VeeGee Update

It's been a while since I posted anything, (I've noticed that many blog posts by many bloggers begin that way, as if the multitude of readers hadn't noticed, or, rather, as if they cared). Anyhow, we are careening into summer and really looking forward to the break from school, for both VeeGee and me. I just graduated with my MFA in creative writing, have been on the job market for a while, to no avail, and have decided to go ahead and enroll in the PhD program. Partly, that's because I want to continue to delay paying back student loans, and partly because, well, I'd like to be a doctor. In response to that lovely Commerical Appeal comment section dude who suggested I was selfish to pursue education, well, face palm.

Since the last post, and the hoo-ha surrounding the health care debate, I've been reluctant to share our story any further, at least in this context. But, so many incredibly lovely friends have asked about what's going on that I thought I'd go ahead and do an update. I really appreciate, can't even express how much I appreciate, the support and love we have received from our amazing community. We're so grateful to have so many lovely friends who've been so generous to us.

There is no doubt that this life we've got is difficult. But I have no delusions or suppositions that what we experience is really all that special. People tell me all the time that we're heroes and stuff like that. I feel very strongly that this is not the case. We're people who put one foot in front of the other. And we're fortunate in ways that so many are not. That fortune is not because we are specially gifted by God because of who we are. It's simply a result of the crapshoot of life.

On the Health Front:

Hmm, where to begin? In February, we noticed a pin-sized hole in her trach stoma and I pretty much freaked. Turns out it must have been there all along. The method that the doc used to close her trach was to simply pull it out and allow it to close on its own. Typically it closes up like any other wound would. Apparently, hers didn't close completely. She has a cough of unknown origin (pulmonary/gastrointestinal, we don't know for sure). It is an extremely high-pressure cough; I can't really describe it any other way except that it sounds like she's trying to get something out of her throat. We think that the frequent retching (a result of GERD, for which we had a nissen fundoplication performed) paired with her pulmonary issues (she has "dirty lungs," whatever that means) cause the cough, and further caused the hole to get large enough for us to see it. There's a tiny whistle that we can hear when she coughs now, and we've occasionally noticed droplets of water on her neck after she drinks.

When we took her to the doc (post haste!) to see about this, it was suggested that we needed to get a handle on the cause of the cough, and try to get it under control, as repairing the trach hole would be moot, and even dangerous, if the cough causes pressure to build up in her throat. It could cause further, and more serious, injury. So, her doctor (an awesome ENT out of Vanderbilt), ordered a battery of tests, including a sleep study and a genetic study.

The sleep study revealed serious apnea, in addition to frequent waking. Also, she does not go into REM for any length of time at all. The supposition is that the apnea could be the result of the pharyngeal flap that we had last April. It has since been confirmed through a nasal endoscopy that the air pockets created by the flap are extremely small. Also shown, and this relates to speech not as much to the flap, she has no coronal closure (sorry, I really can't explain that) and minimal palatal movement. All that means is that she's hypernasal on some consonants and hyponasal on others.

So, the bad news relative to that is that there is going to have to be a "revision" of the p-flap. And what THAT means is that she will lose some of her ability to speak. At first we were pretty distraught by that information, but then we realized that this little one is going to figure out how to communicate no matter what. (She's a champ!) The surgeon thought that, maybe, taking her tonsils out would help, however it appears that her tonsils are pretty much nonexistent. SO, we're waiting to find out when he's going to schedule surgery, and hoping it will be soooooon, since the recovery for this one is going to be significant. Unfortunately, we don't have another consult appointment until June 9th. Ugh.

After that, she will have the trach stoma repaired, or, as that surgeon says, "revised." What they'll do with that is cut open a larger hole into her trachea and place another tracheotomy. Then they'll take it out and allow it to heal like it was supposed to at first. I don't really understand why they do it that way instead of just stitching it up. He's the doc though.

The genetic testing revealed that she has "extra genetic material on the long arm of her 14th chromosome." There have not been any other recorded cases of this particular anomaly, and we do not know what that means for her in terms of development potential. The doctors do think that this explains the multiple layers of disability with which she presents. One thing we do know, and we're sad about this, is that it will impact her decisions on having biological children, though we know better than anyone that children come in different ways. So, we may have the joy of extending our line through adoption once again. Of course, this is SO FAR in the future that it's almost silly to speculate about such things.

At the same time as all of this, two other things are happening. First, we are still trying to manage the retching and the, um, pooping. So, both "ends" are being addressed by still another doc, a GI. The reason this is so serious is because she's not gaining weight, hasn't gained anything in about six months. The problem is that, because she retches so severely when full, and because she can't eliminate successfully (and is therefore ALWAYS full), she's at the limit of her daily volume intake. She gets about 1000 calories a day through her g-tube, and about 100 calories a day via baby food and juice. You'd never know she's not "thriving" though, because she's a pistol and is just the funniest thing ever.

The other, probably lowest on the totem pole, is her dental issues. Because of years of almost-constant vomiting plus years of antibiotics and other meds plus severe oral aversion (making brushing a nightmare), her teeth are in BAD shape. The dentist found at least three cavities yesterday, but was unable to continue looking because, well, VeeGee kicked him in the crotch a few times. She's going to have to be put under general anasthesia to do any cleaning or fillings, and, since the only anesthesiologists that will touch her are in Nashville, we've added another long-haul doc to our list. I feel better with her being in Nashville for anything involving airway stuff anyway, so I'm kind of glad that it's worked out that there's a dentist who's already worked with our otolaryngologist who's willing to take her on.

On the Insurance Front:

We lost the appeal through TN Care, but were approved for SSI, contingent on my not taking a job (K's income bumps up against the maximum amount for qualification). We get a whopping $16/month in SSI payments, but that's the only way we can keep her TN Care. We weren't concerned about the amount, just the qualification.

So, in some sense, it's really just a stay of execution. If I'm going to work, I have to find a job where the insurance group is big enough to not be devastated by Virginia Grace's addition. I would also need to make enough where the cost of the premiums + the co-pays, not to mention the continued multiple trips to Nashville per month, would not further devastate us. Which means, I'd have to make a pretty penny.

We're really grateful for the additional time at this point, though, as she's got three major issues that need to be addressed within the next three months or so (at least two surgeries). We're just trying to take it one day at a time, clinging to each other, and feeling so blessed that she's a part of our lives.

AND THE FUN STUFF!!!

• She was voted "Most Improved Student" at her school. She doesn't like school, though.
  
• She has learned how to administer her own meds, and is trying really hard to "help" put her feeding tube in. She's very helpful.
• She is still obsessed with dinosaurs, but her new obsession is Scooby Do, which we do not allow her to watch since she has now decided that there is a "Creeper" in her closet.
  
• She's decided that she wants to be a chef when she grows up. The irony of that is so huge that I can't stop laughing. A chef who doesn't eat. Awesome.
• She's also decided that it's my birthday. Every day for the last month. I'm now seven. As long as I don't have to repeat adolescence and my twenties, that's fine with me.
• She said to me yesterday, after I told her that she needed to go try to poop, "I'm very very sorry, sweetheart. We're all out of poo poo. Maybe tomorrow. I'm very very sorry."
  
• Her favorite book, that she carries with her everywhere, is Burt Wolf's Table.

Basically, she's awesome, or, as she likes to say AWSHUM!

This cake was made of cornmeal, sprinkles, sugar, and water. And, of course, a birthday candle. It did not taste good. Yes, she is almost always clad only in her underwear.

Just ONE of the Faces of the Health Care Crisis

For a limited time, I'm using her real name.

Some of you may know that my daughter, Virginia Grace, is losing her health insurance, most likely on Tuesday. We have been through so many hoops with TN Care, SSI, TN Cover Kids, and tried everything we know to do to help insure that she's insured.

A little background on Virginia Grace: she was born with a cranio-facial disorder called Pierre Robin sequence, and has been diagnosed since then with many many disorders that have required and will require more than a dozen surgeries, a tracheostomy, a gastronomy tube, through which she gets 100% of her nutrition (medical nutrition), speech therapy, occupational therapy, and so on. It was discovered last week that she also has a very very rare genetic mutation, one that we (and her geneticists) are just beginning to learn about. She will require surgery within the next few months to repair a fistula in her neck. She is one big pre-existing condition. (To read more of our story, click here.)

We are losing her health coverage because the state of Tennessee recently won a 20+ year court battle which allows them to push Medicaid-eligible people off of the TN Care rolls. Because we adopted Virginia Grace (instead of permanently leaving her in the foster care system, a situation which would have had the state paying at least double what they're paying now), she no longer receives an SSI check, though she is medically qualified as disabled. Because she does not receive an SSI check, Tennessee is no longer required to cover her.

We have appealed both the TN Care and the SSI, and are waiting for the appeals to go through. The TN Care appeal is on Tuesday, though the SSI determination may be months coming; the former is dependent upon the latter. Between the time that TN Care terminates her insurance (she was actually terminated on February 25, after only two weeks notice), and SSI does or does not deny her SSI, we are in a lurch. Because we elected to keep her coverage during the appeal process (with the caveat that we will have to pay back all of the many expenses accrued in the interim), we were denied by Cover Kids, the organization which is supposed to be the next step for her (with significantly decreased coverage and SIGNIFICANTLY increased out of pocket). Our private insurance would cost us almost $1000/month to add her. We simply cannot afford that.

Why am I telling you all this? I know that many of my friends come from disparate political positions, and I know that there are no easy answers to this problem, for anyone affected. But what I do believe is that this isn't just about "pushing through tort reform," and "allowing businesses to reward workers who have a healthy lifestyle," or "being able to purchase health insurance across state lines." I also believe that small businesses cannot bear the burden of the costs. I frankly don't know what the answer is. But what I'm asking, or hoping, is that people talk about it, think about it, and when people talk about it they think of Virginia Grace.

Please feel free to share our story . . . because we're not the only ones.

Click HERE to tell YOUR congressperson who you're inspired by.

Callicott's Rainbow by Wendy Sumner Winter - flashquake Nonfiction - Volume 9, Issue 3 - Spring 2010

Callicott's Rainbow by Wendy Sumner Winter - flashquake Nonfiction - Volume 9, Issue 3 - Spring 2010

I heard they were painting over Callicott's rainbow. Things happen that way, I suppose. Room must be made for fresh canvases. Cracking paint gives way to neon lights. Names are changed; and history is covered with fresh sod.

I never knew about this place before I knew you. Like you, it had been there all along, something I could have seen if I'd only opened my eyes, if only I'd traveled out of whitewashed East Memphis to gritty Midtown.

Now, its history has merged with my own. I've danced in front of this stage where Elvis swiveled his hips, decades before our births and tripped acid where my parents romped to the sounds of the Allman Brothers. Now, I hear, they're tearing down The Shell.

I had to drive by today — just in case I don't get to see it again. I wanted to concretize it in my memory, to encounter it empty and let my mind fill it as it willed. It makes me sad to think about it being gone, or even just modified, as if the changes might have some import, some impact on who we are. On what we mean.

As I slowed down and looked, my mind flashed back to the day we met. Here. Under the rainbow. I can see the sunlight oozing through your copper curls, the tips of your fingers as they hold a cigarette to your lips, and your eyes squinting behind the swirls of smoke billowing out of your nose — the breath of a bull.

I remember. We walked in the moonlight to the golf course, following the narrow dirt path that ran alongside backstage. I raised my peasant blouse to show you what was underneath, the skin of my breasts a white butterfly reaching toward the moon. I didn't know any other way to capture you, didn't know that you'd been mine since we were children running around the maypole at my parents' house, since the moment our hands touched, electrifying you into an awareness of girls. Of me in particular.

That night I danced in front of you and we kissed. It was both hot and cold, new and, somehow, not: like we'd been there before and always, and this was just a return.

We've returned, year after year, on that same day, Earth Day, to dance under this disappearing rainbow, to tell each other our story, our history. We've sat on the splintery benches, unmowed grass tickling our calves, listening to our own generation's contribution to history. Jim Dickinson passing the baton to his boys; FreeWorld bending the grooves of Santana. We've slapped our knees with the rhythms of drum circles, Sunday afternoons in the park.

My car idling behind me, I lean against the rickety chain-linked fence. To my right a fire pit is dug out under a low-branched tree, where hippies cook vegan burgers and sell granola from tattered backpacks. The grass grows thin around the spot, trampled for so long by so many black-bottomed feet. We've watched our friends become parents, creating tiny versions of themselves: tangled hair, patchouli-scented tie-dyes draping off their tiny shoulders and dragging in the dust or mud under the tree.

This place seems holy to me. And in this moment, quiet and still, it also seems somehow sad. And I feel pushed out of Eden. I wonder what will happen when our totem goes white, when the story wears thin from too much repetition? Does that happen?

I turn to leave, but stop, take my shoes off and feel the coolness of the ground. This ground will always be here. I and drive home now, where you've begun watering the grass, my flowers, fed the dogs and laid out the backgammon game on the front porch. You hand me my cocktail, kiss my neck, and I tell you the story of today.

Publication!

In the interest of increasing the length of my CV in the interest of getting a job in the interest of paying the interest on all thing in which I hold or owe an interest:

My short story (one sentence, you got time for that, right?), Liza The Smoker, is appearing at Monkeybicycle. It's a cool journal. Check it out.

Liza the Smoker
by
Wendy Sumner-Winter

Liza was one of those girls who smoked but who never took on the look of a real smoker—she held the cigarette between the knuckle and first finger joint and kissed the cigarette with wet and puckered lips and she never inhaled—and I never trust a smoker who doesn’t know how to smoke properly, which is to say that I never trusted Liza.

My Thesis Introduction

I’ve been thinking a lot about transitions, about how one thing follows another, about what comes next. And it seems to me that they’re never neat, never tidy, never what I expect them to be. Sometimes the fulcrum on which life pivots is long and slow, a gradual movement from one stage to another. But other times change is balanced on a moment, a tiny, sharp, jarring moment.

I started many of the essays in this thesis before I became a mother, something so unexpected, so utterly catastrophic, that it made everything before seem so small, so insignificant, so self-centered. I suppose that’s what parenthood does to most people. The problem is that my concerns have changed, and as such, so has my writing.

I kept thinking that I could retrace my steps through my work in order to make it make sense in the light of my current life. In some cases I think I’ve done that. In others, I’m not sure.

Because my life is messy and because my conception of myself is also messy, it stands to reason that a memoir of my life is going to be messy. In this collection, I’m wrestling with who I am and how I got here. There are some answers, and there are new questions. In the end, I hope, it’s a good story.

***This has since been totally revised!

35/10

by Sharon Olds

Brushing out our daughter’s brown
silken hair before the mirror
I see the grey gleaming on my head,
the silver-haired servant behind her. Why is it
just as we begin to go
they begin to arrive, the fold in my neck
clarifying as the fine bones of her
hips sharpen? As my skin shows
its dry pitting, she opens like a moist
precise flower on the tip of a cactus;
as my last chances to bear a child
are falling through my body, the duds among them,
her full purse of eggs, round and
firm as hard-boiled yolks, is about
to snap its clasp. I brush her tangled
fragrant hair at bedtime. It’s an old
story—the oldest we have on our planet—
the story of replacement.

Tree Climbin'

The other day, or rather evening, after I dropped my bookbag and computer on the den floor and rushed to VeeGee's room to join K in singing her goodnight, K ruined my night. He recounted his afternoon playing Super Dad and topped it off by showing me a lovely little picture he'd taken of VeeGee - in a tree.

"I was picking up leaves and messing around in the front yard and then, all of a sudden, I turn around, and she's climbed up in the tree! Here, look! Doesn't she look cute? See how proud she is?! She said, 'Hey, Daddy, look me!' and she was in the tree. I'm so proud; aren't you proud?"

Yeah. I'm proud.

See, I'm used to missing things these days. K and VeeGee play games and do art and inspect backflow prevention devices together two or three days a week. And VeeGee and Me? Well, sometimes she sits close to me while I work, with the background sounds of SpongeBob and Diego.

I'm almost finished with this danged thesis, and so, I tell myself, I'll soon have time to roll around on the floor with my little girl, to go to the park in the middle of the afternoon and learn how to hook rugs or something. But, I wonder, will I spend all this presumed "extra" time that way? I really don't know.

I watch K and VeeGee interact and I often wonder if he's got some kind of inside-track to/for her entertainment that I just don't have, or, maybe (and this is the kicker) want. I'm really good at making decisions about her medical care (and that's been a full-time job much of my mother-career), and I'm great at dressing her really cute on a very reasonable budget. I manage her poop cycle with relative success, and I make sure that her teacher never mentions anything that might suggest that VeeGee came "out of my tummy." I research every single hiccup and understand the rare permutations of every potential and real anomaly of her body.

I'm not whining. I'm just wondering. So many of my fellow mom-friends seem to be filled with such delight in their children. And, I do feel delight; I really do. It's just not what I thought it would be, I suppose.

Writers on the Road Series

Sponsored by Southern Illinois University Carbondale’s Graduate Writers
Forum and University of Memphis’ Creative Writing Club
Burke’s Bookstore, 936 S. Cooper St. (map)
Friday, Nov. 13, at 6 p.m.

Mark Jay Brewin Jr. is a second year graduate candidate at the MFA
program of Southern Illinois University-Carbondale. His poems
have been published in numerous journals including Corradi Summer
Journal and New Delta Review, and are forthcoming in Packingtown
Review, Iron Horse Literary Review and Southern Poetry Review.
They have also placed as finalist in the Guy Owen Poetry Prize and
the New Letters Literary Award Contest, as well as been featured on
Saxifrage Press’s website highlighting up and coming poets."


A.K. Thompson is a fiction writer who lives in a cabin on a pond in Makanda,
Illinois where vultures descend each fall. She holds a Master's Degree from the
now-defunct New College of California in San Francisco, where she nearly went
crazy, but arguably might have actually gone crazy, which may be why she is
now a writer. She has two smelly dogs, spends most of her time in the woods
stalking squirrels, sings hillbilly songs while picking her guitar and watches Hee-
Haw.

James Scoles’ most recent story— The Electricity of Crime—is featured in
the current issue of Prairie Fire Magazine (Canada). He recently returned from a writing fellowship at the National University of Ireland-Galway, where he worked on a novel based on his family history and a game of cards. His fiction and non-fiction have been nominated for National and Western Magazine Awards, as well as The Journey Prize (Canada), and twice for the Pushcart Prize.

Katie Zapoluch was born and raised in Pinconning, Michigan--not far from Madonna's birthplace. Unlike Madonna, Katie is quite fond of her hometown, and hopes to move back to Michigan once she's out of school. Katie studied English, Classical Studies, and American Studies at Kalamazoo College, and earned an MA in English Language and Literature at Central Michigan University. Her work has appeared in Kalamazoo College's literary magazine, The Cauldron, for which she served as poetry editor, as well as Central Michigan University's graduate literary
magazine, Temenos. She also won a sestina contest in Trellis magazine.

See Page 8

Shameless Self-Promotion

I'm going to be reading at Burke's Books with Mark Yakich on October 9th as one of nine voices reading Yakich's GREEN ZONE NEW ORLEANS, a poem for nine voices in unison.

Also, I'll be hosting him that afternoon at The University of Memphis for an interview and workshop as part of my Literary Heritage Class - Heroes and Monsters. C'mon out!