Sunday, December 28, 2008
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.
Wednesday, December 24, 2008
So, we finally got out to grandparents house after dark at about 6:15, which is something I explicitly did NOT want (an evening visit). VeeGee had fallen asleep in the car (of course) and had a giant poopy diaper. I had to go directly in and change the sleeping baby, which was actually great for me to kind of catch my breath and re-rehearse with VeeGee the names of the people she was about to see. I asked her if she wanted to walk out there and she said "no" - odd because she LOVES it there, it's like her own little queendom, the way grandparents' houses often are - so I carried her, with her head buried in my neck .
Her reaction was strange. I said, "Oh wow, look we have friends here to see us! Look, there's Grandaddy and Uncle T. and Bmommy (we are using her first name), do you want to say, 'Hi'?" She clung to me pretty hard and when I walked closer to anyone, even her grandparents that she knows and loves, she turned away. It was odd because she had been chatting it up with the aunt that we'd picked up from the airport.
Anyway, so that went on for a while. She finally got out of my lap and huddled behind me on the couch. Eventually she started kind of doing the peek-a-boo thing and then, when she realized there were PRESENTS!!!! under the tree for her (!!!) she climbed down and went to it. That was lots of fun and I was impressed with the presents that they brought for her - they'd really actually thought about it, which was just really really wonderful. I thanked them a bunch.
It was also nice because we could all sit there watching her without the need for much conversation. As K said it later, "She was ON! Like a rockstar!!" I mean she was giggly, happy, and all-around hilarious to watch. We had to stop her or she'd have opened all the gifts that weren't for her (though I doubt anyone would have cared). She also sang with the music that they had playing (through the Christmas tree - tinny Christmas carols that made me want to cringe after just a few minutes ).
By the end of the evening she had given out plenty of hugs to everyone, said lots of thankyous and iloveyous and Birthmom even got a snuggle and a picture.
When we got back in the car she actually said, "Whew!" and then a little later, "No more people mommy, daddy." We assured her that that was all for the evening. And then we did our nightly Christmas light tour. All in all it was a pretty remarkably wonderful evening.
For me, it was deeply, deeply special that she clung to me and was very clear in her attachment to me. We've really worked so hard for this and it was just a blessing. In a way, too, I think that it made bmom feel good - at least she seemed to be pleased and amused - to see VeeGee confident in her place with us. During the entire evening there were no name slip-ups (a huge relief) and both bmom and grandaddy referred to K and I as daddy and mommy.
We know that there's a very good chance that we won't hear from them again for a long time (though bmom, who had thought she was coming for New Years instead of Christmas, said that she had ordered presents for VeeGee that weren't scheduled to arrive until after Christmas and that she'd send them along when they came in). Still, for the evening that it was whether it was a one-time thing or not, it was good.
Tuesday, December 23, 2008
We also decided to pick up K's aunt who's flying in and take her when we go so that there will be more than just the VeeGee-bmom-grandaddy "event" going on and so VeeGee will feel less pressure to be the focus of everything.
Y'all, I'm so nervous, and sad, and worried. But I'm trying to leave that gunk here instead of bringing it out there. I want VeeGee to read total safety and relaxation coming off of me so that she can also feel those things.
Sunday, December 21, 2008
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.
Thursday, December 18, 2008
Saturday, November 8, 2008
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?"
Tuesday, November 4, 2008
That's where we are this week. And I'm really not doing okay with it. Neither is K
I know it's going to be okay - it just feels really rough right now. VeeGee's therapists confirmed her need for AFOs yesterday (I know that's not really a big deal) and today with her OT was just WAY emotional. They think she needs to also be seeing a psychologist to help her deal with some of the abuse/neglect issues that caused her to be taken from her birthmom and that are exacerbating her already pretty severe SPD. I'm just so so so sad for her. And freakin' pissed at her birthmom/grandfather.
And tonight I have to get up in front of a bunch of people to read from my book that I don't even care about any more. I'm having DH introduce me at the event and we're both just kind of shell-shocked so we have no reserve of humor/wit/savoir faire to bring to this tonight. And, VeeGee, of course, be in the audience yelling at me, I'm sure.
I'm sorry to whine.
Oh, and we've totally nixed the feeding stuff. . . . . .
Saturday, November 1, 2008
off to swing from the branches now . . . . . . .
Friday, October 31, 2008
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).
Wednesday, October 29, 2008
This morning started out rough too, but she rallied and finished her six bites without protest.
It feels like two steps forward three back and so on, but I am still convinced that we're doing the right thing. When I told her OT what we were doing, she was visibly relieved (I think they think she's kind of spoiled at her therapy clinic and this is the replacement OT for the one I fired for putting VeeGee timeout during a session ). She also likes the idea of not letting her wipe her face off with a napkin during the session. I'm back and forth on that one. I know I'd be stressed with apple dripping off my chin!
The OT also suggested ramping up in other sensory areas so that this isn't such a blip on the screen during the day (does that make sense?). We're brushing more, join-compressing more, etc. etc. It feels as if VeeGee is really in a growing spurt, and I hope that all of this will help her cope.
I'm letting her wipe some. But I am waiting until she asks for it - so that it might increase her body-awareness (which is a HUGE issue for her). It's rather pitiful because she wants to wipe with the back of her hand, but then freaks because there's stuff on her hand. I feel for her - I'm pretty freaked by this stuff too.
But that's the thing: it's about letting her integrate these sensory experiences, about helping her process them in a way that will allow her to more productively navigate her world. There are things that, because of my own sensory issues, I simply cannot do, that are WAY TOO STRESSFUL for me because of my inability to handle certain sensations. I really don't want that for her and I hope that I'm able to help her overcome it, to the extent that she can.
VeeGee has been saying "oh mo mo may" forever. I never knew what it meant until the other day when I was watching Diego with her. Turns out she was saying "Ayúdame" - which means "Help Me."
Great! I've been ignoring her pleas for help all this time!
Monday, October 27, 2008
We just believe, along with her therapists, ENT, GI, and Ped, that she is ready cognitively as well as anatomically, to ramp it up a bit. I most definitely will not force anything - but in this short time she has gone from shaking an crying to just opening her mouth and swallowing. It's pretty amazing, and I have to keep reminding myself that it has been appropriate to NOT do this before now. I actually am feeling more guilty about not pushing her previously than I am about pushing her now.
She has always mimicked eating, tried to feed us, wanted to sit at the table. We just haven't made any issue of her food avoidance. It's not that I think I was wrong to have been "easy" on her, I can't help but wonder if, as soon as we got the go ahead (which was months ago), we'd be so much further along.
So, it's kind of funny (though I totally understand where y'all are coming from!!!!!) that this has kind of come off as if I'm pushing too hard - because my greatest concern was that I hadn't pushed hard enough.
Sunday, October 26, 2008
Saturday, October 25, 2008
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
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
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, July 7, 2008
Night before last, hubby mentioned, uncannily just as I was thinking the same thing, that I ought to keep a dinner diary. I have been, to quote him, "Hitting it out of the park," lately with my culinary creations, most of which are conceived about 45 minutes before it's time to eat. Take that Iron Chef!
For a long time, a long time ago, I thought I'd always be a professional chef. Now, I just do dinner theater, watching the demi-god known as Bourdain roam the planet eating pork like Bubba Gump ate shrimp. I love that man. No really, I love him. Like him, though, I think I'm just too old now to belly up to the old Vulcan to sling carmelized shi-shi.
So, now that I decided to write about dinner, well, it's time to go cook dinner. Tofu satay tonight.
Monday, June 30, 2008
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.
Thursday, June 26, 2008
We could very very easily lie to VeeGee (by omission) and never tell her about how she came to us. She looks just like K (since she's his niece by birth) and there would truly never be much of a reason for her to suspect that she was adopted.
And that's a problem. VeeGee deserves to have her story, her truth.
And that birth certificate is a false document. It says that I drove across my state to give birth to her - in a place I've never lived. So what might that mean for so many well-meaning women who adopt and just want to step in and BE their kid's mom, for whom that birth certificate is sort of prize? It might mean that there needs to be an outside mechanism, a legal safeguard of adopted children's stories, that will help us emotional moms do the right thing. That's why, at least one reason why, reform is so necessary.
Wednesday, June 4, 2008
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 .
Thursday, May 29, 2008
As to "meant to be," that's more complicated. I'm not sure who said it in the other thread, but it's like it was meant to be in a certain sense, and yet, surely the pain of the event that landed us here at adoption cannot have been meant to be, either for VeeGee or for her birth mom. But, on the other hand, I feel so deeply that there was this eerie connection between us the very first time I met her (a year before custody of her was even a faint question or possibility). I somehow knew that we'd end up being her parents. I even told K that. (I know it's corny, but that's why I'm drawn to the red thread myth.)
So, how might I tell her this story in such a way that doesn't indicate that I think the things that happened to her had to happen to her? I know it's time for us to begin thinking about how we tell her her story, and I'm so concerned about doing it the right way, a way that includes all of her history, but doesn't wound her further.
The more I think about it the more I realize how very intimate this conversation will be, must be, and, as such, it will evolve out of the intimacy of our relationship as the relationship evolves. It really can't be scripted, especially not right now. I guess my asking this of myself at this stage is like asking myself why I was getting married on the day I did. I needed to have an answer for that day, but I didn't need for that answer to be the be-all-end-all answer for eternity (thank God!!!). Really, I don't think I had a clue about why I was doing it . . . it was actually the "I looked in your eyes . . . " That's not to say that that sentiment has gone away. In fact, it has only increased and become clearer.
That said, I do need to begin to decide on some of the terms of the story, bmom's name, for instance, because it does come up. Also, we were such starkly, vehemently, childless for so long that I am still very frequently explaining the situation (though with fewer and fewer details as I realize how much language she's acquiring lately) to people who haven't seen us in "the scene" in a while. .........
Thursday, May 15, 2008
As is typical for me, I would rather do just about anything than the work that I'm supposed to be doing. I have several projects that I just cannot seem to bring to conclusion. Fellow procrastinators, what is it that causes this? I mean, it's not, actually, that I wait to the last minute. No, I don't wait to begin things at all. I just don't finish. I keep on working, or, at least, I keep on thinking, on the project: how can I make it better? what else do I need to include? have I covered all the bases? what the hell was the original assignment?
It's become so ridiculous that I've carried several Incompletes forward with me throughout graduate school. Please tell me someone else has done this and survived to actually get a job.
Oh, and that's the other thing. I am at that point in my career where it's time to start sending out the CV, figuring out what's next. And what do I find myself doing yesterday? Yep, looking in to PhD programs in ANOTHER discipline. Ugh - what's wrong with me?
So, rainy Thursday, I yield myself to the project at hand. I sign off with hope.
Wednesday, May 14, 2008
Shall I practice what I preach?
Well, I have to admit that my blogging hiatus has been caused in no small amount by the fear of "wasting" all my good writing, or my writing energy, or brilliant ideas on a blog - instead of on something for which I might get paid (or at least which will contribute to my thesis). Has anyone else entertained that fear?
But, I think, since the productivity is just about nil at this point, may as well waste away, huh? Maybe it'll get the juices flowing. God knows I need some juice.
So, this felt good, and Barney's coming on, so now I'll have to go do something else. VeeGee needs my attention (oh, and there's another reason for the hiatus).
Here's hoping I can keep this up. Wouldn't that be great? Yep, it would.
Sunday, May 4, 2008
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
Friday, May 2, 2008
Thursday, May 1, 2008
Wednesday, April 30, 2008
Monday, April 28, 2008
We're off tomorrow to Nashville for another surgery for VeeGee. This surgery is to repair the cleft palate which is caused by her disorder, Pierre Robin Syndrome, and is the sixth surgery for her since September. We'll be in ICU for a couple of days and then in a regular room for 4 to 7 days. In our case, for once, VeeGee's feeding tube is a plus. Because we won't be waiting for her to be able to eat post-surger
And I look back at my posts here wrestling with the emotional roller coaster of her not calling me mommy (seems funny now), about her name change, about how to deal with being alone in the hospital in the middle of the night unable to read the erratic monitors.
So, today is the day. In two short hours, she becomes ours not just in our hearts, but according to the law. It's a bittersweet day. We finalize at 9 and bury my uncle at 11. The circle of life indeed. I am also keenly aware today of the loss that today will represent for VeeGee's birth mom. I really feel for her. No matter how awful I think she's been, this still is a hard, hard consequence for her actions - one that is incomprehensible to me, really. I truly hope that she will heal from this and become a happy content adult with whom VeeGee can have a wonderful relationship.
I am overwhelmed with emotion this morning. The rain has moved on and the birds are chirping in the wet branches of the trees that are hanging over my window. VeeGee spent the night in our room last night because her uncle is in town for the funeral and in her room. I am so happy to have been able to watch her sleep - by the glow of the feeding pump.
Well, I'm not making much sense now. Celebrate with me today!!!!!!!!!!!!!!
Tuesday, April 15, 2008
Well, I'm excited and nervous and totally fried. VeeGee and I have been at Vandy for the past two days. We have seen six doctors (craniofacial surgeon, allergist, GI, pulmonologist, and the GI surgeon), had allergy bloodwork (bless her heart), X-Rays, and, ahem, an enema. I have NEVER seen ANYONE suffer like my baby girl suffered after the enema (saline). She screamed for forty five minutes straight, forehead flat against the wall, tiny fingers clenched, teeth clenched, And then she crawled into my lap and pooped 9 days worth of poop all over herself, and me. Pretty crazy. And THEN, we had to go have four vials of blood drawn. Naked. Well , her, not me.
So, the craniofacial surgeon, god bless him, scheduled cleft palate repair for the 30th OF THIS MONTH!!!!!!!!!!!!!!!!!!! "Our Other Doc," Dr. W*#@*&^, was going to wait until she was AT LEAST four. Meanwhile, she continues to be unable to eat, to speak (and be understood by anyone but me), to have repeated sinus infections ear infections, blah, blah, blah.
Anyway, Other Doc fired, Vandy dude rocks.
There are concerns, though, about the repair. It will be the second attempt. The first attempt was when she was 6 months or so (before she came to live with us) and there were serious fissures (like so serious that every doctor who has looked at it as recoiled in shock, that is, every doc except Dr. W*#@*&^, who, apparently has NEVER ACTUALLY LOOKED). So the primary concern is that there might not be enough tissue to make the repair without further fissure(s). The other options, as I understand them, are to pull tissue from the cheek and/or a pharyngeal flap. This doc does not think a tongue flap is a choice for VeeGee b/c she's too young to tolerate it. Same reason not to do an obturator.
Friday, April 11, 2008
She's finally moved into her own room. The separation was really hard for me, but she seems to be all "here's your hat, what's your hurry?" about it. It's nice having a grownup room again after a year, but I'm still missing waking up to watch her breathe in the middle of the night.
Next week we're headed back to Nashville to consult with a new craniofacial specialist, who will be taking over her care relative to her cleft palate fissures. The repairs are going to take time, but we feel like the doctors at Vanderbilt are both more proactive about her treatment and much more team-oriented than what we've been experiencing here in Memphis. We're also going to be seeing a pulmonologist, a GI doctor, and an allergist. She's been dealing with a rattly chest for quite a while, despite twice a day inhaled steroid treatment; as well as some developmental issues with her digestion that we are thinking might be relative to food allergies. We'll see.
She is still 100% tube fed, though, with her feeding therapy group, she's 'entertaining' the idea of touching some foods with her fingers. Occasionally, something makes it all the way to her mouth, but we've yet to see any intentional swallowing action. She will drink water though, lots of it! I think that's about all for now. We hope you all are well and that this update finds you as happy about the sunshine and spring weather that we are!
Tuesday, April 8, 2008
Our atty is going to file the notification of default on Friday and then there will be a default hearing next Friday, at which he will request a finalization date of APRIL 28TH!!!!!!!!!!!!!! Three weeks! I cannot believe that we're almost there. It's just crazy.
So, now I'm planning some sort of consecration ceremony.
I'm just beside myself and wish the days would go fast!
Wednesday, March 19, 2008
Sunday, March 9, 2008
VeeGee has GERD and has thrown up pretty much constantly since she was born until she had a nissen fundo in January. Thankfully that ended the vomiting. And, for the first time, we can see inside of her mouth without her completely clenching her teeth. I know it might seem ridiculous, but we've just never been able to fight her hard enough to be able to see inside her mouth without her throwing up. But now we can.
Anyhow, we've discovered that her teeth are almost black - likely from the acid and the "neglect" and the massive amounts of antibiotics. SO, we've decided to start brushing them. And you'd think we were torturing her.
I'm used to torturing her, to her screaming in pain or agony or fury. I HAVE to do horrible things like give her breathing treatments, change her trach (until last month), clean/rotate her mickey button, oh, and change her diaper. I have to hold her down, probably hurting her, when nurses change her IVs, take her blood pressure, her temperature, her ears.
And now I'm wondering just what she understands. How much am I supposed to hold her accountable (I don't even know if that's the right word) for her occasional hitting, throwing and other 'misbehaviors' - mostly mild, really? Her therapists complain about compliance, and I just don't know how much more I can push her.
How do you establish boundaries, 'rules' or whatever when you're not completely sure that your little one understands? How do you cope with people who think you spoil your child because they aren't always 'following instructions' or whatever?
Thursday, March 6, 2008
She hasn't called or written or sent a gift or ANYTHING in almost a year. You'd think she was pretty much over 'seeing her.'
I'm trying so hard to not be angry with her. Anger can't be good - for me, or for VeeGee, or, especially right now, for K. He's really suffering over this because he just feels like he's lost all of his family now in this decision. I don't think he'd change anything, but it's just hurting him. His grandparents, who are functionally his parents, have decided not to 'choose sides' between their grandchildren (K and his sister) - which means that, effectively, they're not supporting us. His grandmother, further, keeps insisting that 'this isn't A's fault, it's just that she was so young.' VERY FRUSTRATING.
But, still, today is day one.
We have decided to change our daughter's name, and we are giving her my grandmother's name as her first name and Grace as her middle name, reflecting the miracle of her entry into our family. The name she had did not have any family history (for her or for us). When we told the in-laws, their (HER) first response was "V?" (sneer) "where does that come from?" When K her that it was my grandmother's name and that she means very much to me, all we got was a sniff. Then, later, when she was saying goodbye to dd, she kept saying "Bye A" and when I gently and quietly said "VeeGee" she said, "Well, I'm just not ready for that yet." I didn't make much of it because she had just found out. I understand that it's going to take time getting used to. But, now, every time she sees VeeGee, she continues to call her A, insisting that she's just not used to it. She doesn't correct herself or anything.
Today, K was speaking to them and they were still protesting the change (it's been two months). They're angry that we're not offering an "olive branch" on the name issue. What the hell is that supposed to mean? Like, uprooting out entire existence, going into debt, wrenching our hearts out over this precious girl who was abandoned and most certainly going to be adopted by STRANGERS isn't "olive branch" enough?????!!!!!!! And then, piece de resistance, they asked K why we'd chosen a name that had nothing to do with VeeGee's family. Yep, I AM, APPARENTLY, NOT VeeGee'S FAMILY. Rich, huh? I'm so angry I could spit. And the worst thing is that this is really breaking K's heart. I don't want to keep ranting to him about this because I don't want to hurt him, and I don't ever want to sever VeeGee's ties with her grandparents, but I'M DONE being "their granddaughter" as they've called me for so long. (They're actually dh's grandparents, though they function more as his parent parents.)
NOTE TO FLAMERS/BIRTH MOTHERS: I've already been set on fire about the name change thing. That's a done deal as far as K and I are concerned. What I'm hurting over, what he's hurting over, is the fact that, apparently, membership in this larger family is conditional. And we're blindsided by that.
Friday, February 15, 2008
Thursday, February 14, 2008
Wednesday, February 13, 2008
Tuesday, February 12, 2008
I'm starting to get excited now! VeeGee for almost three hours and her sats never dropped below 96%!!!!!! This is really, really great news. She's just singing and dancing - what a super champ! If only we had a drumset in the hospital room, everything would be perfect.
VeeGee's pretty rattly this morning, but they're still going through with capping her off. She's been capped for about 10 minutes and is still at 98/99 saturation. They said that if there was a problem it wouldn't necessarily manifest right at first. I'm feeling like I've got to be super vigilant (more vigilant? is that possible??) to watch for signs of stress. But, she's babbling and watching Elmo, so, so far so good.
She dropped to 95 for a while after her breathing treatment (odd?) but is now sleeping and at 97 for a bit. I think this is actually going to happen! I can't really believe it. It seemed like we'd have the trach forever, and now it looks like my sweet little champ is going to go home trach free on Thursday. It feels too good to be true.
I know we've got a long night ahead of us - she just dropped again - but I'm really feeling positive. And it feels GREAT!!!!
Monday, February 11, 2008
And in other news, VeeGee began her several day process of decannulati
During the bronchoscop
Dr. G said that he had seen a few patients with airway's as small as VeeGee's who had done well enough to avoid further surgery, but he wasn't overly confident that she would be able to do so. There are also complicatin
She's just woken up from the anesthesia and is very active, so I'll sign off. We're not getting a room tonight because the hospital is full, unfortunate
Sunday, February 10, 2008
And the transition is going well. The new middle name/nickname has the same ending sound/syllable as her old first name/nickname, and when I ask her, "Are you *new name*?" she nods enthusiastically. AND she can say it so much easier than her old nickname.
So, today, we're telling the in-laws. Should be interesting. I'm thinking they're gonna hate it, but they never even said the other nickname right, instead calling her "insert terrible automobile name here" which is just awful, right?
I'm feeling very peaceful about this all. Finally.
AND tomorrow she gets her trach out!!!!!! HUGE MOMENT!
Monday, February 4, 2008
Monday, January 28, 2008
You're just so thrilled to see poop at all that you don't mind cleaning it up!
Or you've quit worrying about telling people what her trach does and started just telling them it's a necklace. . . . And you don't hesitate grabbing somebody else's kid who decides they'd like to take that necklace.
Or you answer that stranger's pitying, "Oh is she okay?" question with, "Yep, just fine, and you?"
Or you've quit worrying about the vomit streaks on your clothing "as long as it doesn't smell too bad."
Thursday, January 24, 2008
It's true that I don't like the name her birth mother chose for her. But, really, that's only a tiny part of the issue. I want to be a part of the name that she will carry into her life. It's really important to me.
I think that K finally is beginning to understand where I'm coming from. He said last night that he had thought that it was mostly an aesthetic thing for me. It's not. Lot of people have the name that A has now, lots of people think it's a beautiful name. That's irrelevant to me. I'd just like for her name to reflect and commemorate the experience we're going through, that she's going through.
Wednesday, January 23, 2008
Problem is, K and I are having a hard time coming to agreement on this issue. He would like A to have some of her birth name and I'd like to change it completely. I really would love to erase the ownership that maintaining A's "given" name allows her birth mother (my SIL). I've been telling K this for a year now.
Turns out he hasn't really been taking me seriously, like not even seriously enough to form an argument one way or the other. And I'm just finding out how "unseriously" he's been taking it TODAY.
So, he said, "Start making a list of names that you like." HUH? I've told him THE name I'd like, been telling him THE name I'd like for almost a year - though probably longer than that in the "what would you name a little girl if we ever had one?" game. And he said, "anything else?" Nope, but I'd consider any suggestions that he'd make - he's just not making any - unless you count adding HIS last name (not mine) to the end of her name. I don't want to hyphenate her name.
I just want him to be invested in this part of the adoption, I want him to be proud of and have input on this very important part of the experience.
On to the other issue (sorry this is so long): I know that there are lots of people who have said that changing her name altogether would be wrong. I just don't think so. She's being given an entirely new life and a new family. The name I want to give her is traditional within my family, and we have a very strong and, in my opinion, lovely family bond that I'd like her to feel a part of in a special way. Giving her the name of her grandmother and greatgrandmother would reaffirm the new bond that the adoption is creating.
Tuesday, January 22, 2008
Thursday, January 17, 2008
So, home for a couple of days and A's still recovering well. We have hit one little bump in that she's having trouble with retching when her stomach gets overfilled.
Wednesday, January 16, 2008
I have such problem with this way of thinking. I can't have children of my own, have had three miscarriages, and yet my sister-in-law has a little one at 16 who has "special needs" and goes on to leave her in a crib wallowing in her own vomit alone, with the door closed, for 16 months before DCS FINALLY stepped in. Now, we're playing catchup with all of the surgeries and therapies that she should have had when she was teenincey. Actually, she's still teenincey because of her mother's neglect. And I don't care that she was/is a child - blah, blah, blah.
God didn't do this to my sweet little one. God just didn't. God may have intervened through the hands of DCS, and then mine, but God did not cause my little one to suffer. Her birth mother did.
Also, we are just, for the first time, beginning bolus feeds, but she seems to be tolerating me pushing the formula A LOT faster than the doctor indicated. In fact, I don't think she could sit still for 30 minutes while I bolused her. Is there a chance that I'm messing her up by going too fast
Tuesday, January 15, 2008
Monday, January 14, 2008
Yesterday after I wrote the post, the doctors decided not to start her feedings of formula until this morning (which they did at 7am), and they didn't stop the epidural until 7 also. They switched her to IV oxycodone (NOT oxycotin, like I thought they said earlier - whew!!!). I can tell a bit more agitation, but I think she's handling it pretty well.
The last hurdle we have right now is to see if she will tolerate the formula. So far, so good since 7. I'm so thrilled. She's gotten really, really upset several times this morning which, before the nissen would have yielded profuse and unending amounts of vomit. Yahoo!!!!!!
They just took the epidural out a few minutes ago and the full Wrath of A was unleashed. And still no vomit! One major hurdle is left, and that's to see what the residuals are in her stomach after these feedings. This I'm a little more concerned about because when the nurse and I checked at about 9, there was more than one hour's worth of formula still in there. The doctor is okay with one hour's worth of "residual" but no more. Hopefully this will resolve within the next couple of hours.
Sunday, January 13, 2008
Thanks for the all the messages!
Tomorrow is K's birthday, so I think he'll be driving over for an overnight stay with us. Pray that he has safe travels.Y'all take care and enjoy your Sunday. I probably won't post again until tomorrow unless something major happens.
The pain team is going to allow the epidural bag to run out and then start A oxycotin IV. Yikes. They're going to leave the epi in, though, in case something happens or if the IV pain meds don't work well enough.
Y'all should see her. She is such a NUT! After her last surgery they had to release her without taking her b/p because she was so violently opposed to it. THINGS HAVE CHANGED! She has decided that having her temp taken, her b/p taken and having her heart listened to are the most amazingly fun things. Whew! As a matter of fact, one of the care partners brought her a spare thermometer
I had to raise the rails of the crib because she's so chipper today and is standing up a bit. Which means, of course, that she's constantly tangled in all of her wires and has pulled the leads of her chest twice already this morning. Still, it's heartening to see her cheerful.
Thanks to everyone for the sweet messages. They mean a lot.
Saturday, January 12, 2008
I haven't heard from her doctors yet, though they apparently spoke briefly with the nurse at five and said that they would need to meet as a team to discuss what to do next. I don't know when that meeting will be, but I'm hoping it'll be tomorrow.