I plan to bring along the following tomorrow for our visit to Dr. L:
1. Backback--for my stuff and E's. E does pretty well on her own with cane in hand, but she's sure to need an extra hand navigating the sidewalks in and around Children's Memorial once tomorrow's snowstorm starts.
2. Files--multiple--containing all my notes, copies of tests, medical records, etc. about Elena's old aneurysm and her current one.
3. Playing cards--S's Winnie-the-Pooh deck if she'll let us--for all the waiting I'm expecting to do. (And I have to admit, having those particular cards with us tomorrow makes sense on so many different levels.)
4. Book to read (after E tires of playing War). Already packed: Goodbye, Charley by VC classmate and fellow graduate, Jane Buchanan.
5. Meds--E's--in case the heavy part of the storm hits during our drive back, and E ends up needing her afternoon dose before we get home.
6. Cooler--with snacks and drinks--so we're not caught empty-handed should we get stuck in traffic on the drive back from downtown Chicago.
7. Barbara Park's books on tape, Cheater Pants and One-Man Band, in case E tires of her Cheetah Girls' Cheetah-licious Christmas CD.
Tuesday, December 13, 2005
Switching Gears
Shortly after loading E onto the bus with her scooter this am, I received a call from the kidney specialist's office. We had a cancellation, the scheduling secretary says. Doctor L can meet with E tomorrow morning. Do you want the appointment?
My mind's racing at this point. Meeting with Dr. L tomorrow rather than January 4th gives us that much more time to do any of the tests he'll need in order to "clear" E for surgery. Not that we have a surgical date yet, but I'm still holding out for the sometime-in-January date the lead surgeon gave us. And meeting with Dr. L means there's one less hurdle on our end to scheduling something.
"I think that might work," I answer, then tense as I scan the family calendar for tomorrow's agenda. Shit. Tomorrow's the school field trip. The one to the glorious theater production of "A Christmas Carol" at the Paramount.
E missed nearly every field trip last year because of illness. But this year's she's been on a roll. She's been feeling great. Tomorrow was a go. She was looking forward to her first outing of the school year with friends.
Poor E.
My inner Eeyore moans at this sudden change of plans; but, knowing E, she'll probably see the trip downtown as an excuse to seek honey.
My mind's racing at this point. Meeting with Dr. L tomorrow rather than January 4th gives us that much more time to do any of the tests he'll need in order to "clear" E for surgery. Not that we have a surgical date yet, but I'm still holding out for the sometime-in-January date the lead surgeon gave us. And meeting with Dr. L means there's one less hurdle on our end to scheduling something.
"I think that might work," I answer, then tense as I scan the family calendar for tomorrow's agenda. Shit. Tomorrow's the school field trip. The one to the glorious theater production of "A Christmas Carol" at the Paramount.
E missed nearly every field trip last year because of illness. But this year's she's been on a roll. She's been feeling great. Tomorrow was a go. She was looking forward to her first outing of the school year with friends.
Poor E.
My inner Eeyore moans at this sudden change of plans; but, knowing E, she'll probably see the trip downtown as an excuse to seek honey.
Thursday, December 08, 2005
Checking In, and searching for honey with Pooh
No word yet on a new date for the surgery.
The lead surgeon's office has been playing telephone tag with the other surgeon since the Monday after Thanksgiving. (By the way, the lead surgeon has said she won't--absolutely won't--operate until the other surgeon is at her side. If that means waiting till March when he's free, we wait till March. The lead doc thinks we shouldn't have to wait that long.) The best I can get from her office for a target date is sometime in January. Until then we're to go about as usual.
Whatever that is.
My inner Eeyore wants to crawl back under the covers. My inner Pooh wants to use our free time to go out searching for honey. I'm heading out in search of honey. Our local SCBWI group meets this am.
I SOOOO need this meeting.
The lead surgeon's office has been playing telephone tag with the other surgeon since the Monday after Thanksgiving. (By the way, the lead surgeon has said she won't--absolutely won't--operate until the other surgeon is at her side. If that means waiting till March when he's free, we wait till March. The lead doc thinks we shouldn't have to wait that long.) The best I can get from her office for a target date is sometime in January. Until then we're to go about as usual.
Whatever that is.
My inner Eeyore wants to crawl back under the covers. My inner Pooh wants to use our free time to go out searching for honey. I'm heading out in search of honey. Our local SCBWI group meets this am.
I SOOOO need this meeting.
Wednesday, December 07, 2005
Because It was a Book First
In honor of the upcoming movie release of C.S. Lewis' classic, The Lion, the Witch and the Wardrobe, I sat down with my youngest girls, E and S, last night to read them the book that inspired it all.
"Once there were four children whose names were Peter, Susan, Edmund and Lucy. This story is about something that happened to them when they were sent away from London during the war because of the air-raids."
So begins C.S. Lewis' fantastical tale. Not the most memorable opening in a children's book. Yet, the silence that descended on the girls as I read chapter one was undeniable. Even the ticking of the Winnie-the-Pooh clock on S's nightstand seemed intrusive.
What hooked my girls so early on? I couldn't depend on them to articulate the reasons. An "I liked it, that's why" was the best I could expect, given their ages. And besides, the lights were out, and it was way past bedtime.
My guess is that they empathized with Peter, Susan, Edmund and Lucy because they were living away from home when something "happened to them." I suspect my girls were drawn to the reassuring, story-telling point of view of the omniscient narrator. And I wonder if they heard the promise of intrigue and adventure woven so seamlessly into the opening pages of the story.
By the end of page one, for example, we learn Lucy was "a little afraid" of the old Professor, despite her siblings' willingness to accept him. By the top of page three, we read that from Lucy's point of view the Professor's house is filled with "long passages and rows of doors leading into empty rooms" that leave her feeling "a bit creepy."
And then there's the wonderful tension Lewis builds. There's no denying the skillful way he contrasts Lucy's unease with her sister's and brothers' welcoming attitudes. "This is going to be perfectly splendid," Peter says of their new home."I think he's an old dear," Susan says of their host.
Lewis' novel is a first read for me. Like my girls, I was hooked before the end of page one. (So much so that I plan to steal into the girl's room tonight after they've gone to sleep so I can secretly read ahead. And analyze more about what's working and why.)
Note to self:
Remember to read aloud more often, especially those authors I admire most.
"Once there were four children whose names were Peter, Susan, Edmund and Lucy. This story is about something that happened to them when they were sent away from London during the war because of the air-raids."
So begins C.S. Lewis' fantastical tale. Not the most memorable opening in a children's book. Yet, the silence that descended on the girls as I read chapter one was undeniable. Even the ticking of the Winnie-the-Pooh clock on S's nightstand seemed intrusive.
What hooked my girls so early on? I couldn't depend on them to articulate the reasons. An "I liked it, that's why" was the best I could expect, given their ages. And besides, the lights were out, and it was way past bedtime.
My guess is that they empathized with Peter, Susan, Edmund and Lucy because they were living away from home when something "happened to them." I suspect my girls were drawn to the reassuring, story-telling point of view of the omniscient narrator. And I wonder if they heard the promise of intrigue and adventure woven so seamlessly into the opening pages of the story.
By the end of page one, for example, we learn Lucy was "a little afraid" of the old Professor, despite her siblings' willingness to accept him. By the top of page three, we read that from Lucy's point of view the Professor's house is filled with "long passages and rows of doors leading into empty rooms" that leave her feeling "a bit creepy."
And then there's the wonderful tension Lewis builds. There's no denying the skillful way he contrasts Lucy's unease with her sister's and brothers' welcoming attitudes. "This is going to be perfectly splendid," Peter says of their new home."I think he's an old dear," Susan says of their host.
Lewis' novel is a first read for me. Like my girls, I was hooked before the end of page one. (So much so that I plan to steal into the girl's room tonight after they've gone to sleep so I can secretly read ahead. And analyze more about what's working and why.)
Note to self:
Remember to read aloud more often, especially those authors I admire most.
Tuesday, December 06, 2005
As the Muse Turns
My muse has been unpredictable lately as we ride this roller coaster with E.
Some days, it awakens as soon as I summon it, eager to make suggestions as I re-vision my work-in-progress. Some nights, it awakens me from sleep, eager for me to find a pen. Other times--more often than I'd like to admit, my muse refuses to surface, and I wonder whether or not I'll ever find the words I need to make sense of the world.
To understand my process (and come to terms with it), I've turned to a number of craft books. Some are rereads. Some are new reads. Most all were purchased during one Vermont College MFA in Writing for Children Residency or another based on recommendations by friends and faculty. They are:
bird by bird by Anne Lamott
Writing Past Dark by Bonnie Friedman
The Writing Life by Annie Dillard
Writing Down the Bones by Natalie Goldberg.
I'm particularly fond of an essay called "Write Anyplace," from Writing Down the Bones. Goldberg launches the piece with a long list of excuses and reasons why we don't write, why we can't write, why we won't write.
"Okay," Goldberg says in the opening paragraph. "Your kids are climbing into the cereal box. You have $1.25 left in your checking account. Your husband can't find his shoes, your car won't start, you know you have lived a life of unfulfilled dreams. There is the threat of the nuclear holocaust..." And so on and so on.
The litany of excuses rings true on so many different levels. Lately, instead of writing, I give in to the siren's call of laundry and dishes and clutter clean-up, answer the phone instead of letting the machine pick up, surf from one blog to another--just one more--instead of focusing on my work-in-progress, and I mull over E's health files and reports as if I will find a miracle solution the doctor has overlooked.
I reread Goldberg's list, nodding all the while. I've been there. Done that. I've made lists. If I put them end to end they'd fill an entire chapter of her book, if not the entire book.
Goldberg doesn't end the essay with her list. She throws the litany down on the page like a gauntlet, then utters the following challenge:
"In the middle of the world, make one positive step. In the center of chaos, make one definite act. Just write. Say yes, stay alive, be awake. Just write. Just write. Just write."
I closed the book, pushed away from the sofa, paced from the living room to the dining room and back again. Stared out the picture window. Watched the snow drifting to the ground, felt the chill pane beneath my hand, heard the click of our golden retriever nails on the hardwood floor. Buffy's warm body leaned against mine. Her cold nose nudged my hand.
"In the center of the chaos...Just write. Just write. Just write."
I combed my fingers through Buffy's ruff. All this time I've believed my muse the problem child. All this time, I've believed it uncooperative.
Goldberg's essay suggests my muse hasn't been the problem. Following her logic, my muse has been waiting and willing all along. All it's ever wanted is to write. To make sense of the chaos. To claim it by making "one positive step (...) one definite act."
All this time, I've been puttering at my keyboard, giving in to my guilt over not writing more, comparing my process to others. Granting my inner critic too much power.
I'm reminded of Jane Resh Thomas' advice for taming the inner critic.
* Write a list of all your fears and regrets.
* Burn the list and collect the ashes.
* Take note of how little space they take. Remember how little they weigh as they pour down from your hand.
The semester I had Jane for an advisor, she gave each of us a tiny enamel box crafted in the shape of a butterfly. The box fit into the palm of my hand. Store your fears in the box, she said, so you no longer need to carry them.
My fears never overflowed that box when I used it. Despite the lists I made, the butterfly was always big enough to hold the ashes.
Time to write my list. Time to write it and burn it and summon my muse.
Some days, it awakens as soon as I summon it, eager to make suggestions as I re-vision my work-in-progress. Some nights, it awakens me from sleep, eager for me to find a pen. Other times--more often than I'd like to admit, my muse refuses to surface, and I wonder whether or not I'll ever find the words I need to make sense of the world.
To understand my process (and come to terms with it), I've turned to a number of craft books. Some are rereads. Some are new reads. Most all were purchased during one Vermont College MFA in Writing for Children Residency or another based on recommendations by friends and faculty. They are:
bird by bird by Anne Lamott
Writing Past Dark by Bonnie Friedman
The Writing Life by Annie Dillard
Writing Down the Bones by Natalie Goldberg.
I'm particularly fond of an essay called "Write Anyplace," from Writing Down the Bones. Goldberg launches the piece with a long list of excuses and reasons why we don't write, why we can't write, why we won't write.
"Okay," Goldberg says in the opening paragraph. "Your kids are climbing into the cereal box. You have $1.25 left in your checking account. Your husband can't find his shoes, your car won't start, you know you have lived a life of unfulfilled dreams. There is the threat of the nuclear holocaust..." And so on and so on.
The litany of excuses rings true on so many different levels. Lately, instead of writing, I give in to the siren's call of laundry and dishes and clutter clean-up, answer the phone instead of letting the machine pick up, surf from one blog to another--just one more--instead of focusing on my work-in-progress, and I mull over E's health files and reports as if I will find a miracle solution the doctor has overlooked.
I reread Goldberg's list, nodding all the while. I've been there. Done that. I've made lists. If I put them end to end they'd fill an entire chapter of her book, if not the entire book.
Goldberg doesn't end the essay with her list. She throws the litany down on the page like a gauntlet, then utters the following challenge:
"In the middle of the world, make one positive step. In the center of chaos, make one definite act. Just write. Say yes, stay alive, be awake. Just write. Just write. Just write."
I closed the book, pushed away from the sofa, paced from the living room to the dining room and back again. Stared out the picture window. Watched the snow drifting to the ground, felt the chill pane beneath my hand, heard the click of our golden retriever nails on the hardwood floor. Buffy's warm body leaned against mine. Her cold nose nudged my hand.
"In the center of the chaos...Just write. Just write. Just write."
I combed my fingers through Buffy's ruff. All this time I've believed my muse the problem child. All this time, I've believed it uncooperative.
Goldberg's essay suggests my muse hasn't been the problem. Following her logic, my muse has been waiting and willing all along. All it's ever wanted is to write. To make sense of the chaos. To claim it by making "one positive step (...) one definite act."
All this time, I've been puttering at my keyboard, giving in to my guilt over not writing more, comparing my process to others. Granting my inner critic too much power.
I'm reminded of Jane Resh Thomas' advice for taming the inner critic.
* Write a list of all your fears and regrets.
* Burn the list and collect the ashes.
* Take note of how little space they take. Remember how little they weigh as they pour down from your hand.
The semester I had Jane for an advisor, she gave each of us a tiny enamel box crafted in the shape of a butterfly. The box fit into the palm of my hand. Store your fears in the box, she said, so you no longer need to carry them.
My fears never overflowed that box when I used it. Despite the lists I made, the butterfly was always big enough to hold the ashes.
Time to write my list. Time to write it and burn it and summon my muse.
Friday, December 02, 2005
Waiting Game, Part Deux
We finally connected with E's lead neurosurgeon last night. Bottom line: January is likely the soonest the surgery will take place.
January? *Sighs and lowers her head* Another month?
Another month.
The grateful mom side of me is thrilled we'll have an uninterrupted holiday season. The worried mom side wants the surgery over with yesterday so we can learn what the universe has in store for us this time. The protective mom part of me stares at the phone incredulous.
But, doc, I want to say for the umpteenth time, we've first-hand knowledge of an aneurysm rupture. We've lived the downsides.
There was that bright humid day in July 2001 when we raced after that helicopter, wondering if E would still be breathing when we arrived at the hospital. And the chaplain who met us at the door. Not to tell us that she'd died, as we feared, but to tell us she was very, very sick.
We prayed by E's bedside that day and for days to follow, not knowing if she'd awaken from her coma, not knowing whether she'd recognize us if she did. Weeks later, we held E's hand as she pulled herself up to sitting for the first time, too weak to stay up more than a second or two because her muscles had atrophied from two months in bed.
Four years E has traveled this road, re-learning how to sit and stand and walk and talk. Four years, doc. Four long years. Knowing the downsides, you'd think clipping an existing aneurysm would be considered an emergency.
It's not.
Seems so counter-intuitive, hearing the doctor say the clipping of E's aneurysm is considered an elective procedure. Yet, the fact is--and this is the rest of what the lead surgeon reminded P of yesterday--the risks inherent with this type of surgery are extremely high.
Preparations must be deliberate and planned. All possible complications--however remote--need to be investigated beforehand to increase E's chances of success.
Breathing.
Counting down from ten to one.
Centering.
Reminding myself that our children are on loan to us from God. Praying that the last red flag was raised because docs needed to know about it. And have time to investigate it before something awful happens. Because E's journey here on earth is not yet over.
Here are just a few of the very real risks inherent in the clipping of a cerebral aneurysm:
* E could bleed out during the procedure, the aneurysm rupturing too quickly for docs to react.
* The procedure could result in stroke or seizure or both during the surgery, or in the days immediately following the operation.
* The kidneys could be compromised because of the stress on her system.
* The surgery itself might raise E's blood pressure dangerously high, resulting in another kind of bleed or rupture.
* The surgery could introduce enough tissue into her internalized brain shunt that it becomes plugged or infected within days or weeks after the surgery.
* The surgery is long--every bit of 6 hours--increasing the chance of complications.
* Add to these risks the fact that E is a primordial dwarf, one of a very very small group of individuals (less than 50 known individuals exist world-wide with her type of dwarfism) with health issues that are yet to be fully understood.
It's sobering seeing this list on paper. And a reminder to all my mom sides of how blessed we've been to have come this far. Given the risks, I praise the fact that E's physicians are willing to take them.
And respect their need to take all the time they need to be prepared.
January? *Sighs and lowers her head* Another month?
Another month.
The grateful mom side of me is thrilled we'll have an uninterrupted holiday season. The worried mom side wants the surgery over with yesterday so we can learn what the universe has in store for us this time. The protective mom part of me stares at the phone incredulous.
But, doc, I want to say for the umpteenth time, we've first-hand knowledge of an aneurysm rupture. We've lived the downsides.
There was that bright humid day in July 2001 when we raced after that helicopter, wondering if E would still be breathing when we arrived at the hospital. And the chaplain who met us at the door. Not to tell us that she'd died, as we feared, but to tell us she was very, very sick.
We prayed by E's bedside that day and for days to follow, not knowing if she'd awaken from her coma, not knowing whether she'd recognize us if she did. Weeks later, we held E's hand as she pulled herself up to sitting for the first time, too weak to stay up more than a second or two because her muscles had atrophied from two months in bed.
Four years E has traveled this road, re-learning how to sit and stand and walk and talk. Four years, doc. Four long years. Knowing the downsides, you'd think clipping an existing aneurysm would be considered an emergency.
It's not.
Seems so counter-intuitive, hearing the doctor say the clipping of E's aneurysm is considered an elective procedure. Yet, the fact is--and this is the rest of what the lead surgeon reminded P of yesterday--the risks inherent with this type of surgery are extremely high.
Preparations must be deliberate and planned. All possible complications--however remote--need to be investigated beforehand to increase E's chances of success.
Breathing.
Counting down from ten to one.
Centering.
Reminding myself that our children are on loan to us from God. Praying that the last red flag was raised because docs needed to know about it. And have time to investigate it before something awful happens. Because E's journey here on earth is not yet over.
Here are just a few of the very real risks inherent in the clipping of a cerebral aneurysm:
* E could bleed out during the procedure, the aneurysm rupturing too quickly for docs to react.
* The procedure could result in stroke or seizure or both during the surgery, or in the days immediately following the operation.
* The kidneys could be compromised because of the stress on her system.
* The surgery itself might raise E's blood pressure dangerously high, resulting in another kind of bleed or rupture.
* The surgery could introduce enough tissue into her internalized brain shunt that it becomes plugged or infected within days or weeks after the surgery.
* The surgery is long--every bit of 6 hours--increasing the chance of complications.
* Add to these risks the fact that E is a primordial dwarf, one of a very very small group of individuals (less than 50 known individuals exist world-wide with her type of dwarfism) with health issues that are yet to be fully understood.
It's sobering seeing this list on paper. And a reminder to all my mom sides of how blessed we've been to have come this far. Given the risks, I praise the fact that E's physicians are willing to take them.
And respect their need to take all the time they need to be prepared.
Location, Location, Location
What a difference a change in location makes. Writing from Panera Bread this morning. The bottomless, steaming cup of green tea is a welcome respite given today's near-zero wind chill. And the steady stream of people buzzing in and out sounds and feels like a vibrant community.
Puts me in mind of Capitol Grounds, the great coffee bar located near the capitol dome in downtown Montpelier, Vermont. It's a common gathering place for Vermont College students looking for a decent cup of coffee, tea, latte or iced chai. And it's a good excuse for an outing during Residency--winter or summer.
I've a feeling my reminiscing about Vermont College today is stronger than usual for a number of reasons. First, I finally finished my first run through of Kathi Appelt's lecture on controlling belief and character. Very compelling ideas she sets forth on the need for all characters in children's books to hold one controlling belief. With it, an MC can drive a story. Without it, an MC becomes so passive, a story will drive her. Hmmm. I plan to listen again before making a more complete post on the subject.
Another reason for my VC musings: Cynthia Leitich Smith's online interview with writer and Vermont College MFA in Writing for Children faculty chair Kathi Appelt about the VC MFA in Writing for Children program. Makes me faklempt and proud and so honored to have had the opportunity to experience VC. Surf on over and take a look. It's good reading.
Puts me in mind of Capitol Grounds, the great coffee bar located near the capitol dome in downtown Montpelier, Vermont. It's a common gathering place for Vermont College students looking for a decent cup of coffee, tea, latte or iced chai. And it's a good excuse for an outing during Residency--winter or summer.
I've a feeling my reminiscing about Vermont College today is stronger than usual for a number of reasons. First, I finally finished my first run through of Kathi Appelt's lecture on controlling belief and character. Very compelling ideas she sets forth on the need for all characters in children's books to hold one controlling belief. With it, an MC can drive a story. Without it, an MC becomes so passive, a story will drive her. Hmmm. I plan to listen again before making a more complete post on the subject.
Another reason for my VC musings: Cynthia Leitich Smith's online interview with writer and Vermont College MFA in Writing for Children faculty chair Kathi Appelt about the VC MFA in Writing for Children program. Makes me faklempt and proud and so honored to have had the opportunity to experience VC. Surf on over and take a look. It's good reading.
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