Thursday, October 29, 2009
Diary of a Mad Housewife: Micah and the New Normal (or: William and His Doll are So Yesterday!)
Thursday, October 22, 2009
Coming Attractions
Last Sunday Michael preached a sermon on James and John, two of Jesus’ disciples who, with a stunning lack of humility, conspired to reserve for themselves the seats of honor on Jesus’ right and on his left in his coming glory. Can you imagine? Wanting to be special like that? Sheesh.
Of course, as Michael suggested in his sermon, we probably all have a bit of that – ambition, a drive to be successful, to be great even – or at the very least, a need to be recognized, affirmed. In its most basic form, it seems to me, this is really just another way of saying that we all need to be loved.
Of course, our need to be loved can play itself out in many ways, some of them not so humble. Often, our need to be loved plays itself out as a need to be loved over and above everyone else, to be greater, better, more special. I mean really, James and John were already Jesus’ disciples for crying out loud! What more could you want?
I doubt Jesus’ response was all that satisfying to James and John, and it can be hard medicine for most of us still today: “…whoever wishes to become great among you must be your servant, and whoever wishes to be first among you must be slave of all. For the Son of Man came not to be served, but to serve…” (Mark 10: 43-45) Jesus doesn’t say that we can’t be special, that we can’t be great, but he redefines greatness. As Michael put it, Jesus asks not that we give up our drive to be first, but rather that we turn our drive to be “first in love … first in service.” Michael suggested that Jesus “democratizes ‘greatness’ if you will. Everyone can be great, because everyone can serve…. Beloved," Michael continued, "Service is the rent we pay for the room we take up in this world. Not something we do in our spare time, with what’s left over. But our purpose in life. Everyone can be great. And it’s one of the most beautiful compensations in life that no one can sincerely try and help another without helping himself. The best way to become yourself is to lose yourself in the service of others. Everyone can be great. ‘We cannot truly live for ourselves alone. Our lives are connected by a 1000 invisible threads, and along these sympathetic fibers, our actions run first as causes and then return as results’ (Herman Melville). Everyone can be great. We can’t foresee our lives’ twists and turns, but one thing we can know: the ones who live best will be those who’ve sought and found how to serve. Everyone can be great. Children of God, Disciples of Christ, find your real job, and do it. Understand real success and go for it. Everyone can be great. Amen.” (Michael Ward Caine, sermon to Old First Reformed United Church of Christ, Philadelphia, Pennsylvania on October 18, 2009)
I agree with Michael that everyone can be great. I agree that Jesus calls us to a different standard of greatness than the world calls us to, and that Jesus’ standard is how well we love and serve one another.
I agree, wholeheartedly, indeed this is at the heart of my faith as a Christian … and yet, and yet … that doesn’t feel like the whole story to me. Or rather, I should say, that’s not my whole story. And I want to tell you my whole story about service and greatness and my need to be loved. I want to tell you because I think it is sort of easy to be a little polly-anna about how nice and good and right it is to serve others, but I am here to tell you it can be pretty fucking hard too. And our actions, that “run first as causes and then return as results”? Sometimes the results aren’t what you’d expect. And you still find yourself yearning for a pat on the back, to be special, to be loved.
A couple of years ago I stopped blogging at the wide tent for several reasons. One was that I found myself starting to feel ambitious as a writer, wanting to be read, and recognized, to be one of the important and successful bloggers – but I didn’t like the writer I became when I was motivated by ambition. I felt that my words, in my mouth, on my fingertips, that they were often righteous, and lacked humility, that I was trying to bring craft to my work not so that it would serve others but so that it would reflect well on me. And when I did try to approach my writing with humility, I would just be left wondering, “Who the hell am I anyway? Why do I think I have anything so special to say?” Either way, it was sort of paralyzing.
Another reason I stopped blogging was that I had hit a wall when it came to writing about race and poverty. I was and still am pretty in awe of Dawn’s writing about adoption, and as I have said before, I felt, and still feel, like I don’t have a whole lot to add. But poverty and racism – I felt like I actually did have something to say, and I was tired of the same old predictable white liberal script -- I wanted to break out, and talk about these things in new ways … but again, I just felt paralyzed.
Most importantly, though, I stopped blogging because I took a job, and I just really didn’t have any time. For almost two years, from early in 2007 until late fall of 2008, I became very involved in directing my church’s summer and after school programs for children and youth living in poverty in a neighborhood of Philadelphia called Kensington. By the end of 2008, I had burned through just about everything I thought I knew about myself, and I just collapsed.
Writing again here at my goodly heritage has been wildly theraputic, and while I don’t have all the answers about why I write, and how I write, and what it all means, I do know that I don’t feel so paralyzed any more. I feel like I have emerged with a new voice, and I will admit I like it. I also will admit that I like getting nice comments from all of you. I don’t know if I have more ambition than that right now, but I’m also pretty sure that if I do, it’s okay. And, I think, maybe I’m ready to tell you my story, my complicated story about service and greatness and needing to be loved.
This story is long, and it will most likely unfold over many months. So stay tuned. If you feel so moved, drop me a comment now and again and let me know what you think. I’m not too proud to tell you that it really does make my day!
Wednesday, October 21, 2009
Some Thoughts on Poverty, Coercion and Adoption
If you haven’t given much thought to adoption ethics and reform (and there’s no judgment in that – most people haven’t), this is probably not the best place to start, because you might feel like you've walked in on the middle of a conversation you don't really understand. Instead, you should pour yourself a strong cup of coffee, say a little prayer (you might need both), and head on over to This Woman’s Work where Dawn writes tirelessly and honestly and personally about adoption. One of several reasons I don’t write about adoption much is that Dawn does it so damn well, and I have little to add. But it’s probably not fair to sit back and let Dawn do all the heavy hitting, and maybe I do have a few things of my own to say. So here I go, dipping my toes in….
The central paradox of adoption, it seems to me, is that it is a joyful and awesome thing that happens, by definition, in a context of profound loss and sorrow. But this alone does not make it problematic; indeed, much of life, it seems to me, is like that. Perhaps slightly more problematic is that the joy and awesomeness on the one hand, and the loss and sorrow, on the other, are pretty lop-sided: adoptive parents get most of the former, first parents get mostly the latter, and adoptive children are stuck in the middle trying to synthesize the two. But even this does not seem to me intrinsically problematic, especially if everyone is doing their work with honesty and integrity.
By which I mean that adoptive parents owe it to themselves and their children to lift up and celebrate the profound and beautiful experience of creating a family through adoption, because it IS beautiful and profound. There is something just extravagantly hopeful and glorious and absurdly against-the-odds about forging bonds that usually begin with DNA, but, as it turns out, don’t have to. But this is only part of the story, and it’s a story that easily sinks into sentimentality and, ultimately, heartbreak, if it can’t exist along side the other story, the story of what was first lost, which is also profound and real and beautiful. Adoptive parents also have an obligation to make room for that other story, and to let it be part of their family’s story, and to give their children tools for coping with that loss.
Likewise, first parents owe it to themselves and their children to, as best they can, find ways to heal their broken hearts and celebrate the families they have helped their children become part of. Under the best of circumstances, in an open adoption, first parents remain part of those families. And if all the grown-ups are doing their work as best they can given the resources they have available to them – in other words, if everyone is doing their work with integrity -- it seems to me that adoption becomes just one of life’s many crucibles, and that it is at least possible for everyone to come out whole on the other side.
I guess what I’m saying is this: adoption is full of joy, and it’s full of pain, and the joy and the pain are not evenly distributed, and that sucks, but none of that, it seems to me, makes adoption intrinsically problematic. That’s just life: it’s full of joy and it’s full of pain, and the joy and the pain are not evenly distributed, and we all have to do the best we can, with honesty and integrity, to, well, do the best we can. And some of us will get wounded along the way even so, and some of us will come out relatively unscathed, and life is just like that.
No, it’s not pain and sorrow and grief that make adoption problematic, it’s that the pain and the sorrow and the grief are all-too-often the result of coercion.
Now, some folks will argue that adoption is, by its very definition, coercive, and that I’m just splitting hairs, but I actually can imagine a scenario in which a first mother truly and freely chooses adoption for her child. It seems to me that it is patronizing and offensive to say that no woman with real agency would ever choose to place her baby for adoption. It strikes me that insisting otherwise is to insist that there is no better life for all women who find themselves pregnant than to raise children, which, it strikes me, is simply absurd. Not all women are meant to raise children, and certainly even women who are meant to raise children are not always meant to raise them at the moment they find themselves pregnant, and while the choice to place a baby for adoption will most likely have serious and life-long implications for any woman faced with that choice, implications she is probably incapable of fully understanding at that moment, nonetheless, to suggest that she should not have adoption as an option as she tries to make the best choice for herself and her baby in that moment …. well, I find that problematic. I believe strongly that adoption free of coercion, just like abortion free of coercion, should be one choice among many for any woman faced with a crisis pregnancy.
But there’s the rub: adoption free of coercion? That, it seems to me, is a rare thing indeed. There’s so much coercion in adoption, and so many others, especially first mothers, have written so much more knowledgeably and eloquently about that than I can. So I just want to think for a little bit specifically about the coercion of poverty. Dawn has suggested, wisely (as always), that a first step to getting coercion out of adoption is to get the money out of the equation, and certainly I agree that if money were less a part of the actual transactions that result in adoption, that would be A Good Thing. I’m not an adoption reform activist, and I can’t promise that I’m going to become one any time soon, but I will certainly throw my voice and my prayers and even my money behind the good folks who are doing this important work.
The problem, though, as I see it, is that even if those good folks are successful and we get the money out of adoption transactions … it still seems to me that whenever poverty is part of the adoption equation, there’s going to be coercion involved. Because poverty is intrinsically coercive. One of my pet peeves is people who claim to be living lives of “voluntary poverty” because one of the hallmarks of poverty is that it’s sticky and profoundly restrictive. Intrinsically involuntary. If you can chose poverty, then you can un-choose it, which means that it’s not really poverty in the first place.
Real poverty? No one chooses that. Because let’s be clear, poverty is ugly and brutal and violent and soul-squashing. And it is not good for children, not good at all. Does this mean that children living in poverty would always be better off living with affluent families? Of course not, because many, many parents living in poverty are able, against so many odds, to be good parents (also, it’s because affluence can be likewise ugly and brutal and violent and soul-squashing, but that’s another rant altogether). But does it mean that some children born into poverty would be better off adopted by more affluent families? Yes, I do believe so.
Of course the best solution would be to end poverty. Of course. Then the coercion of poverty could be totally taken out of the adoption equation. And working to end brutalizing poverty is at the heart of my faith and informs all of my life-style and political choices (so maybe I am an adoption advocate?) But, you know, good luck with that and all, right? Even Jesus said the poor will always be with us, and while I try to do my part, I’m sure not holding my breath. In the meantime, there are families right here, right now, in this “mean time,” families who are stuck in poverty, and the only choices they have are choices that are overshadowed by poverty’s inherent coercion. That’s just the reality of their lives. To suggest that their children are always better off with them is to romanticize poverty and to patronize them. When poverty is your context, often the only choices you have are the best among a lot of bad options. When poverty’s coercion pervades your life, the amount of agency left to you is really small, but it’s what you have, and to exercise it is to exercise the only power you have. To take away that power in the interests of eliminating coercion is itself coercive. That’s what I mean about poverty: coercion is just the sea you swim in. There is no being free from it, there is just doing the best you can to stay afloat. For some women living in poverty, the best choice they can make for their children is to place them for adoption.
There’s so much coercion in adoption, and adoptive parents are responsible for a lot of it. We who adopt have an awesome responsibility to speak out, as Dawn says, to use our privileged place in the adoption triad as a bully pulpit for those who are structurally less powerful. I believe that, and I thank Dawn for being so relentless in reminding me of it.
But the coercion in adoption that stems from poverty? All of us, all of us who don’t live in poverty, aren’t we all party to that? Aren’t we all responsible for that? Well, that's probably a whole other debate, but as for me, I'm pretty sure when it comes to poverty, pretty much we're all implicated (present company most certainly included).
Poverty is one of the hardest things for me to write about. I have tried and failed, tried and failed, over and over and over for several years now. It is one of the reasons I stopped blogging at my first blog, the wide tent – it was time to write honestly about poverty and race, but I just didn’t have it in me. And I’m not sure I do even now. As I read back over this piece, I’m not happy at all – this is exactly the sort of writing I go out of my way these days to avoid: argumentative, righteous, entirely lacking in personal narrative. But to write well – to be vulnerable enough to tell the truth as I live it about poverty and race, much less poverty and race and adoption – I still haven’t figured out how to do that. So I leave you here with this, the best I could do with the resources I have at hand right now.
And really, you should go on over to This Woman’s Work because she’s just fearless.
Monday, October 19, 2009
The Cost and Joy of Discipleship: My Resurrection "Problem"
Is it just me, or do you have conversations in your head too? I do this all the time, “talk” to people in my head about all sorts of things. When I’m thinking something through, I guess I need an audience, even if it’s just an imaginary one. That’s the reason I started this blog, really: I love to write, I need to write, but I could never make myself do it just for me, in a journal. But I also have never felt that fire in my belly to get published. Oh, it would be nice, I’m sure, and if someone out of the blue asked me to submit something to a magazine, or offered me a book contract, I would surely say “Yes!” and be thrilled. But that’s not how it happens, and I have never had the stomach for the sort of self-promotion and marketing it takes to be a successful writer. Still, I need to write, and a blog seemed like a way to gather around me a little bit of an audience to make me actually get words on a page now and then. (And as it turns out you, my dear little group of readers, are everything I need and I totally adore you, by the way!)
My friend Gordon says that reading, like writing, is communal, that we always read with someone, even if they don’t know that we are reading with them. I never thought about it that way, but instantly I knew what he meant – I’m always reading with someone or other, a friend who loves this author, or someone who reminds me of a character in the book I’m reading, or a loved one who has sewn themes into my life related to the themes in the book I’m reading. Since I joined Gordon’s book review group, affectionately know as the “Booksters,” I now read just about everything with Gordon, in addition to the other folks I’m reading “with,” because I know at the end of my book I will write a review for him. I love that, having him and all those other folks with me as I read.
My solitude is much like that, very much animated by souls who don’t even know they are with me. As an introvert, I need solitude to stay healthy and whole, but I’m also really a relationship-hound. I love people. I just adore them. I treasure relationships and crave intimacy and am promiscuously affectionate. And though I need to be alone a lot, I find that even in my solitude, I gather my dear ones around me in the form of imaginary conversations. I carry on conversations in my head with just about anybody, whether I’ve met them or not. I can “talk” to my loved ones, of course, but also to authors of books I’m reading, famous people I admire, “friends” on Facebook whom I’ve never even met – it’s how I flesh out ideas, ideas that often make their way here in written form, ideas that are influenced along the way by books I’m reading – it’s all very dynamic, my reading, talking, and writing. (Of course in my imaginary conversations, I’m always incredibly articulate and wise and quite attractively clever and witty, so maybe they also serve a therapeutic purpose, to perk me up when I’m down!)
At any rate, what I realized recently is that I don’t “talk” to people who aren’t alive. My imaginary conversations are really rehearsals, fantasy conversations that I’m imagining, at least theoretically, could really happen. I realized this recently when I was thinking (having a conversation, actually, in my head with someone I don’t even really know) about why prayer is so hard for me. The prayer that works best for me is liturgical, praying the Psalms, even praying the Rosary (though I pray it in a very modified way that would probably horrify orthodox Catholics … though just the thought of me praying the Rosary in any way would probably horrify orthodox Catholics, now that I think about it, so what are you going to do?) But I’m terribly undisciplined about any of that, which, combined with my complete inability to pray meaningful in a “talking to God” sort of way, leaves me without the rich prayer life that I really crave. Okay, so yes, I could just get some discipline about the sort of prayer life that actually does work for me (why is it so hard to just pray the Psalms every freakin day, when I love them so much? Go figure.). But still, this “talking to God” sort of prayer is fascinating to me, but ultimately elusive. Entirely elusive. Which doesn’t really make sense, right, if I’m all about imaginary conversations with folks.
Yesterday after church a small group of us gathered over lunch (broccoli and cheddar quiche made by yours truly and a lovely fall salad from Jane) in the parsonage to brainstorm topics for the adult Sunday school series, and George suggested a series called something like, “What’s Jesus Got to Do With It?” He speculated that there are some folks outside the church who are maybe craving something we have, but can’t quite get themselves to join us because while they sort of get God, they’re just not sure what Jesus adds. What’s he got to do with it anyway? I thought that was interesting, because for me, it’s just the opposite: I’m all about Jesus. Truth be told, I’m kind of crazy about Jesus. But God? I really, honestly can’t wrap my mind around God. No, that’s not right -- I can wrap my mind around God, and I really do believe in and experience God, all the time. But the problem is, I can’t wrap my arms around God – I can’t animate God enough to give God personality and the sort of presence that I can be in relationship with, that I can talk to. So when people try to reassure me that really, prayer is easy! It’s just talking to God! That doesn’t help. Not even a little.
But if you have been reading me even for a little while, you know that Incarnation is central to my faith. I just really love the notion that in Jesus, God shares God’s Godness (I was going to say Self, but like I said, I can’t really imagine God as having a Self) with us all in such a physical, earthy, intimate, bodily way. If you’re a relationship-hound like me, who loves the way we can touch one another not just with our heads and our hearts but literally by touching each other, holding hands, kissing and laughing and laying our hands on one another in gestures of love and healing – if you love all that, well then, Jesus is your boy, right? And eating! Have you ever noticed how central eating is to our Incarnational faith? That’s because bodies need to eat, and it is sacred and good to eat together. It’s no accident that Jesus left us with a meal to recreate himself among us. It’s no accident that Jesus revealed himself in Emmaus through the breaking of bread. So, yeah, I’m all about the Incarnation. (I should note here that none of this about the centrality of bodies and food to faith – not one single bit of it – is unique to Christianity; I just happen to be Christian so that’s the tradition out of which I write.)
So the other day, as I was driving past the Art Museum on my way home from a meeting at church, I was thinking about prayer and why it is so hard for me (okay, again, I was actually having a conversation with one of you! In my head…. all the time, I’m telling you, these conversations are going on in my head). I thought, okay, it makes sense that I can’t “talk” to God, but why can’t I “talk” to Jesus? If Incarnation is really so central to my faith, and I’ve got this man, Jesus, whom I adore, and he’s perfectly embodying God, then why can’t I “talk” to him? At first I worried that I had an Incarnation problem, which would be a real crisis of faith, let me tell you. And then I realized what it was: I don’t talk to dead people. I don’t “talk” to my mom, much as I wish I could, and I don’t “talk” to Thomas Merton, even though I call him my patron saint. I don’t talk to historical figures, and, as I realized winding my way past boat house row, I don’t talk to Jesus. At least not unselfconsciously, not in the way that I can lose myself in imaginary conversations with people who are alive.
I realized then, on Kelly Drive, that my problem with prayer is not an Incarnation problem, but a Resurrection problem. And I will admit that I realized this with some relief. Not because Resurrection is not central to my faith: it is, actually. But, I will confess, I don’t “believe in the resurrection of the body,” much as I love to say the Apostles Creed, and I don’t “look for the resurrection of the dead” even though I love saying the Nicene Creed. I believe in, and experience, the Resurrection of Christ all the time, every day, but not in a way that manifests one body, in the person of Jesus, who is alive in a way that I can “talk” to.
Last night another group of folks from church met for dinner at Bob and Joanna’s house. (I brought salad this time, and there was also chili and baked lentils and awesome chocolate chip-raisin muffins for dessert; and always, with that bunch, good wine and beer). We were there as part of our covenant ministry with Michael, with whom we are embarking on a period of revitalization during which we hope to share our good news with others who need it and are seeking it, but aren’t sure where to find it. Michael asked us a series of questions and we shared around the living room, a wacky diverse group of folks. Among the questions Michael asked us was, What is a central way that we as a church experience Jesus? The discussion was thoughtful and moving and just lovely. Dorothy told the story of coming to the United States as a refugee from Liberia, and against all odds finding a church home with us. Laura told of how difficult for her is Jesus’ challenge that we must become like children to enter the Kingdom, yet when a pack of kids, led by Micah and Meg, randomly and very noisily flew through our discussion, there he was for her. Joe, a long-time UCC pastor, spoke of meeting Jesus in Buddhist practices such as meditation, and Bob spoke of meeting Jesus in the homeless men he works with at our food and clothing cupboard. Bobbie noted that because of her work in the HIV/AIDS community, she could only join her husband’s church after we became Open and Affirming, because acceptance of gay and lesbian people was so central to her experience of Christ. And on and on, one gorgeous story after another.
I was sitting in a chair, with Michael on the floor next to me on one side, and Dorothy in a chair on the other, and for a brief moment I had one of those “movie” experiences – you know, when there’s a sequence in a film where the music rises over the dialogue, and usually the camera does something clever, like zooms out or spins round the circle, and you are meant to experience with the character a transcendent moment? That’s what it was for a moment: pure transcendence. I resisted an urge to reach down and take Michael’s hand, to reach over and put my other hand on Dorothy’s back. And I looked around, as the camera would, not really hearing the sounds of voices for a moment, but seeing these faces of all these people that I just love so very much. And they were shining, I’m telling you. Transfigured. And I actually thought right then about all the petty ways that we can be annoying to one another, and let each other down, and be, well, human, you know? I was acutely aware of that, that these were human people, with very real human foibles, many of which I am well aware, having loved them and struggled in community with them now for over a decade. But in that moment they were all shining and perfect and utterly beautiful. And I thought this! This is it, this is the Body of Christ, this is the Resurrection: all these people I’m talking to all the time in my head.
And I realized then that maybe I don’t have a Resurrection problem at all. And maybe, just maybe, all those conversations I have in my head with all of you, my dearest ones, maybe those conversations are my prayer?
continuing the conversation: on bodies
In many ways, I think approaching an understanding of ourselves and the world through an appreciation of the truth of oneness is a pretty good general description of religion. But there I go: separating myself from the world, if only syntactically.
I came to an appreciation of my own body rather late, not until I was an adult, and then I started exploiting it like mad, especially with regard to theatre and circus work. I still suffer from that strange subjectivity that makes us see abundant flaws and often blinds us to the glorious beauty of this corporeal form, but I try to counsel myself with this mantra: It's not about how you look, but what you can do. I realize even this idea will be tested by aging and may not hold for the rest of my bodily rental; still, I find a lot of understanding through it. We are not only our bodies and our souls or intellect, but also our actions. Energy. It's a lifetime of dancing, really -- some of it's just more choreographed than the rest.
I really should be kinder to it. After all, it's hardly my body that says, "Oh, wouldn't you rather sit around and eat fatty foods instead of going out there and getting some exercise?", is it? Thanks for that.
There IS lots in this post to think and write and talk about, so my response is necessarily incomplete, but I'm quite grateful for the thoughts you put in my head...and to our mutual PAL for sending me back to drink of your blog cup again! I really mustFavorite you this time.
I just love the way you think when you imagine Jesus. He sounds a lot like the guy I've thought he was, too. : )
(PS: My faithful, under-valued bod wants to know why we enjoyed yogurt and dry cereal while reading about you and your cheese steaks. I tried to explain you just put that in there for local color.)
Sara: *What's my body dooooo - oh my goodness, why do you think I skate?? I used to run - I wasn't fast by any stretch of the imagination, and in large part it was my big dissertation avoidance tactic. I highly recommend training for and running a marathon or two as dissertation avoidance. Highly effective, highly self-rewarding, and highly conducive to letting ideas gel and percolate in your head. Skating is different though - it's like there's an endless amount of "skill" to be learned - I work and struggle and expend huge amounts of effort at mastering something, and once I do, poof, there's something new to figure out. My body does that. With a little help from my brain, but really, it's my body. Isn't it awesome?
Sara: *and eating. I resist *utterly* the massive efforts women (and some men) exert for virtually their entire lives (except perhaps for the pre-puberty years) on restricting their food intake. It drives me insane and it's really rather sad. I eat. Pretty much whatever I want to eat. Beyond the point of satiety often, but not b/c I like to feel uncomfortable, but b/c a little extra of something yummy - is just so yummy.
Sara: *the juxtaposition of skating and that food thing? Really rather wild at times. Few and far between are the skaters who totally love food and go at it with abandon.
*CP. See this: http://www.democratandchronicle.com/article/20090929/SPORTS/909290334/1007/SPORTS/Rochester+Rookies+sport+a++can+do++spirit
LOVE love love the "I can do anything" thing. I can't promise that Toby won't have a level of grief (?) about his body's shortcomings. There are times that are incredibly frustrating, and there are times where I just wish some things were easier for him. But all in all? He's very comfortable in his own skin. He prefers to crawl around the house? So what as far as he's concerned. It works. And the biggest irk I have in interacting with the General Public (of the variety where I'm actually conversating with them - not random folks I'm not interacting with) is when they get stuck on the label of CP and presumed limitations, rather than focusing all the awesomeness that is Toby. Like we're advocating like the dickens these days for a wheelchair for Toby - precisely b/c it'll *open* up stuff for him - but what folks see? Is that it's a limitation. Really, in the end only he can tell his body story - but so far? I don't sense a lot of loss/limitation about it in his head. He does notice difference - but it's not a grieving thing for him largely. He is frustrated at not being able to participate in some stuff (gym at school? Kids run away and he with his walker just can't keep up. See back to the wheelchair note...). But it's not negatively directed at his body.
Sara: Mostly - I would adore having this conversation with the lot of folks commenting here - can we set up a bulletin board like the old Parents Place ? !