Sunday, August 29, 2010

Progress

Thought I'd share some old videos so you can see how far this amazing little girl has come!

Saturday, August 28, 2010

On TMI and One-Upsmanning

Sometimes I worry about "putting too much out there." You read about this stuff, right? We're supposed to protect our kids from, well, from all that bad stuff, whatever it may be. I'm all for responsibility, but the reality is that, if someone really wanted to, they could drive up to my house and figure out a way inside. Right? I mean, unless I find a way, and make the effort, to go "underground," I'm living a public life. Does that scare me a bit? Sure. But not that much.

As an adoptive mom, it seems like there's an extra onus placed on our privacy. Maybe it's because we've seen more closely what the ugliness of the world can do to a kid, and I'm not just talking about kids who come to their adoptive homes like mine did, through CPS. Even kids with "easy" adoptions have a measure of ugliness, a sense of erasure, that they carry with them through life.

No matter how hard you try, or to what extent you believe yourself to be separated, I believe that's a falsehood and an impossibility. Your child will never be completely separated. And, neither will you. You could move to Antarctica, with no internet services, but the reality of adoption will exist in your lives. And, if you're trying to deny that, or in some way sublimate it, it will likely, as most things do, become even more central to your, and your child's identity.

I don't have a good relationship with my daughter's birth mother. It's not all wine and roses by any stretch of the imagination. And I DO severely restrict, to the extent that I'm able without becoming a totally emotionally obsessed woman, photographs in particular on Facebook. But, at the same time, that stuff is out there, and I'm a somewhat public person because I write about my daughter, and am published doing so. I've come to the conclusion that I want my daughter, and her birth mother for that matter, to have the record of me working out my own identity, part of which is that of an adoptive mom (who dealt with years of infertility), because that will model how I hope she can learn to work out her own, flawed and bruised and scarred and lovely and amazing, identity, part of which is/will be an adopted child.

Are there boogiemen/women out there? Of course. Are there dangerous birth parents out there? Of course. But, it seems to me, that "protecting" my child (though in reality this seems like more self-protection, rather than the child's protection) is best done by showing her how to navigate the dangerous world, not run from it.

One of the things that I'm learning as both an adoptive mom, and the mom of a child with a heretofore unrecorded genetic disability, a child whose birth mother refused to get her the help she needed -- to the point of near-death, is that, even though my situation feels unique, and in many ways IS unique, it's very dangerous and isolating to declare that no one has any access to what I'm going through, that no one can speak to my situation because they're not going through exactly the same thing. There is something in me that wants to hold my hand up to people and say, "You don't understand." This isn't unique to the adoptive community, unfortunately. This "game" gets played out all over parenting boards, special needs and adoption-focused, and probably everywhere else too. I don't really know why.

Fact of the matter is that there actually are some universals. And that's a function of the reality that there are universals within our human-ness. People need connection, even to those who've hurt them. But even beyond that, the connection exists whether we choose to acknowledge and/or facilitate it or not. What I hope I'm teaching my daughter is how to relate/interact with people who are not kind, not good, even, at times, very bad. That's the real world. Can I force her to forgive her birth mother/family? No, and I wouldn't want to. Can I show her how to live a life of acceptance and positive change? Yes. I can try. I would think this would be even more important for older kids. Addresses? Nah, not what I'm suggesting. I don't think anyone is. Not even visitation necessarily. Just, really, more of a posture of openness to the fullness of the kiddo's identity, which includes his/her family of origin.

Thursday, August 5, 2010

Busy Summer

So, yes, as all Bloggers say, "It's been a while." As if anyone is sitting on their hands pining for my musings. I'll make this one quick, as I've got to get to the store, but will try to be a bit better about updating. I'm really grateful for all of you who follow this and are supportive of us, and her. It's a wonderful blessing to have such dear and kind friends.

VeeGee's pharyngeal flap revision was at the beginning of July. We had been warned that there was a good chance that she would have significant loss of speech production, or, rather, that there would be significant increase of nasality in her speech. We went ahead with the surgery, nevertheless, because we figured, hey, breathing's more important than talking. Also, (and I think I may have covered this before) it seems to us that her WILL to communicate is surely going to overcome any of these setbacks.

We went to Vanderbilt prepared to stay for a long time, partly because we were going in on the holiday weekend when we were sure that most docs, our primary surgeon especially, would be on vacation. Also, we remembered last time (in April of 09) where we thought we'd be there three or four days, and it turned into 12. We were really amazed when they let us out in just over four days. AMAZING. AND, best of all, it doesn't seem that her speech has been too negatively impacted. We can definitely tell a bit of an increase in nasality - but, who cares?

So, she's starting kindergarten this year. Of course, we have to go to Nashville on the first day of school. Ugh. THIS doctor is addressing her GI issues (stop reading or blink if you've a sensitive stomach). This poor child cannot poop. Not without adult-dose Miralax every single day. It is horrible. And that matters, too, because if she can't eliminate, she can't increase her caloric intake (still 100% g-tube), which means she can't gain weight (she hasn't gained an ounce in over eight months). It's a stressful thing to watch your baby retch and retch because she's too full, knowing full well that she's not gaining weight. The GI has done two separate biopsies for Hirschprung's Disease, both of which came back negative, though that doesn't mean she's actually negative, just that they've not snipped the part of the colon affected. A part of me wishes they could just "install" a MACE and be done with it. K just can't stand the thought of yet another hole in her body. We'll see.