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.

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!

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.

Reading

Last night I gave a reading at Southern Illinois University. It was a strange event with lots of sleeping undergrads, and one in particular (who I got to sit next to while the other reader read) who was taking notes under the heading "Poetry Reading - 4/17" - though neither I nor the other reader read poetry - I imagine to write up a report for the professor who made him come because he's not doing all that well, but who didn't come his/herself - more on that later. It was really funny to read over his shoulder (I even took a clandestine photo while my friend was reading). "Ambulance drivers." "Old man in apartment" "Hot." "Bugs." "No dead body." "Fish." I can only imagine his list while I was reading: "Fuck." "Dentist." "Hurricane." "She said Fuck again." I'd love to be a fly on the wall when this kid's prof reads his report on "What I Saw At the Poetry Reading on 4/17." Tee hee.

I was rather disappointed, though, with the amount of support that the actual MFA program showed for us, who had driven several hundred miles (my trip was a "three hour tour" that turned into a five-hour odyssey, but that's another store altogether) to read on a Friday night - yeah it was Friday for us too! I mean, there were about five students from the program and, to my knowledge ZERO faculty or staff from the Crab Orchard Review (a great lit journal, with a really crappy web presence , if you can call that "a presence" at all).

We grouse a lot, in our program, about the lack of "school spirit" (for lack of a better term) that we can sometimes display. And I guess it's to be expected because, after all, it is graduate school, and we're, most or at least some of us, grown ups with lives outside of school. But, it seems to me that one of the things that one goes to school for, particularly graduate school, is to become a part of a culture, in my case, a literary culture. If we don't do that, then there is a bit of a short-change, it seems to me. I've learned more, truly, from being amongst writers, than I have from sitting in classes with them. We talk about writing, we talk about the books we're reading and why we're reading them, we encourage each other and hold each other accountable for production and excellence. So, all that said, I thought it was kind of sad that there weren't more people (especially that one faculty member who wasn't even aware that there was a reading going on at all!) that came out to support this shared endeavor.

Yada yada yada.

.

Blank Screen Blues

Yep, got em.


It just drives me crazy.



So, I'm not teaching this semester and it's kind of weird. I'm glad in one sense - especially since it looks like the fascists have taken over the FYComp curriculum! - but I really am going to miss it. I just didn't get my shit together in time to commit to teaching and by the time I decided I did, in fact, want to, it was too late. Not to mention the fact that I royally pissed off the very nice woman who coordinates the comp teachers. I feel bad about it.

But, on the other hand, I'm looking forward to a semester that's pretty open in terms of actual commitment. I mean, THE Commitment (aka thesis) is still there, looming over me and my "Blank Screen Blues" like a drooling, snotting, gargoyle (Oh yes, the thesis is a lovely thing!); but maybe I can tame him (oh yes, it's a HIM).

Not only that, but I'll get to spend lots more time with VeeGee. That's a good thing, of course, but you'd think we could just hang out and watch Sesame Street together and learn our ABCs. In fact, I spend most of the time that I spend with VeeGee in the car headed to this therapy or that therapy, swinging and swatting at her knees so that she won't fall asleep in the car, but will wait for a "real" nap because if she falls asleep in the car (as every desperate mother knows), the "real" nap never happens. That sucks.

And then there was more rain.

It has rained far too much this spring. I've got plants all over my yard in pots because the ground's been too wet to plant them. It's a pity. Something like this, well, nothing like this, but something to cause planting procrastination, namely the unexpected acquisition of a two year old redheaded child, happened last year, and so there are several lovely ferns that are pleading with me to give their roots some long awaited room to wiggle. Hopefully Saturday will be sunny enough to dry the ground a bit.

As is typical for me, I would rather do just about anything than the work that I'm supposed to be doing. I have several projects that I just cannot seem to bring to conclusion. Fellow procrastinators, what is it that causes this? I mean, it's not, actually, that I wait to the last minute. No, I don't wait to begin things at all. I just don't finish. I keep on working, or, at least, I keep on thinking, on the project: how can I make it better? what else do I need to include? have I covered all the bases? what the hell was the original assignment?

It's become so ridiculous that I've carried several Incompletes forward with me throughout graduate school. Please tell me someone else has done this and survived to actually get a job.

Oh, and that's the other thing. I am at that point in my career where it's time to start sending out the CV, figuring out what's next. And what do I find myself doing yesterday? Yep, looking in to PhD programs in ANOTHER discipline. Ugh - what's wrong with me?

So, rainy Thursday, I yield myself to the project at hand. I sign off with hope.