I used to argue the point with my father that “why should we consider him different” than us? If we truly believed that the disabilities were temporal in nature, why should we label him different. I used to get infuriated at my dad’s pragmatic response, that “it doesn’t no good to split hairs — he’s different from the norm, so he carries the label”. But no matter what my father may or may not have said, publicly — his actions belied his words. My brother *was* a part of the family — and he wasn’t considered second class. He went on every vacation with us (save one, and my father still regrets it, even though it was really the best decision), went camping, etc. (OK, we didn’t take him to movies).

So anyways … to my father, it didn’t matter what words were used, it was still his son and that didn’t change his perspective. Being a scientist, he opted on the side of what he considered to be clinical correctness. But his heart and his love and his actions were pure.

I see M’s future as being intimately bound up with the planet’s future. That’s not just because, through some strange turn of events, she happened to be born on Earth Day. But because I see no clear boundary between the behavior we display toward the planet and the behavior we engage in amongst ourselves. That’s why I’m not a big fan of movements like “reduce global warming.” As a cause in itself, it’s itself hopelessly exploitative.

Why? Because while we’re raising consciousness to reduce greenhouse emissions, etc., we’re busily strip-mining, overgrazing, contaminating, and scrambling to get gain on all remaining fronts. I might be able to accept movements like this one as the barest stirrings of awareness of our human responsibility. But as a genuine effort to turn some tide, it’s hopeless. If we are to make any meaningful change in the condition of the planet and our own well being in regard to it, we must change the way we behave overall, starting with how we act toward our own kind.

M came into the world pre-exploited. A clever virus that knows how to exploit human interaction as we currently engage in it mined out her central nervous system when she was most vulnerable. After she was born, she suffered further opportunistic behavior at the hands of people who capitalized on her condition. I see little distinction between the viral behavior that did her the primary injury and the viral behavior that capitalized on it afterwards. Nor do I see the difference between the treatment M received and the treatment we deal out to other species and elements of the Creation. As far as I can tell, the two greatest commandments remain the best environmental policy. And we must take care not to render that “love thy neighbor as thyself” phrase into some other opportunity. It means something like, “love and care for the ‘not you’ as if he or she – or it – belonged among you, as if he or she were one of you.”

My “neighbors” include actual, physical neighbors who live within shootin’ distance of me and all other human beings I might come into contact with under circumstances bearing greater and lesser degrees of intensity and responsibility. Spiritual and phychical energy – behavior – expended in one place travels to other places, just as if it were a chemical leached into the soil and waterways where its peregrinations may affect a broad interdependency of human conditions.

My “neighbors” include the hummingbirds that come to my back porch and allow us in among them, and the cliff swallows, who are equally inclusive of humans who are interested, and the eagles, who sometimes condescend to fly below me so that I might see the glint in their eye and the inspiration of their genius with flight. It includes the tomato seedling who intimated consciousness in a way that made it possible for me to perceive delicate movements of life in M that were open to encouragement. It includes the dogs who have taken up with us, and who provided me insight into how to solve one of the most serious problems M encountered during her early years.

Heh, I could go on. Later, I guess.

Thanks, all, for your generosity and interest during what for me has been a very intense involvement in this series. I’m feel I’m a different person from when this began. I’m grateful for that. I’m especially grateful for the living environment we call human language, for the ground it provides for gathering, for its teeming potential for creativity and productivity.

If by “heard of it” you mean been presented with this option by our physicians, we haven’t. Nor have we inquired about it. I don’t know much except what I heard in the news, and the news doesn’t really tell us anything meaningful.

So, I don’t know enough about it to give an informed response. What I can say is that I imagine that performing such a procedure is better than euthanizing the child. I can also say I have misgivings about surgically altering another person for my convenience alone and for others’ convenience. If there were some health aspect to the question, I’d still consider carefully and try to find another way, one that doesn’t narrow the child’s human agency as such a procedure might do, given all the ways the human body tries to pursue life and create options on its own. We don’t understand all the means and ways and often interfere with them.

Also, I understand the pressure outside influences, professional or other invested influences, put on a family to take the “only viable” way. It’s a tough pressure to resist, because these people have money and wield authority. It’s their job to get you to do stuff. The language involved sometimes is both convoluted and end-stopped. People don’t know how to work their way through the language to find out what other possibilities exist. They don’t know how to create their own possibilities.

It’s a labyrinth. There are twisted kings and minotaurs. The scope of effort required to make your way through is archetypal and epic. Who does “epic” anymore? If you attempt it, you’re unlikely to make a perfect run. Even in during a decent run you’re likely to lose something along the way. Some of that will be stuff that was actually good to lose. Other things go up in smoke in straight-up sacrifices.

Still, that human agency question — it lies beneath everything. What are you willing to take responsibility for? What can you see in yourself that you need to repent of? What luxuries of ignorance are you willing to jettison to make it past or through some obstacle? People have to weigh all these questions and more all the time.

I say, thank you, God, for the atonement.

This is gorgeous! Makes me wonder, how many of these people have adopted the kind of resignation toward family and folks in charge of them that some of us others have toward people who can’t understand our strange and difficult positions? That is, some of us in the comments above, myself included, have admitted to falling back on silence or ironic response (saying “I’m fine,” when we’re not, etc.) to avoid the time-consuming conversations that change nothing, the confrontations that draw off energy required for truly urgent need, the unknowing remarks that leave us wanting. How many of these “incredibly intelligent” people have done the same and, like some of us parents, just taken matters into our own hands in whatever ways we can manage?

Our pediatric physical therapist Dave, who spent most of his life helping kids in seemingly unhelpable situations, wrote poetry. One of the poems was titled, “Just Like You.” It was a poem written from a “disabled” child’s point of view that described how the child wanted all the things a “normal” child wanted and felt all the things a “normal” child felt.

Really, maybe we all need more, want more, feel more than we know what to do with.

What surprised me most about the people I worked with, coming to the job as I did with a lot of preconceptions, was how incredibly _intelligent_ they were. There’s just no other word for it; it was pure, raw intelligence. For instance, one woman who both my husband and I knew was an absolute genius at outwitting her dietary restrictions, waiting until we staff were looking the other way and then getting precisely what she wanted with lightning speed and calculation. Her social intelligence was way ahead of mine. There are many other examples I could give, but I left that job with a sense that as a culture that strings people out on a bell curve with “gifted” at one end and “mentally retarded” at the other we haven’t even begun to think about or understand the intelligence of the people I worked with. The intelligence was there, palpably. We poor fools just hadn’t figured out how to make sense of it in our limited terms.

You probably know this as well as I do, but one of the odd things about life with an extremely high needs child is how you not only have to let go of your expectations for how you imagined life would be but also you have to let go of other peoples’ expectations for how they imagine your life should be. It’s the humane, sanity-saving thing to do.

I have to keep learning this lesson myself because I want to be involved with groups and causes that interest me. I join and things start going well and I’m engaged in some interesting, even exciting work, and then M has a prolonged crisis that requires all my time and focus and renders me dead to the rest of the world. Our social consciences say, “Oh man, I’m such a flake.” But our instincts say, “I’m doing the best thing, the right thing.”

After 16 frightening, unbelievable, remarkable, barely endurable years, I think I’m coming to the conclusion that putting expectations on others to understand and approve what I’m doing is putting expectations on them they can’t possibly meet. So in spite of my justifiable need for approval and understanding, I’m probably behaving uncharitably in pressing those expectations on them.

But there are those few people who understand completely and are there — those are the ones I’m learning to depend on. My friend whose son had Fanconi aplastic aenemia — she has been there for me through it all, loving, helping, guiding. My old neighbor back in Utah Valley — a dream neighbor! Always completely supportive, always a good friend. Seeing our need, he packed some of our junk himself and insisted on driving the 500 mi. round trip to help us move down to where we are now. When I go up to Utah Valley and stop in to see him, nothing but positive energy and good regard flows from him. It astounds and uplifts me. My old friend and roommate who is like a sister to me. My sister, who is a sister to me. So on and so forth. All these relationships are over 10 years old. I think that’s how long it takes to establish these kind of sustainable, renewable relationships.

They help me find balance so I can go in peace among the others.

Doesn’t offend me, as long as all of civilization is willing to own the term “mentally retarded” rather than put centuries of prejudice and failure to reach these children and adults wholly upon their already burdened shoulders. I’ll own it, though I prefer the label “developmentally delayed.” It’s the alliterative “d” and “l” and that long “e” assonance that does it for me. “Mentally retarded” — ugh! — what a clunker of a phrase! :)

Seriously, what are we really doing when we apply rhetoric like this? Not that you’ve done it, queno, I understand your point. But I’m interested in the question, because phrases like “mentally retarded” and “developmentally delayed” seem to me actually to be pretty bits of projection. “My ability to help you falls short of what you need; therefore, you’re retarded”!?!? I can’t figure out how to reach you, teach you, give you options; therefore, you’re developmentally delayed”!?!? We’d progress faster as a culture and truly, deeply help people like M if we’d just matter-of-factly own up to our lack of understanding, roll up our sleeves, reach down deep inside ourselves, and them, and get creative. Furthermore, what we’d learn from these kids would prove broadly applicable.

I’ve said elsewhere that these children give us tremendous opportunity to make great advances in brain science, medicine, and human development and relations. Having M in our lives has been hard, but it’s also been a tremendous adventure. There’s so much more about M I could tell to back all these assertions up because this is a big, vast, deep story. Kathryn S’s story with her Down child is so big she has to put what she’s learned and felt and wants to say into more than one book! People are missing out, aren’t they, Kathryn?

But I’ve probably pushed it about as far as I can for a blog.