," S calls out to her sister E as they lounge in bed before school.

"Arf-arf-arf," E says in a high-pitched voice.

"Blue-wee," S calls out as she climbs down from her loft bed to rummage through drawers for a shirt and jeans.

"Arf-arf," E says.

Often, the game continues outside the bedroom. S might be brushing her teeth, E pulling on her shoes.

"Blue-wee," S says, her mouth full of toothpaste.

"Ar-arf!" E says inbetween giggles.

Back and forth they echo, like dolphins sounding out each other's position. Sisters. Best friends. S and E. E and S. Though they are nearly five years apart, they share a bond many would envy.

I cannot imagine one without the other. I pray I don't have to.

Appetite for writing: Yep, surprisingly, I have one. Keeping my journal close. Snippets of memories spill forth. One I must explore: S's need to be near E the first time she returned from the hospital (after being gone for three months). S dragged her sleeping bag into E's room and slept there for weeks, returning to her own room only long enough to get new clothes or pjs. Her need to be near E was so intense, we finally moved her into E's room for good. They've been together ever since.

First Case

Took a call from the surgeon’s nurse yesterday. We’d been playing telephone tag since late last week. Turns out, E’s the first case in the OR the day before Thanksgiving.

“First case?” I heard myself say. “What time is that?”

“7:30 a.m., but we’ll need E here earlier to get her prepped.”

My cell phone's a tiny little thing, but it suddenly weighed heavily in my hand. I grabbed for a scrap of paper, steadied the phone as I scribbled down notes. “When should we be there?”

“Six should give us enough time to draw our final labs.”

More labs? They’ve already asked us to do a blood draw locally within the next week. “What are those for?”

“The lab needs to do a type and cross within three days of surgery. You live pretty far away. I thought it might be easier all around to come in a little earlier, and save yourself a trip.”

We’d been planning to leave at o’dark thirty that day anyway to beat the going-into-Chicago morning traffic. “What’s the test for?”

“The OR needs four units of blood on hand in case they’re needed during surgery. The type and cross will tell them what kind they need to put aside.”

“Blood?” My voice went so soft, I’m not sure whether I thought it or said it.

“It’s routine for this type of surgery. In case there’s bleeding.”

I don’t check my heart rate, but I bet it’s beating faster. Blood? The thought of saying the word again leaves me feeling faint. “We can do that,” I hear myself answer in a steady, business-like voice. “We were going to have to leave pretty early anyway to get there on time. Anything else you need from us?”

The nurse continued, assuring me I didn't need to write anything down because a checklist will be mailed our way. I took notes anyway. Anything to slow my racing brain.

The night before surgery E will need to fast, and she’ll need to take a shower with antibacterial soap.

“Let her soak in it,” the nurse said. “It takes five minutes to have any lasting effect. Really work up a lather in her hair. We want to minimize the chance of infection.”

Lather up her head. Made sense. The surgeon will make the incision at the peak of her forehead in the same place it was made before. Near the place where the first anuerysm burst. Near the place where it was clipped and another now grows.

The first time E had surgery a shunt infection set in, though no one knew it for weeks. She didn’t present with the typical signs. No fever. No headaches. Nothing. Until one night, less than a week into rehab she presented with a fever. Her temp went from normal to 105 in less than an hour.

E was rushed from rehab to the local hospital. From there she was flown by helicopter back to University of Chicago. The infection had been brewing for so long her blood had gone septic. We're told pus poured out when docs opened E up to remove the offending piece of equipment.

Docs began antibiotic therapy. The bacteria refused to die. They’d become like the Borg, assimilating her good guy white cells then encapsulating themselves inside their shells. They resisted antibiotic therapy until the doctors brought out the big gun antibiotics. Took weeks before we felt confident E would survive their assault.

Antibacterial soap? I’m in. I’ll fill the tub with it. Anything to lower our chances of journeying that level of Hell again.

Appetite for writing: Are you kidding?

Trapped in the inbetween place

I hate being trapped in this inbetween place. Perhaps because I’ve spent far too much time here. Waiting for E to awaken from her coma after her aneurysm bleed. Not knowing if she’d recognize us when she did. Waiting for results of each follow-up MRI to learn whether or not a new aneurysm had sprung up. Waiting to hear whether this blood test or that would come back normal. Worrying that each headache will herald another frantic trip to the ER.

Now, we're waiting again. For The Big Surgery the day before Thanksgiving.

I hate it. I hate the waiting. I hate the worrying. I hate not knowing what road we will be asked to travel.

Show me the road, and, though it will likely be rocky and uncharted, I’ll take lead. Just don't leave me alone in this place. The door no longer opens from the inside. Each day the walls close in. The inbetween place throbs like a splinter lodged too long beneath the skin.

How selfish I must sound. I’m not the first person who's been forced to endure this place, and cope with not knowing what the next day will bring.

Hundreds of men and women fight overseas in a war that’s gone on far too long. Yet, somehow, their loved ones summon the strength to move through their days, despite the worry that the next knock on the door will be news they’ve feared. Thousands sit vigil at a loved one's bedside, not knowing whether or not they'll survive another day. Then there are those living with cancer. How does my sister live with the knowledge that any day her cancer might return?

I should be celebrating each and every minute of this Time Before Surgery. But seizing the moment 24/7 looks easier on paper.

There are still bills to pay, appointments to schedule, and deadlines to make. And then there are weeks like this one. E’s been sick since Sunday, needing round the clock meds to keep her fever controlled.

Maybe her dependence on others the last few days has reminded me of how far she’s come, and how hard she’ll have to work after surgery to reclaim herself. Fear of the road comes easily knowing she may never reclaim who she is, knowing we might again be called to mourn the loss of the daughter we once knew.

My inner critic has escaped its cage. It cackles from its perch on my shoulder. "Why write anything creative?" it whispers in my ear, "when it'll be weeks if not months before you can finish it? "

E has never lingered in the inbetween place. I honestly don’t think she knows it exists. By the grace of God, she walked away from her illness in 2001 with an amazing sense of humor and the ability to live fully in the moment.

I suppose all children are born with this blessing. The ability to immerse oneself totally in the now. Maybe this is one of the reasons so many of us want to write for children. Perhaps our stories are one small way for us to reclaim our childhood--to make right what went wrong in our world, and to celebrate what's good and true.