. I was mortally disappointed when, in my senior year of high school, I was NOT voted "Funniest." Seriously. I didn't care about those other meaningless titles. I mean, what the hell did we know about "Industriousness" at the age of 18.? Well, I guess there were some members who did know a bit about industriousness, since it turns out there are a whole lot of doctors and lawyers and engineers and scientists that came out of that class. But, STILL. I'll never forgive that nice girl Lisa, for taking the title from me.
When I asked my husband - boyfriend at the time - why he loved me, I was disappointed that he left out my sparkling sense of humor. I just couldn't believe that that wasn't the first thing that he found attractive about me - until I noticed that he couldn't stop staring at my chest. Ah well, a girl's gotta take what she can get, I suppose. But I really wanted him to appreciate me for being funny.
To that end, for the last fifteen or so years I have insisted that he reminds me of how deliciously hilarious he finds me as frequently as possible. Daily is best. And he's a good sport about it. Nevermind it's the last thing he says, and it's with a bit of a hint of sarcasm. Again, I'll take what I can get.
I realized recently that it's my best friend's fault. She really does think I'm the funniest person in the world. I can make her laugh like nobody's business, and (here's a secret) sometimes I'm not even meaning to! I'll take what I can get.
Here's my problem. I can't write funny. Nope. Not even this post is funny. And what the hell kind of funnylady writer am I if I can't do the two things I do best (well, two of the things that I do best) at the same time? I don't need or want to be ironic or witty like Sedaris and Vowell. I actually get tired of the tongue firmly planted in the cheekiness of the Eggers crowd - I'm funny, but I didn't say I was cool.
So, I set out to write a short story about a cooky old woman in a waiting room - my version of O'Connor's Redemption, which I find pretty funny in its macabre way (like most of O'Connor). In studying and reflecting on that story I was led to remember another story, Porter's Jilting of Granny Weatherall.
. She ran a fever all night, but as of a minute ago it was down (higher than her normal temp, but still down). Whew! She also seems more alert.
I had the strangest thing happen to me in the middle of the night. I had gone to bed feeling kind of queasy, but I'd only eaten one meal yesterday and it was something fried, which I don't normally eat, so I wasn't too worried. I don't know if I've mentioned here on this board that I have Crohn's Disease, so nausea is pretty much modus operandi.
Well, I got up to get her some water (she's wanting a lot of water!!!!! ) at, I think, around 2 and felt really really dizzy and queasy, cold sweaty, the whole nine yards. I started toward the bathroom and woke up, god knows how much later, on the floor. I have fainted before, but usually during a tachycardia episode. I've never just fallen on the floor and not remembered getting there. I must not have even put my arms out to catch myself because I have a nice knot on my forehead, and my knee is pretty banged up. When I woke up VeeGee was calling for me "Mommy, wake up!!" and I had no idea where I was or what had happened and just had that impulse to keep laying there until I realized the floor was cold and that the nurses might come in and see me there. So, it was embarrassment, really, that actually got me up.
I had one more almost-episode like that at around four, but just sat down instead of trying to make it to the bathroom.
I'm feeling pretty out of sorts this morning. So, I'm calling uncle and have asked dh to come and help me out. I hate doing it because it's SO his busy season, but I'm not a lot of good to VeeGee if I'm laying on the floor, huh?
. I've been reluctant to post since we got in here because it's been such a roller coaster and I kind of go from feeling whiny to giddy within hours. I really thought we were going home today, had my bags packed and everything. And then the doctor tells me it's going to be at the earliest Thursday before we'll go. I'm so sad, and at the same time kind of relieved. I had been worrying that she wasn't doing so great, but I am sometimes a glass half full kind of person (as much as I try not to be), and so I had pretty much decided that I was blowing things out of proportion.
As of tonight, I'm really glad we're here. She's developed a fever higher than she's ever run and she's been incredibly lethargic all day long. When she's been awake, she's mostly been laying down, and when she's sat up at all it's only been for a short time, like half an hour. I'm trying really hard not to start freaking out. I hear from so many moms whose kids have gone through these things. It's just part of the process. But it's really a challenge to balance my intellectual understanding of that process against the fever listlessness of my little girl. I hate seeing her this way. So cliche, I know.
In the midst of all this I have friends whose kids are going through things far more life threatening, or at least more definitely and imminently life threatening. And they're so generous with their support of VeeGee and me. Truly amazing.
Being in this room, which, fortunately is pretty opulent by hospital standards, is incredibly surreal. I mean, I've heard that it's hot outside, that rain is coming, and yet I haven't been out there. That's so very strange to me.
And these people, the nurses and other staff, come and go and have stuff going on outside of this place that's everything, my world, right now. I guess that seems rather trite to be thinking about, but all of these nurses, or most anyway, are these young cute vivacious girls, mostly, probably more than a decade younger than me. K and I were talking about how weird that is, that these girls are caring for our daughter are about the age we were when we first started dating. And god bless america, I wouldn't have trusted either one of us with a kid's life, like really her life!, for a million dollars. 'Course in our collective hubris (which was amusingly and embarrassingly HUGE) we probably would take umbrage at any suggestion that we were ill fitted to do anything.
And on that lovely reflective note . . . good night.
. We had a bit of a rough night. VeeGee's breathing is pretty labored, registering
apnea every few minutes, and there is some concern about the swelling (some is sort of beneficial - to hold the flap in place, too much, not so great). The upshot is that we're staying in ICU another day. :-( One of the things that I do love about her doctor is that he's pretty cautious.
I'm kind of concerned because the wonderful fight that we value so much is pretty much gone this morning. She's clearly feeling really really bad.
Her pain management seems to be pretty good. She's getting morphine every two hours and tylenol with codeine every six. Her blood pressure is running a little bit high, but I really think that's because having it taken pisses her off so much. And, of course!!!! Who wants that kind of "hug?"
I'll update if anything happens, but probably we'll just be watching monitors for a while.
One bright spot, we brought our own coffeemaker, so we'll at least get to feel sort of sane SOOON.
. She's out of surgery and Dr. Kelly believes it was a great success. We had some concerns when his intern didn't know anything about the combo p-flap/sphincteroplasty, and didn't get to talk to Dr. Kelly until afterward. But he did do the combination. So, basically, they've made a purse string in her throat along with taking some tissue from the very back and making what's kind of like a curtain. These two things should help her regulate air and improve speech.
Right now, she's pretty doggone angry, and fighting the IV and pulse-ox tape pretty hard. Each arm has two no-nos (kind of like splints to make her unable to move her arms) with socks on top of those because she's such a Houdini. She's already wiggled her way out of all of that twice, so we're taking turns keeping our hands on her to prevent her trying again.
Her mouth is pretty bloody and swollen, and there's a little bit of bleeding coming from her nose, but those were both to be expected.
We're in PCCU right now and will be here until, at least, 9am. We hope that we'll be able to get one of the family sleeping rooms (with shower and private bath) that they give out on a first come first serve basis (based, in part, on how far away you're from - so we're pretty likely to get one). That way we can take turns resting throughout the night.
Thanks so much to everyone who's sent love and prayers and good wishes. We really appreciate it!!!
Y'all, this is a big deal. Actually it's a BIG FREAKIN' DEAL!!!!!!!!
VeeGee let me paint her toenails today.
VeeGee has sensory processing disorder which makes her unable to tolerate much in the way of texture, especially "wet" textures. But, for some unknown (who cares!) reason, she finally said yes when I asked if she wanted me to paint her toenails. First she wanted green, and, well, I'm kind of a nail polish collector, so I dug out my green polish. She thought that was quite fun and so she asked for red. I'm kind of not into red polish (especially on an itty bitty like VeeGee), so I offered blue. She said YES!!
I tried to get her to let me paint her fingernails, but that was just too much. I got one hand done, and it wasn't all that fun because she kind of freaked when I got a teency bit of polish on her skin. So we stopped there. It's pretty faint, so I'm thinking she's forgotten about it.
Now, the toes are a different story. When I took her shoes off for her nap, she wiggled her toes and said "Pretty!"
In forty eight hours, VeeGee will likely be in the recovery room waking up from surgery. I had to take her to the doctor this morning because she's been hoarse the past two days and I was worried that there could be the beginnings of an infection that would knock her out of being able to have this surgery. And we've waited so long for this, agonizing about whether or not it is the right decision for her, agonizing about how the recovery is going to be different this time, since she's so much older and more mobile than she's been in previous surgeries. I'm dreading the time in the hospital primarily because I'm worried about how we'll keep her still enough to get better. She's so wonderfully active now.
The surgery, which is going to be a combination of two different surgeries, a pharyngeal flap and a velopharyngeal sphincteroplasty, is supposed to help her be able to have more productive speech by regulating the flow of air. I've read many accounts of how wonderful this surgery is and what incredible gains children have made after having it. And then I've heard the opposite. It's really hard to know how to choose these things. I mean, darnit, I'm not a doctor, Captain, I'm a writer!
Basically, our approach has been to hit at the problem from every angle available to us: oral motor, regular speech, occupational (feeding) therapy (which we also think has helped her speech), nutritional therapy (fish oil!!!!!), and surgery. I'm sure that at some point we'll have to start picking and choosing, or that we could get to a point of diminishing returns. But we're not there yet, and she's really thriving and her speech improvements pretty much stun everyone every time they see her (not just therapists), even from week to week.
I think that we special needs moms, like other moms, but more so, are kind of like general contractors. We have to kind of know what's going on in a global sense and then find people to execute different parts of the "project" as appropriate to each one's particular expertise. That's one of the problems (and advantages) with medical specialization (which is relatively new). Each doctor has his/her own little special interest, their own little (frequently very narrow) territory, largely to the exclusion of other possibilities. This puts us in a position of having to make decisions that sometimes pit specialists against each other. I just have to hope that it becomes an iron sharpening iron situation and that the one who can make the best, most accessible argument, is the right one.
Who knows what our path would have looked like if VeeGee had been living with us since birth. It's so hard to know those things, and it's almost too painful to think about them. There's a big part of me that looks at other children with the same disability profiles and feels sad. Could I have helped VeeGee be able to breast feed? Did she HAVE to have the trach and feeding tube? I really don't know. My gut actually tells me that both the cleft and the severity of the retracted jaw did, in fact, make those things necessary (though I think I would have certainly worked harder than her birthmom did to facilitate bfing because of the oral motor benefits that I'm sure, at the minimum, it provides).
I guess I say that to say that there are SO MANY ways to go about a treatment plan. And that, even if we make "wrong" decisions, like the ones that we had to pick up after, a kid can still thrive in the end. In most ways, you'd never know that VeeGee was/is as far behind as she was/is (until you lift her shirt and see that danged button). I know it's easy, and hard not to, agonize over every single decision. But I'm having to kind of give myself a break and let instincts do some of the work. Do I trust her surgeon? Yes. I trust him mostly because he's willing to sit down with me and treat me like an intelligent person. I don't know. Is that a good enough reason to go forward with this surgery? I hope it is. I trust it is. That's the best I can do.
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.
One of the interesting things that I noticed during Amazon's deranking period was that heterosexual erotica, for instance, a collection of Penthouse photographs, was not affected. If Amazon wants to use the excuse of "adult content," I'm thinking the word "Penthouse" would be front and center, right? But, no, objectification of women is okay, but literary works that appeal not just to but are written about and/or by homosexuality is not.
I'm not against Amazon, per se, and will continue to use them for their best technology, which is the "if you like this, you'll probably like this" and the aggregation of customer, critical and publisher reviews. They're a catalog, and I value that service, in fact, I'd probably be willing to pay for it in a subscription form. However, as best I can in my book-buying habits, I'm going independent. My Amazon account, in fact, was one of my last non-local vendors. Thanks, Amazon, for pushing me further toward my ideals!
This is a strange time of year. March 29th is K's mother's birthday. I had been thinking about it all week, but was afraid to mention it. He mourns pretty quietly. And it's a complicated set of feelings. In so many ways we were very glad to see her go, to see her finally released from the body that had been a cage to her for so many years. And yet, no matter how much she suffered, she loved life, celebrated life, and so it is hard to imagine her not living. It's what she did.
I think that the thing that means the most to him, perhaps, of anything anyone has ever said to him was the last thing she said to him. As we were leaving the city where she lived, six hours away from our home, as we were taking her granddaughter from her and from her daughter, she took K's hand, pulled him in close and spoke. "You're a good boy." What an amazing last thing to have your mother say. We knew that it was probably the last time we'd ever see her, and, indeed, she was gone within a few months.
Looking back on the last two years I think it's so interesting that Easter-time is the anniversary of when we brought VeeGee home and the anniversary of our last time with K's mom. Truly a death and rebirth. I think she would be very happy to see how VeeGee thrives. How happy she is. I know that there was a great amount of sorrow around the situation and, of course she'd have wanted VeeGee to stay there with them instead of coming here. But I hope that somehow, in those last few months of her life, she knew that VeeGee would be okay. I think she did.
I've been working on a short story for over a month and a half now. This is not like me. I mean, I usually work really quickly (and that was even before becoming a mom), but now I'm finding more enjoyment from taking my time.
Problem is, I really need to wrap it up, and I'm almost there. But the ending is killing me. In so many ways I feel like I'm supposed to have SOME BIG MEANING at the end here. And I do, actually. But I'm concerned about making it too, well, "Meaningful."
So, I've been sitting on it for about a week. Contemplating. Worrying. Fretting.
I think I'll just do it. Let the cards fall where they may.
I'm VeeGee's Mommy, K's wife, an academic, a writer, a teacher, a gardener, a chef, blah blah blah. I write about my journey as an adoptive mom of a kiddo with Pierre Robin Sequence, and other stuff like politics, race, religion - you know, that stuff we're not supposed to talk about!