Showing posts with label VeeGee. Show all posts
Showing posts with label VeeGee. Show all posts

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

Immaculate

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


Immaculate
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!!!!!

Monday, September 14, 2009

It's Come to This

I really have been writing. Just not here. I'm going to finish this G-D thesis THIS G-D semester if it kills me. And, in between my memoiry angst, I'm writing some stuff for Memphis Parent Magazine. So, in lieu of an actual post today, I thought (inspired by Elizabeth Alley) that I'd make a list of the things that I would have written about had I been writing here.

1. VeeGee started school in August. Her pre-k teacher is awesome (and strict!). I can't believe she's there every day. Crrrazy.
2. I've, as of today, lost 40 pounds (since April). And yet, I don't look very different when I look in the mirror.
3. I went to my second bachelorette party with the same group of girls at the first, about ten years ago. It was fun, but the strippers were icky. I heard tell they put on "crotch cologne."
4. VeeGee has spent the night out twice, once at the great grandparents, and once at the grandparents. She didn't miss us at all.
5. She is still not eating, but she's talking up a storm.
6. We're going through, perhaps, the very worst financial crisis of our marriage. And yet, we're relatively happy. I don't know whether it's denial or just a deep-seated reliance on each other. Probably both.
7. I am feeling really really sad and worried and afraid that I'll never land a job.
8. I'm afraid that our financial situation is going to force us to stay here when we should be moving on.
9. I am both sad and happy to hear that VeeGee is most likely not going to be allowed to stay in the special needs program.
and, 10. I've seen a hummingbird almost every day that I've sat at my desk writing. They're extraordinary. In the future, I will call this the Summer of Hummingbirds.

Wednesday, June 24, 2009

The Birthday Party

When we were blindsided on Mothers' Day by the fact that VeeGee's birthmom was coming for the weekend of VeeGee's birthday, we had not really made any plans for the day or the weekend. And it took us a few days of agonizing (up all night) discussions to figure out what exactly to do. My beef is that 1) she did not call us at all (still hasn't) to discuss whether or not this was a good time, whether we were planning to even be in town - instead letting her grandparents know her plans, 2) we had not really planned to do much - maybe go swimming or something at my dads, or go out to a small lake for VeeGee's first ride in the canoe (I got a great deal on a VeeGee-sized lifejacket at Sam's!). We frankly don't have the money to have a party right now. But, 3) and really, most importantly, I don't want bmom to assume a claim on that day forever (or on Christmas - as she also clearly feels entitled to). VeeGee is my daughter. I'm NOT a permanent babysitter (as it seems these people believe me to be - even with all their shallow flattery of the "great job" I'm doing with VeeGee).

I understand that there is, definitely, and unseverable relationship between VeeGee and her bmom, one that did start on VeeGee's birthday. And I will do everything I can to make sure that VeeGee both understands and honors that relationship. At the same time, we are a new family, VeeGee, K and me. Just us. How we spend our time with each other and on our holidays shouldn't have to be frought with (suprise!) contingencies outside of our family life. It feels really unfair (to my basest self) and inconsiderate (less base) and unmanageable for bmom et al to assume a claim on VeeGee's (ergo my/K's) time.

I also understand that VeeGee and K's (and bmom's) blood family is the type that kind of flies by the seat of their pants in terms of making time commitments. For example, if I say, "We're planning a dinner party on August 8th, would you like to come?" The universal family response would be, "We'll see." They don't understand the need for pre-planning, for concrete obligations, none of that. It makes me utterly crazy. And the upshot is that we may, forever, be dealing with their whims about just showing up (or not). I truly believe that they don't get (or are dismissive of) my need to know what the heck's going on. I mean, I really do have concrete plans all the way through October. No joke (and I might not even be remembering them all). Now, that may make me kind of weird, but, guess what ?! - it's MY family and it's how WE operate. I've learned to leave some open space for K, because he does come from that place of no committments, but that open space is almost always reserved for just us.

So, anyway. After several days of agonizing over what we should do (and still not having heard from bmom!), we decided to throw a party. It'll be a stretch financially, but I decided that I needed as many people around me for that day as possible. People who know/understand/support my relationship with VeeGee. I know that may seem selfish, but, well, there ya go. I mean, these are people with children and VeeGee will be BESIDE HERSELF to get to be with all of her friends at the same time. I'm looking forward to seeing how she reacts to this plentitude of friends (whom she begs for every day!).

I've told many of the guests that bmom will be there, in part to explain in advance any strangeness in my behavior, and also so that they won't be shocked to see this person that many of them perceive as a villain. I know (or I guess) that it's my fault that she would be perceived as such, but it's really hard to give anyone the full picture of this person who neglected VeeGee to the point that the state had to step in, particularly when they're MY friends who've stood beside ME during this adventure. They don't know her full life story like I do - and even I (as you know, dear reader) have a hard time forgiving her.

I sent out invitations (over a month in advance) and sent bmom one as well for the party, which we decided to hold the day before her birthday. I needed it to be at my initiation - not hers. She's (!) coming. And I think her father (K's step-father) is as well.

And on the day of her birthday, we're going to just be the three of us, with, perhaps, the addition of my little brother (aka The King of Birthday Celebrations!). At any rate, whatever we do, it will be our idea.

Tuesday, May 12, 2009

Mother's Day

For a few weeks I tried to decide whether or not to send VeeGee's birthmother a Mother's Day card. It could go either way, right, in terms of hurt feelings or insensitivity? And I don't want to gratuitously hurt her feelings. In the end I didn't send anything. It wasn't so much a choice, but really a case of life getting too busy. That, and, well, Hallmark doesn't make a card that says, "Thanks for the baby - still picking up those pieces - Happy Mother's Day!"

I don't know if the events of Mother's Day make me glad or not relative to that decision. The bad me is glad.

When the grandparents arrived an hour late for the Mothers' Day brunch I'd prepared in g-mother and my mother's honor, they announced to K (I was in the kitchen RE-heating brunch), that bmom had called to wish Happy Day, and to inform them that she plans to come to town for the weekend of VeeGee's birthday. News to us. In fact, we haven't heard from bmom (other than an Easter card for VeeGee) in quite some time (and only then an e-mail to me sending Easter pictures).

I'm having a really hard time with this. It feels like this is a forever situation, in that we will always be looking over our shoulder for bmom to -poof- appear at holiday time - as if we're just supposed to drop everything in order to include her. It's not that we want to prevent VeeGee from seeing and having a relationship with her bmom, it's just that we can't always be in this kind of limbo. Are we supposed to assume that she assumes that grandparents will give us the message and that that should be assumed to be enough "notice?" The other thing that bothers me about this is that, by letting (if we actually do allow it) her just show up on whim to see VeeGee, we're signalling that it's okay to behave this way not just to us, but, more importantly, to VeeGee.

We've thought of a number options. One is to have a big birthday party - so big that bmom's presence won't have to be THE focus of everything. It wouldn't be out of character to do this (there were, no exaggeration, 120 people at her party last year). But, finances being what they are, I don't know if that's the smartest option. Another thing we considered is going camping. But it may be too warm by that time (late June), and I don't like the idea of pinning all our hopes on a dry weekend. And then there's the option to just ignore this all. Go about the weekend as we normally would (whatever that might mean) and not count on her showing up (it's happened!). If she does pop into town, particularly if she still hasn't called us directly, we'll just do what we had to do at Christmas and be very narrow in our availability.

Now, if you haven't read here before and are thinking at this point that I'm a bitch, please read some old posts. This isn't a simple case of regular old adoption, not that it's ever simple, and we're kind of making this up as we go along. My hope always is to be a good, non-angry/resentful, mom to VeeGee. And part of that is being generous and kind to her birthmother. I don't forget that. But I'm also not willing to sacrifice our hard earned family to the whims of someone who ceded all of her rights through neglect and passivity.

Tuesday, March 24, 2009

Give Blood!

So, it's been a while! VeeGee is scheduled to have surgery (pharyngeal flap/velopharyngeal sphincteroplasty) on April 22nd to correct airflow during speech. Her surgeon (the amazing Dr. Kevin Kelly) has ordered type-specific blood. VeeGee's blood type is O-negative. K, fortunately, can give because that's his type, but I can't. :( If you are interested in helping us out with a donation, please let me know.

Tuesday, February 24, 2009

Why Not Sign?

I just had this conversation with VeeGee's ST (speech therapist) yesterday about whether or not we should be focusing more on signing with VeeGee to help her communicate. VeeGee has been taking fish oil for about three months and her language ability (caveat in a moment) has increased dramatically. What I mean by ability, though, is that she is stringing longer and longer sentences together and clearly producing much more abstract thoughts/statements. Problem is, her apraxia itself has not improved enough to make her speech any more intelligible. In fact, because her sentences have gotten so much longer and now include non-concrete things that aren't in the immediate vicinity, she is actually harder to understand. Pair this with her increased desire to communicate, and you can imagine the mounting frustration.

Anyway, I asked her ST about whether or not ASL would help VeeGee and she said that it wouldn't necessarily be the best use of time/resources for her because she would have such a learning curve to catch up with the words she's already "using" that it might actually slow her down. Also, she said that it's important for VeeGee to keep trying to verbally communicate, since not everyone is going to understand her with ASL anyway, and so her frustration at not being able to say/be understood wouldn't necessarily go away. Finally, she suggested (a while back, and we have ordered) a augmentative communication device which, she thinks, is going to do more to help her with the motor planning aspect of her apraxia (because of the time/planning it takes to find the correct button) PLUS it will give her a "voice," which she can then mimic.

Now, if VeeGee had had a better foundation pre-verbal with ASL the story may be different, but that's not the case. When she came to us she was using a very limited amount of sign but immediately abandoned it whenever a verbal approximation achieved the communication that she was attempting. I think it has to do with the impulse that children with apraxia have. It's my understanding that, generally, the desire is pretty high to be able to communicate verbally and the outlet that ASL provides is still just a band-aid - a good band-aid in many cases, yes, but not always, because it doesn't actually treat the problem but rather is simply a coping mechanism and/or stop-gap.

Sunday, December 28, 2008

Kinship Adoption

In many ways I think that kinship adoption is much more challenging than typical adoption - for everyone concerned. One of the big things is that we weren't looking to be parents, at least not of this child. I wouldn't trade her for anything in the world, but the lack of intention really has completely shaped the way we've grown into being parents, a family. I joke that we had a three week gestation period, but, really that's pretty much what happened.

I am frequently told that I "saved" my child; and it is suggested that K and I are some kind of heroes. I am most definitely not a "hero" or a "savior," and, while I am so glad that I have VeeGee and she me, I would much rather have had her have a happy and safe home-life with her birthmother. I refuse to buy in to any "meant to be" stuff because that means that VeeGee's suffering was "meant to be." In my heart, somehow, there was a place that VeeGee definitely moved - way before she became my daughter or was taken from her mother - and I can't explain that except to say that, maybe, the mom in me was already clued in to what was happening to her and was preparing me to be ready. I did know, somehow, that she would end up with us. But that did not make me happy because it was a result of suffering.

As to her birthmother: I have known this young woman since she was six years old, loved her as a sister. She is, and always has been, a very sweet person. She's had a VERY fucked up life. She was WAY too young to be a mother to any child, and VeeGee's severe and multiple disabilities made it even more difficult. Her and K's mother, who died last October, had very very involved multiple sclerosis and was completely bedridden and needed as much involved care as VeeGee did. Her father, who hasn't worked since she was born, has the worst raging temper of anyone I've seen. They lived in the grossest squalor I've ever personally witnessed.

Birthmom's biggest "crime" was that she refused to accept help when it was offered to her, she let her pride get in the way. It was very costly, almost to the point of VeeGee's death. I call it abuse because that is what DCS called it, because that is how I "read" allowing your child to suffer the way that VeeGee suffered, though I understand that many would call this neglect - I guess, for me, for now, "abuse" is a semantic coping tool. I also call it abuse because I know, from witnessing it firsthand, that Bmom's father was very rough with VeeGee (and his wife) when attending to her needs, and that she allowed that to happen and continue. Still, in my calmest moments, I know that Bmom really does love her and just was, herself, disabled.

I got an e-mail this morning from Bmom thanking me for allowing the visit last week. She apologized for the short notice and promised to be more consistent with her contact. She also sent me, per our request, a picture of VeeGee's bdad. Zoiks! He could be K's brother, which explains why VeeGee looks more like K (her half-uncle) than Bmom.

In the end I know beyond everything else that I need to work on being as peaceful and generous as I can within the bounds of keeping VeeGee safe. Anger does not a good mother make. I'm hopeful that we can grow into a peaceful relationship. I am not going to co-parent with Bmom, but I do want VeeGee to have as many people around her that love her as she can.

Sunday, December 21, 2008

Surprise!

We just got a call a little while ago that VeeGee's bmom is going to arrive from across the state this evening and is staying until, well, we don't even know, could be New Years. This is the first we've heard of it (they weren't even the ones who called to let us know) and we already have a houseful of children that we're watching for my sister (OVERLOAD CITY!!!!!!!!).

We also found out that they ("they" are bmom and her father) have been lying and telling K's grandparents that we don't return their calls and never call them. Holy SH*T!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! We have received exactly three phone calls from bmom since bringing VeeGee home. That would be three phone calls in almost two years. And we've sent e-mails, birthday videos from VeeGee, and have called many many times (they don't answer their phones because they dodge bill collectors constantly and/or have them disconnected).

K. I are so angry we could spit.

(P.S. It's really and truly not that we want to keep these people away from VeeGee- it just needs to be on OUR terms which are based on care and concern for VeeGee (things which clearly they do not have).

One of the things that is so amazing and painful about this is that K's grandparents (also birthmom's grandparents, my de facto mother and father -in-laws) consistently seem to choose sides on this, and the side that they choose is bmom's: the one who WILLFULLY abused and neglected VeeGee (the child they absolutely adore), almost to the point of her death. Basically, they are calling us liars when we tell them about the lack of contact.

We always invite K's grandparents for Christmas Eve (they have never ever come because it's mostly the evening that we spend with my dad and his dad, who is their ex-son-in-law - they HATE both my dad and K's dad) and I think they expect to be invited also. For me, that night is the most important and meaningful part of the entire season and is pretty sacrosanct. I'm just not ready to bring them into the mix.

Generally we don't even see his grandparents on Christmas - sometimes the day after, but usually we wait til New Year's Day because that is K's grandfather's birthday.

The way they are, I'm pretty sure that they just expect us to drop everything and go to the grandparents tomorrow and the next day. I'm so up to my eyeballs with VeeGee and my sister's three kids (one of which is a one-year-old), I just need to stay in one place. Not to mention the fact that I'm hosting dinner on Christmas Eve and have to get the house ready (in the midst of all these kids!) for the company that I was already expecting. I've already bought food, too, so that would be another thing . . . . . UGH.

Saturday, November 8, 2008

Social Rejection

In some ways it was easier when VeeGee had her trach, because there was a clear outward "signal" that something was different. Now, without it and because of the jaw distraction, only her size signals something different (until someone speaks to her, of course). What we were noticing tonight is how she just doesn't try to communicate with her peers verbally. Her only words are "uh huh" AND "uh uh."

So someone asked, “Can you find some other families with special needs children for your child to make friends with?” Well, you know, that can be problematic for several reasons. One of the main issues, for us, is that we want her to be able to mimic the speech of typical kids as opposed to other kids who, like her, have a difficult time speaking. Also, well, I'd like her to be able to live in the "real world" and not a little enclave of SN people. Besides, the spectrum of special needs is as broad as the spectrum of typical people - so it's not like you can "go shopping" for someone who is just like your kid.

I know that wasn't mean to be offensive, but, I have to say, it kind of was.

For the record, VeeGee has always been in a school with 50-50 kids with SN and "typical" kids. I am most certainly NOT living in any sort of fantasy world about that (well, beyond the occasional, "Wow, this is our reality" kind of thing that, I'm guessing, is something at least SOME of us feel at times).

One thing that I think informs my feelings on this subject is the fact that I have a 16 year old brother who has Down Syndrome and I have seen him in both sorts of situations: inclusive and not. He spent his first thirteen years in schools that were completely special needs oriented - though my parents worked very hard to have him involved in extra-curricular activities where he could also be around "typical" kids. Now he is in a school that is primarily a typical school, and he has a few peers who have special needs.

What I have seen, firsthand, is the way that he has really thrived in both environments, though, now, as he grows older, it is entirely appropriate for his world to begin to expand to include all types of people because - fact of the matter: he will have to live in the "real world" at some point (hopefully!).

As to the quality of relationships that he experiences, and the concern about their potential superficiality, I think, truly, that he experiences most relationships just as they are. He most definitely has real reciprocal relationships with typical kids. They are no more "superficial" than the relationships most people have with each other. Obviously, they are different than the relationship two typical teenaged boys would have with each other, but I don't think they are qualitatively less mutual or rewarding.

I am not looking for my daughter's friends to be her therapists. I am, like any mother, hoping that she will be able to learn good things from her friends. All mothers, I think, try to facilitate relationships for their children which they think can benefit them. Why is it wrong for me to want my dd to be around children who are modeling a strength/skill which she lacks? That doesn't put any onus or burden on her friends to be anything other than exactly who they are. F what it's worth, VeeGee's two "best friends" (insofar as kids her age have "best friends") are typical girls who, somehow, understand her attempts at language. They play and "talk" to each other.

I don't disagree that it is/will be important for her to be around and have the support of other children with disabilities. She gets plenty of that even now through her daily therapies (several of which involve group play) and through playdates and whatnot. I'm not trying to pretend that she's not disabled - that would be virtually impossible - I just want her to have access to as many types of friends as she can have - black, white, special needs, disabled, typical.

We were at a party the other day with some of VeeGee's typical friends. I'm noticing the deepening chasm between her ability to communicate and theirs. It's making her more and more awkward. One on one she does really well with typical kids, but in this particular situation (which was uncommonly frenetic - a birthday party in a very small house, with no outside access) she just defaulted to "playing monster/tiger" and chasing the kiddos around. It was cute at first, but then dh and I both realized that it was continuing because VeeGee just didn't have any other way to interact with the other girls there. Cognitively, she functions on their level, which is what makes this harder, I think. So, we're wondering, "does she know that they're ahead of her verbally? How might that make her feel?"

Friday, October 31, 2008

Why I Don't Use Time Outs

I don't use them for a few reasons.

First off, my daughter is an only child - always will be, so I don't see the point of sending her off to be by herself (especially characterizing that as a punishment or consequence or however we want to call it). She's by herself too much already, I'm afraid.

Also, I think it kind of works in the reverse. Her "bad" behavior is usually in response to a request or instruction from me. I don't want to give her an "out" of whatever it is that we need to be doing at the moment. As in real life - we just, sometimes, have to power through.

And that leads to the next reason: time-outs aren't "natural consequences." I know some people think that yelling at a friend will end up making that friend go away and so the separation of time-out mimics that consequence - I don't think my dd could make that connection, and I don't think that's really how it works in real life. What happens, I think, is that things escalate because people don't know how to harness their emotions or control their impulses or whatever. That's what I want to help my daughter learn to do, so, staying inside of the situation gives me a better teaching opportunity. Sure, it can be hard on my ears/emotions/headache/whatever, but I do think that it's a much more productive way of parenting.

All that said, I do ask my daughter sometimes if she needs some rest when she's behaving in a way that's not appropriate (and I reluctantly use that word, because I think "bad" behavior is appropriate as children learn to navigate the world - I don't think we should encourage it, of course, but I do think it's developmentally appropriate). Sometimes she does need a few minutes alone, talking to her animals (her toys).

Saturday, October 25, 2008

Feeding The No!

It just feels like I've hit a wall and the "force" (hyperbolically) is what I feel is next. The thing is, VeeGee has kind of hit this wall before in her other therapeutic areas (speech, other OT issues, and PT). At a certain point, we had to start limiting her choices and eliminating the option for refusal - not because she couldn't do something, but because she figured out that we'd let it slide if she chose the NO option. Believe me, I'm a sucker for this kiddo, particularly because of her past beyond her medical issues, and I don't force anything - have actually fired therapists who did try that.

Regarding the shudder - that is a response that she has to a lot of sensory stimuli. If she gets something sticky on her hand, she'll shudder. It's kind of a "Oh God, get this off of me!!!" kind of response. I wasn't at all surprised to see it with the food. We are working on desensitization through brushing and input of different textures.

So, here's the good news! After only four of these "meals" - three bites each - she opened her mouth all the way without any extended point-counterpoint. And swallowed!!!! Yep, I said it, swallowed (that is something I cannot force, no matter what!!!!) So, two meals running @ 4 bites each, she's done that. And then off to Dora . . . .

I think this issue, for me, is about listening and watching VeeGee to determine for her, when she can't for herself, when it's time to move to the next step. I have to do this in every area of her life. I'm pretty excited about this decision because it is such a huge thing for her. She hates hates hates hates the tube - wails and cries when it's time for it. I don't think that a bit of coercion in the direction away from it can be a bad thing.

It's tough knowing the best thing, isn't it? And, who knows, this might not last. I just felt like I'd be doing her a disservice to not try. It just feels like I've hit a wall and the "force" (hyperbolically) is what I feel is next. The thing is, she has kind of hit this wall before in her other therapeutic areas (speech, other OT issues, and PT). At a certain point, we had to start limiting her choices and eliminating the option for refusal - not because she couldn't do something, but because she figured out that we'd let it slide if she chose the NO option. Believe me, I'm a sucker for this kiddo, particularly because of her past beyond her medical issues, and I don't force anything - have actually fired therapists who did try that.

Regarding the shudder - that is a response that she has to a lot of sensory stimuli. If she gets something sticky on her hand, she'll shudder. It's kind of a "Oh God, get this off of me!!!" kind of response. I wasn't at all surprised to see it with the food. We are working on desensitization through brushing and input of different textures.

Grace has a pretty bad cold this morning, so we're going to go easy with this - but still press on. I think consistency is going to be key (it always is, right?!).

Friday, October 24, 2008

Eliminating the NO option in feeding

VeeGee's feeding therapy is just going NOWHERE, not one inch closer to anything actually going in her mouth. So, I decided a couple of days ago, "no more fun and games." What I mean is that the feeding therapy that we've done is very play based (which, of course, suits my parenting inclinations quite nicely), but it's not working. At. All.

For the past three days I've been "forcing" her to eat three bites of pureed food (apple/banana). It goes like this: "Look, you've got some food to eat! I'd like for you to eat three bites, and then you can go watch Dora. Do you want to put it in your mouth, or do you want mommy to help you?" "NO!!!" (covers mouth with hands, turns away, pushes bowl away). I ask a few times, then say, "Okay, mommy will help you." Usually I've been able to get her to kind of open her mouth for me to put it in, and when I say kind of, I mean, I actually really have to sneak it in. She's swallowed about three or four times, the rest, she's just spit it out.

This morning, though, she, on the third bite, actually opened her mouth on her own. Her eyes were squinting and she was shuddering, but it was open. And she swallowed. I was so excited.

So here's the worry part: I do not want to create an issue where she is afraid of food, or that she feels forced or whatever. But the fact of the matter is that she is going to have to learn this at some point, right? I mean, I can't just let her keep ignoring all of the "gentle" "therapeutic" ways of cajoling her. I actually really think she's too ornery for that.

Monday, August 25, 2008

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.

Monday, June 30, 2008

Adoption/Birthday Celebratio

So, we did it this past Saturday, and it was incredibly wonderful. We sent out an invitation that said that we were celebrating both her birthday AND adoption. We sent it to both our family, including VeeGee's great grandparents, and friends because dh decided he didn't want to do any sort of different invite for his family. Before we sent the invites out, we let his grandparents know what the party was going to be about, that it was going to be a celebration of both. I think they are really beginning to be peaceful about the situation.

On her birthday, she got a card from her birthmother. I was SO relieved. It was actually addressed to VeeGee with our last name and was so so sweet. I am beyond thrilled about this, and am really hoping that we can keep up correspondence with her.
(Off Topic: I have been showing VeeGee pictures of her birthmother a lot lately as we've been redecorating her room with lots of family photos. She's had the strangest negative reaction, refusing to look at the photos and screaming "No!" while swatting it away. I'm concerned about this, an want to find ways to positively incorporate her birthmom's image into her life - advice would be welcome.)
Anyway, there were over a hundred people here!!!!!! Insane!!!! As a former chef, I NEVER run out of food at parties, but I almost did. Holy cow.

So, to the best part: I wanted to do something ceremonial, but not something toooo cheesy (just kinda cheesy). What I did, was get a spool of red silk rope and passed it around to the entire group (everyone was connected). I spoke about the "red thread" poem and expanded the image to include a sort of metaphorical umbilical cord. As we were all holding the same line of thread, we thanked all of our family and friends for holding us up through this journey and invited them to continue to be a part of the adopting of VeeGee into our lives and our community, symbolizing our connectedness to each other. We then passed around scissors and invited everyone to cut off a length of thread to make a bracelet, anklet, necklace or bookmark to keep as a reminder of our community. It was pretty neat, and I really think it meant a lot to a lot of the people in attendance. Without being too in your face.

Wednesday, June 4, 2008

Sweetness

I had to share a sweet little moment from our day yesterday.

VeeGee is extremely averse to having her teeth brushed. We only do it every three days or so because it's such an awful ordeal. So yesterday evening was the time to do it. I had her in position and "did the deed" with the usual wailing and kicking, red-faced fury, etc., etc. After it was over, VeeGee crawled up on my chest and laid there while I rubbed her back. I sat there thinking how incredibly resilient kids, and especially these kids who go through SO much shit on a daily basis just to live, are. I felt then, as I often do, overwhelmed by her generosity of spirit and her tenaciousness.

So a bit later we were out watering our flowers on the patio when I got my foot caught under a planter and hurt it (can't really describe the way it got hurt, just that it hurt like a something-or-other). I was saying, "Oh my foot hurts, ow ow ow, etc." and VeeGee came over and got down on her hands and knees and kissed my foot - two or three times. I immediately began to weep. It was such and incredibly tender and sweet act for her - so natural and yet so extraordinary.

It may be a small thing, a silly thing, but WOW, it really sent me .

Sunday, May 4, 2008

What Day Is It Again?

Well, it's been a pretty good day. VeeGee is extremely cabin feverish, but not so regular feverish, so that's good (and not so good). She's so ready to get out of here, and I think we'll be doing just that sometime tomorrow! Yeeehaa!! It's pretty late, and she's still not asleep so I'm going to play possum for a bit in hopes that she'll go to sleep and let me work for a moment or two (not able to get much of anything done here in the hospital with so many interruptions and, oh, the crying baby and all ........). Much love to everyone - I hope to see you all soon. Wendy & VeeGee

Saturday, May 3, 2008

Happy Saturday

Happy Saturday! I hear there were some lovely storms yesterday in Memphis, but that today is beautiful. I'm glad. It's nice here (we have a lovely view of building tops!).

VeeGee really well last night, but continued to run a fever through the night, even with the Tylenol. I think partly because the palate is closed and partly because she's sleeping with her mouth open, but she is snoring like crazy!!! It makes me think about my great grandmother and grandmother - the champion snorers of all time! I think VeeGee have given them a run for their money if she'd had the chance. Her doctor was in this morning and said that her palate was looking good, but that she was a little concerned about the fever (not too much). She had thought we might get to go home this weekend, but it looks like we'll be here at least another day or so, which was really the original estimate. We were just hopeful because we don't have to wait for her to start eating (we'd be here a good long while if we had to do that, I'm afraid!) because of her g-tube. Oh well. We had some good play time this morning and a nice bubble bath. I got some grainy pictures from my laptop cam that I'm posting here in a minute. Say prayers for VeeGee that the fever will break and the pain will begin to lessen. She's so brave and funny, you'd all be so proud of her. Thanks for loving us. Wendy & VeeGee

Friday, May 2, 2008

Night in ICU

Today's been a roller coaster! Nights in ICU are not like those in a regular room. There's lots of light and beeping - full windows on all sides. VeeGee is connected to lots of wires, and for whatever reason the leads monitoring her heart are adult-sized, so they're pretty uncomfortable. She's also on a pulse-ox monitor, an IV tube and her feeding tube - in all, seven tubes/wires, bless her heart! As usual she's a firecracker and a champ! What an awesome personality - I'm so proud of her. We had fun playing and talking with Daddy on the phone this morning. Soon enough, she'll be able to pronounce the "d" sound and will stop saying "ah-ee" for "daddy." I think we'll kind of miss that. The doctor came in around eleven and said that she was looking great. Again, because of her feeding tube (!!!!), she may be able to come home much sooner than they had originally told us - maybe even this weekend. One concern, though. Once they backed off of the Tylenol from every 4 hours to every 6, she started running a fever. There are a couple of possible reasons for this. First, it could be because she was particularly angry at the time that we took her temp., and second, it could be that the Tylenol had just been keeping the fever at bay. I'm a bit inclined, unfortunately, to think it's the latter in this case since VeeGee generally runs a low temp (around 96, usually), and so any fever is actually more of a fever than it would be for other kiddos. Also, she just had a fevered look in her eyes. After the Tylenol, though, she's back to her "fair-to-midland" self. So, we'll just cross our fingers. BTW - we are about to be (finally) transferred to a regular room. YAY!!!!!