Wednesday, May 26, 2010

Baking Bread and Licking Envelopes

I'll make this one quick. We baked bread again today. This time it was black/blue/raspberry bread and I threw in some oatmeal for, well, I don't really know why. It's probably my mother's voice, "Eat white bread, the sooner you're dead" mantra echoing in my ear. Diet Coke for a pre-teen? Sure. Just no white bread.

Anyway, that's another post for another day.

VeeGee and I baked bread today and before we mixed all the berries in, I told her that she needed to try one ittttty bittttty (we're talking minuscule, people) piece of raspberry. Well, you'd have thought I was asking her to cut her arm off. Or eat poop, or something. We went round and round for about five minutes and she finally -- sort of -- "ate" the mashed up little piece that had, by that point, melted on my finger into a rather macabre-looking lump of fruit.

So, we move on. Bake the bread. Burn the arm (mine) with the closing of the door on the arm bit (I'm in agony). It's delicious, if a bit dry and not too sweet.

Fast forward. We didn't get to go to her playdate with her "BEST FWEND IN DE WHOLE WIDE WOYALD," because I feel icky, so she decided to color her friend a lovely T-Rex. And then she decided that the picture should be put in an envelope, and sealed with sticky tape (I think that's what Dora calls Scotch tape). I explained to her that, no, all you have to do is lick the envelope (you know, like George's Susan) to seal it. So she did. Vigorously. With no shuddering. Over and over. To such an extent that there is no way that the lovely flavor of adhesive escaped her sensitive little palate. But does she object to that, likely toxic, taste? No. No, she doesn't.

But lick a raspberry? No way.

Monday, May 24, 2010


This essay appears in the Spring issue of Switchback. (You should check them out HERE!)

Wendy Sumner-Winter

I stood in the Goodwill parking lot on the Highland Strip, across the street from the college bars. Music billowed out with the cigarette smoke as kids my age pushed and pulled their way into and out of the darkness. I smoothed the pale blue dress across my torso, imagining the cells blooming inside of me. The dress was an extra extra large tent-like thing, taken from the left-behind-pile at the dry cleaner where I worked. I arched my back and stretched the fabric across the convex curve of my belly.

I don’t know why I was standing there. Perhaps I was stalking, waiting to be stumbled upon. Waiting for one of the boys to come and claim me, to take responsibility. I was standing there, and it seems to me that it was cool, late spring.

But my chronology about this whole time in my life is fucked up. When I look back, I don’t know what happened first, what thing led to or came from the other. I’d waited a long time to become a woman, to know men. And then off to the races. I’d run out of the starting gate like that mechanical rabbit would feed me if only I could catch it.

And then I was in the emergency room. In the waiting area of the grimy public hospital, the hospital for the indigent and shattered. My father’s friend, an older man, a Christian, having pity on me in my state, sat beside me. I don’t remember the labor beginning, or how it was that I came to be in this place with my father’s friend. He prayed for me, but I kept my eyes open, could not bow my head, could not say amen. So be it.

I could not lower myself fully onto the chair. I could not let my legs stick to the ripped black vinyl upholstery. I did not want to let the blood go, fearing what it would take with it.

The nurses nodded toward the chairs every time I went to ask how long? as if they’d seen a million girls pushing a million dead babies into the world, into this dark room. I was afraid to push them, afraid of being shuffled to the bottom of the pile of files. So, I waited my turn.

When my turn came, I’d already finished.

They spread the white paper across the brown vinyl table. I tried to stay on the paper, away from the blood that was on the floor, on the garbage can, on the step I took to crawl up. They spread my legs and nodded, reaching inside of me, confirming what I already knew. I was empty.

I lay there with tears dripping, as quietly as I could; afraid to ask for reprieve from my sins, afraid to ask for relief from my consequences.

The room was filled with people. People in addition to the nurses and doctors. A party bopped around like this was something easy, something not deserving of solemnity, reverence. All watching my sister push her second child into the world. At twenty-two, she had two. At twenty-nine, I had none.

This baby was born blue.

I sat at the foot of the gurney and wondered why no one else seemed to notice that the baby was dead. The nurses scurried around, each with a task that made them not see her. The party filmed and laughed, patted each other on the back as if they’d done something. As if, by their universal virility, they had done something here with my sister.

The blue baby had black, black hair and lots of it. Her face was screwed up in a scowl as if a scream were trying to escape from the black gulf of her throat. The room was cold. I looked at my fingertips. They were blue as well.

My sister’s red face popped up from her pillow as she pulled her knees toward her chest. She grunted and howled, her hair a wet halo against the starched white pillow. I could not move, but waited for her eyes to open and see the blue baby slithering into the world. She did not look.

They held a mirror between her legs and she looked. She reached down to touch the head which had paused in the entryway, the exit. Wow, wow, wow. She said it over and over, an ohm, a birthing chant.

The baby finally screamed, and took a deep breath. The baby punched at the air as she lay on her mother’s stomach.

I stood as the nurse carried the baby’s pinking and squalling body to the scale. I reached for her, and touched the tip of the swaddled form as they lay her in the crook of my sister’s arm – out of my arms’ reach.

They lopped off the ends of my fallopian tubes, over and over until there was no point in keeping the scraps anymore. The ovaries were pocked with cysts and covered in webs of scars. Blood ran for years without pause. Two more babies exited dead.

I gave up, resigned, and had them take it all away.

In the ward they wrapped my legs with pressure cuffs and gave me the morphine button. I pushed on a timer – every ten minutes. I willed myself to be relieved, to feel emancipated, to no avail. They said to walk, walk it off, like what you tell a kid on the playground who’s been punched in the stomach. I walked and wept and watched my lover try to reach me, to keep up with the sorrow, to sweep it away.

Consolation cards came with casseroles and insufficient comfort. I was in a place unreachable by platitudes and promises of better days. The good aunt, the cheerful sitter, the unperturbed marriage – such prognostications are the luxury of the full.

The priest said to my friends, Father, name your child. I wept onto my lap, holding the keen in my throat, keeping my silence. We bowed our heads as the parents passed, down the aisle, the font behind them. And then we stopped going at all, too many overflowing cradles, too much predestination.

Time does not heal the want.

When I first heard that she’d come into the world, she was already six weeks old. Already sliced and diced, already neglected. She was sick, they told us. She was broken, they said. They offered her to us as if they had the right to broker her. It was all hypothetical, all horror.

We stood in our kitchen, on opposite sides of the silver table, four hundred miles away from her, looking at each other. I with longing, he with reserve. I wanted a baby. He didn’t. Neither want nor lack of want mattered. She belonged to someone else.

I saw her first at nine months, crawling on the filthy floor, dragging her feeding tube behind her. Dragging it through the dog hair, against the flea filled carpet. I saw the green mucous crusting her unfiltered trach. I saw her mouth stretch wide in a silent howl. I saw her red hair, thin and patchy like a chemo patient’s, her skinny legs, her distended tummy. And I saw her mother’s dispassion, disconnection. It was everything I could do to not reach out, grab her, and run.

When we got in the car, I told him that this, this baby, was my baby.

Another year, another phone call, standing in the same place, the silver table reflecting our faces. He looks at me and mouths, it’s the baby. I see the switch in him, instant, firm. He is a father now. I know, that moment, like I knew from the very first moment. My baby is coming home.

We have five weeks between the phone call and the arrival. A short gestation. We walk around in a daze, pregnant with fear and sorrow and joy, not sure where to go first, what to do. We read about the causes, the missteps, the brokenness, the system. We learn new words, forget old dreams. Adjust to the coming.

People are happy for us. They throw thoughtful showers for us, and thoughtless phrases at us. Jewels in your crowns. She’s lucky to have you. Things happen for a reason. Meant to be. Meant to be? People tell me that; I sometimes think it. But that would mean her suffering was meant to be, engineered. That can’t be, isn’t, true. My suffering, the availability of my home and heart to her, not meant to be. I don’t buy it.

I think about the first mother, my husband’s sister, young and numb, like I was once. I gin up compassion like a white lie. I look so hard at the facts that have been laid out before me in the documents. Highlighted in yellow. Arrived at school with wet feet in forty-degree weather . . . child found lying in a pool of vomit, choking, alarms ringing, door closed . . . social worker called to spend the night in ICU because mother’s first day of school is tomorrow. How does one forgive?

I lie awake most nights, watching her breathe, waiting for her to stop. And when I sleep, I labor. Pain beats at my insides from my mind? from my own sense of loss? the scars of my un-birthed babies crying for their new sister? And when I wake again, my breasts tingle from the phantom suckling, ache for the baby to be nourished from my body. I examine my sheets for the blood, the placenta, the water. The sheets are immaculate.

I want to hear the word mama, but she is silent, eyes averted, tentative. It’s too soon, but I am impatient. We trip over the event horizon and into a black hole, a tiny spot of receding space. Sorrow and anger are sublimated by the need to move, move, move. We are making up for lost time. We are trying to restore what she never had in the first place. We try to replace what should have always been hers, but never was.

I check her feeding tube; fill the bag with putrid-smelling formula. I hold her tight to my breast as she vomits up every bit of life that I can imagine she holds inside of her. I wrestle against her swatting hands, touching her where she cannot bear to be touched. I hold her down, slide the trach out of its puckered hole. Her mouth stretches open, gasping for air, the instinct that has no satisfaction. Her eyes widen as I slide the fresh one in. I give her back her breath.

Thursday, May 20, 2010

A Moment of Pleasure, A Milestone for Me

VeeGee and I have a lot of fun, but mostly it's when we talk in the car (on the way to the doc/therapy/surgery/etc.) or in my half-attention while I'm working. K is the roll on the floor guy. I feel like so much of my life with her is planning and researching stuff for her health care (financial and diagnosis-wise), not quite as much is just play.

Some of that is just me. I have a hard time letting go of all the hooha and just sitting down to play. Some is her. She would really rather watch tv than anything in the world most of the time, and so trying to get her to play is awful.

Anyway, yesterday we baked bread together. It was really so lovely. She's getting where she's interested in and willing to follow directions (still won't eat the final product, but that's okay). I know that seems so small, and so many of you are much better at this part of mothering than I am. But, for me, it was just wonderful to feel pleasure in doing it instead of obligation. Does that make sense? It makes me really excited for the summer! She's doing Extended School Year, but that's only until noon, so we'll have more time to play. And I'm actually looking forward to it. Which is a milestone for me!!!!!

Thursday, May 13, 2010

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.


  • 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.