Bittersweet Sixteen: Part Three

April 27, 2008 | 43 comments
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Like many people dependent upon care from others, M can be a tyrant. For instance, sensing my anxiousness during her feedings, when it’s crucial to get enough into her to sustain her plus stimulate her slow growth curve, she’s begun extorting favors. Sometimes she’ll demand to watch her favorite video over and over or else she won’t eat. She wrings the last drop of pleasure out of these viewings then collapses back into boredom. Then she grows irritable and stops eating again. Do something to entertain me, she pouts, or I’ll starve myself.

This behavior wasn’t possible during her early years, when, being in perfect need, she had full right to everyone’s best resources. Not only our best – she had license to pull from us more than we had. She didn’t exert this right because she didn’t understand she had it. The responsibility not just to answer the call but also to perceive it in the first place was ours. Routinely, she took us to the edges of who we were. Finding the nerve to jump was our problem.

Now she’s learned enough to play tricks of control. Dire need is innocent and entitled; manipulation is accountable and arguable.

By the church’s standards, M is forever innocent. She needn’t make baptismal covenants to keep God’s commandments or take on God’s name in any of the usual rituals of devotion. In fact, for her, baptism is a physical impossibility. Immersion in a baptismal font would terrify her and put her in danger. Her salvation, we’ve been told, is not dependent upon the usual duties of belief or keys of authority. At a meeting where our bishop interviewed us on our expectations regarding baptism for M, he put it this way: A “veggie” like M is not accountable. Yep. He said “veggie.”

All the same, I’ve relied heavily on M’s spark of human agency to help her get as far as she’s come. In those early years, I tried putting choices to her in as many ways as I could think of, choices of life against death, awareness against unawareness. Somehow, in spite of my inadequacies, she made something of the relationship that rose between us.

Now, as her primary disciplinarian, I’m introducing very basic principles of personal responsibility. My dear, A is not working, not for you, not for us. You’re treating A as if it were your only choice. I’m going to begin teaching you it’s not. From now on, if you do A, B will happen. If you stop eating in an act of brattiness, you go into the bedroom where you can have your tantrum till you can think of something better than that to do.

In the meantime, as she outgrows old toys, videos, activities, and her Calvin and Hobbes library, we’ll try to find new activities, music, and reading material to relieve the boredom that accompanies the development of her mind . Eventually, she should learn to create her own arrays of choices and develop some skill to choose more wisely than she does now. Why do we do this? To help her magnify her intelligence. We don’t believe that because she’s not accountable it follows that she’s incapable of progression. I’ll let you know how it goes.

In the past, I liked to think that I’d have learned what I’ve learned from all this without M having to have suffered so deeply for my foolishness. My husband says he thinks I would have, because he says I go looking for … whatever’s out there.

But I’m not so sure. Given all the creature comforts my unknowingness afforded, I can’t say for certain I’d have budged off its Corinthian leather sofa for anything less than my child’s desperate need. Furthermore, if the devil, in an Especially for Mormons moment, gave me a choice between having greater insight into the condition of mankind or a daughter able to win privileges of physical and mental maturity, I might just opt to keep the ignorance. I say “the devil,” because the devil is the father of false dilemmas. God is more generous than that.

One thing I almost certainly wouldn’t have learned had not M suffered an attack from cytomegalovirus: how intimately, inextricably involved we all are. The “It’s my body, I’ll do with it what I please, I’m not hurting anyone” spiel doesn’t fly for us anymore. We now subscribe to “No man is an island,” set on fire.

Not only are we humans intimately bound one to another, but also we’re deeply entangled with the natural – that is, the non-human – world, including microorganisms, many of which are as focused as raccoons or coyotes are in their clever opportunism. Thus they thrive wherever there is human concourse. We suffered our attack from the “natural” world via a human vector, further evidence we’re not as far above or separate from nature as we imagine. But beside that, I’ve been surprised to find I could rely upon other intelligence than human and divine intelligence to address some of the finer aspects of M’s care. Plants and animals showed me – still show me – aspects of consciousness and relation that help me make the connections with M that we both need.

Still, I wander amazed through the treasure room of my not knowingness. After having been smacked up aside the head with its consequences during that pregnancy over 16 years ago, I’ve been shoveling the clumsy, gaudy stuff out the door as fast as I can. But I swear it multiplies even as I’m reducing it: three shovels full out, two more in. Or is it two out, three in? Hard to tell. Could be both!

It is one of those strangely mixed blessings that M’s suffering jump-started me after a period of indolence. This is not to say I think suffering is the only or best catalyst for progress. Not sure who said this – Joseph Addison or Anne Lindbergh – both get credit for it – but whichever said it, I agree: “I do not believe that sheer suffering teaches. If suffering alone taught, all the world would be wise, since everybody suffers. To suffering must be added mourning, understanding, patience, love, openness and the willingness to remain vulnerable.”

Of all the holy traits capable of competing against the boundless wealth of ignorance, I think the extravagance of love might be most equal to the task. There is something about love that leads us past those places ignorance does not wish to look at. Ignorance abhors a mystery; love is drawn to it, be it the mystery of a child’s illness or of God’s passion for us. For all its luxury, unknowingness mounts debt. Love creates surplus. A few fish become enough to feed a crowd with some left over, five talents become ten.

Paul’s letter to the Ephesians, Chapter 3, contains an interesting phrase about the love of Christ: “And to know the love of Christ, which passeth knowledge, that ye might be filled with all the fulness of God (3:19).” Typically, we interpret the phrase “the love of Christ” to contain triplets of meaning. “The love of Christ” can mean Christ’s love for us. “The love of Christ” can mean our love for Christ. It can also mean “Christ-like love” that people may bear each other.

But it’s the phrase “which passeth knowledge” that snags my attention. The chapter heading rephrases the clause into the familiar, “The love of Christ passeth all understanding.” Many people, I think, interpret this to mean something like, “The nature and power of the love of Christ lie beyond our comprehension.”

However, in this verse, I wonder if “passeth” might signify transference rather than exceptionality. That is, the love of Christ passes knowledge to us or transports us beyond our knowledge. This passing of knowledge or transporting us beyond our knowledge happens so we “might be filled with all the fulness of God.” Also, in the verses preceeding vs. 19, Paul tells us that the cause he bows his knee to God for is that “…ye, being rooted and grounded in love, may be able to comprehend with all the saints what is the breadth, and length, and depth, and height …”

Any or all of the triplets will work in the phrase under consideration. But playing with just the King’s English here, I especially like the idea that the Christ-like love we may bear each other transfers knowledge to us and/or takes us over the ledge of what we know (haha, know-ledge). Or that such love edges us on to or past the knowl (OE spelling of knoll, a small hill that rises above the landscape, or the summit of said small hill).

Christ’s love for us and the Christ-like love we strive to show each other, the “fellowship of the mystery,” takes us over the ledge of what we know to the breadth, and length, and depth, and height. Of what? “The unsearchable riches of Christ,” of which Paul preaches. The mystery of “principalities and powers in heavenly places.”

M’s world is a teeming interface with “the mystery.” Driven by love (and mourning, and openness, and vulnerability, but if I have these but not love, I have nothing), I went to the ledge of what I know, which was something but not enough. Love — the bottomless desire of a mother for her daughter — compelled me onward. There seemed no other way: I took the plunge. But instead of hitting bottom, I found myself in a heavenly place, up to my neck in the firstlings of those unsearchable riches of Christ. Pawing through these, I rendered enough of my ignorance to clear some of the debt I incurred against M’s mortal potential during my luxurious life of unknowingness. That I ever believed my ignorance to be so valuable, so worth holding on to – that’s the mystery, now. That, and what God’s willing to give me for such worthless junk. Still, I’m kind of glad that I have so much of it. At the current exchange rate, I can keep going on it forever.

Me to M: “Hey, Baby! You want to come with me?

M to me: “Ah!” (M’s word of affirmative.)

Me to M: “Great! Let’s start by going out to the feeders and watching the hummingbirds. They have tiny brains but they’re really smart!”

M to me: “Ah!”

Me to M: “Okay, let’s go. Sing it with me.”

M and Me together:

Superman or Green Lantern ain’t got a-nothin on me.
I can make like a turtle and dive for your pearls in the sea, yeah!
A you-you-you can just sit there thinkin’ on your velvet throne
“Bout all the rainbows you can have for your own.
When you’ve made your mind up forever to be mine
I’ll pick up your hand and slowly blow your little mind.

When you’ve made your mind up forever to be mine
I’ll pick up your hand,
I’ll pick up your hand.

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43 Responses to Bittersweet Sixteen: Part Three

  1. Luisa on April 27, 2008 at 9:28 pm

    so many good points, where to start. I guess I’ll really touch on the ignorance thing. A couple years ago I went through a really hard time and I kept trying to understand why it was that I had to go through this and wishing I didn’t have to. After the fact we realize how much we learn but it hurts, oh, it hurts and I can’t say “I’m grateful” for the experience, (as so many people do) but it has opened my eyes in many ways and I feel that I’ve added depth to my character. So, as many times as I wished that I didn’t have to go through it, I have learned from it and developed through it.

  2. Luisa on April 27, 2008 at 9:30 pm

    sorry about the double comment.

  3. Patricia Karamesines on April 27, 2008 at 10:16 pm

    Fixed!

    Thanks, Luisa, for commenting. “I’m grateful” wouldn’t quite work for me, either, except I could say, “I’m grateful things have worked out as well as they have.” “I’m grateful we still have propects.” “I’m grateful redemption works every which way.”

  4. Patricia Karamesines on April 27, 2008 at 10:19 pm

    BTW, if anybody knows what’s going on with that Joseph Addison/Anne Lindbergh quote, I’d like to hear what you’ve got.

  5. Jim F. on April 27, 2008 at 11:12 pm

    Patricia, as always you remind us of who we are, who we are glad to be, blessed to be.

    Thank you.

  6. Julie M. Smith on April 27, 2008 at 11:36 pm

    “At a meeting where our bishop interviewed us on our expectations regarding baptism for M, he put it this way: A “veggie” like M is not accountable. Yep. He said “veggie.””

    The fact that you didn’t throttle him on the spot pretty much ensures your calling and election, I’d wager.

  7. JKS on April 28, 2008 at 1:06 am

    I feel like I am here to learn and progress. I am not content if I am not working hard on becoming a better me.
    I don’t buy the “suffer to learn” either. If you hadn’t had this “suffering” you would have been learning and growing and progressing in wonderful ways……….they just might not have been the same ways. And for me once I’ve learned something it is a part of who I am and I am not willing to unlearn it, I am unwilling to give up who I have become.

    Thank you for your posts.

  8. meems on April 28, 2008 at 2:51 am

    First, the first thought I had was something along the lines of Julie’s, above. I don’t know what I would have done in that bishop’s office except lose a little of testimony and questioned his authority over me.
    Second, thank you for these moving and humbling posts you have written.
    Third, I am truly brought to tears, in humility and sympathy, and I know I am unworthy to really be a mom in almost every way. I’m in awe of your courage and your compassion. Forgive the complete triteness, but you are a saint!

  9. StillConfused on April 28, 2008 at 11:20 am

    What would happen if you allowed her not to eat for a while? Is she capable of getting hungry enough to eventually eat?

  10. Patricia Karamesines on April 28, 2008 at 12:02 pm

    Jim F., Writing this had the unexpected effect of helping me to remember better. Surprisingly, it brought more peace to my house, deeper appreciation for the life we live.

    Julie and Meems: About that poor bishop. When he said that thing he said, my husband and I looked at each other, startled. We giggle at it now; perhaps we should have gone activist on him then, I don’t know. The bulk of our energy goes into the work we do to keep our house up and running; we try to pick our fights. I guess this series of posts is my response to his and similar remarks people have made over the years.

    Situations like ours take nearly everyone out to the limits of what they have language for. No doubt a few strange things squeaked out of my own mouth through it all.

    “I know I am unworthy to really be a mom in almost every way. I’m in awe of your courage and your compassion. Forgive the complete triteness, but you are a saint!”

    Meems, provoking comparisons in this way was not my intention at all. A lot of comparisons are bandied about that increase the distraction and tension in people’s lives, unnecessarily. One of the most unhelpful, confounding things people said to us during the hardest times of this whole trip was was that we weren’t doing enough, when they had no idea how much we were doing or how deeply we invested time and energy into every single every day. Often, what they meant was that we were not doing enough for them.

    I don’t wish those words or thoughts on anybody. Many parents do much more than they realize they’re doing.

  11. Lora on April 28, 2008 at 12:04 pm

    Thanks for this three parter. There are too many things to comment on, so ‘thanks for your willingness’ will have to be enough said.

  12. Patricia Karamesines on April 28, 2008 at 12:19 pm

    StillConfused: To a limited extent, that is what we do. But if she goes very long without eating, she’ll quickly become ill. Usually, she gets her tantrum out then is ready to sit down with me and take her meal. But if she goes too long, then I have to come up with some concessions. I take her outside for a few minutes, into the blustery spring winds (M’s idea of a roller coaster ride — it’s a big thrill and breaks up the tantrum and pacifies her). Or something like that.

    Also, we have to figure out what’s really going on. Is it a tantrum or is it a mix of a tantrum and pain? Is it pain only? (She often suffers pain when the weather changes, muscle cramps, and so on.) Is she ill? Is she feeling some other discomfort? Is she dissatisfied about something else that’s going on, that’s pushing her past her limits? Etc. Asking questions like these and then answering them to the best of our ability so that we can alleviate her discomfort or get her to the point where her needs can be met, is our foremost responsibility.

  13. Eve on April 28, 2008 at 12:47 pm

    Patricia, thanks for a great series. I’ve very much enjoyed your reflections.

    I have to confess that this comment left me a little confused:

    “One of the most unhelpful, confounding things people said to us during the hardest times of this whole trip was was that we weren’t doing enough, when they had no idea how much we were doing or how deeply we invested time and energy into every single every day. Often, what they meant was that we were not doing enough for them.”

    Not that I don’t believe people would make such remarks, but I’m trying to picture the context here and failing. Was the implication that you weren’t doing enough for your daughter? For your family as a whole? In your church callings? In your life in general? If you’d care to elaborate, I’d be interested in understanding this more completely.

  14. kevinf on April 28, 2008 at 2:01 pm

    Patricia, thank you for this series. I have found myself getting caught up in the intellectual issues of suffering and theodicy recently with my youngest son who is struggling with some issues, but your post reminds me that the challenges of the world we’re in are real, more real than we care to acknowledge. I’m going to share this with him, because you remind me that in the midst of our suffering, we find grace sufficient to help us overcome the hills we all have to climb. Yours may be steeper and with higher exposure than his, but each of us can get the strength we need to crest the summit.

    And don’t be too hard on your bishop. I’m guessing he went home, and pounded himself in the forehead for that particular comment.

  15. Patricia Karamesines on April 28, 2008 at 3:46 pm

    JKS, your comment strikes a chord. I feel similarly. I’m not inclined to come to peace about my ignorance. I’ve slipped into peace from time to time; it felt rather like sleeping in between silk sheets and missing a crucial appointment.

    I like better the feeling of making progress.

  16. Patricia Karamesines on April 28, 2008 at 4:58 pm

    Eve, I’ve taken a couple hours to think about how to respond to your question. To start, I think I’ll go back to what I said at the beginning of this series: These stories are unbelievable. Their unbelievability puts people’s charitable impulses in a bind. I have no examples to pose that aren’t complicated and personal. But let me try and let’s see what happens.

    First of all, M required intensive care at home. Among other problems, she had an uninhibited startle reflex and would startle repeatedly, and I mean over and over and over again, to the same sound or to series of different sounds. Sometimes these episodes resulted in her suffering very intense panic attacks (though it might have been something worse) that took her days to settle out from. So we kept her home where she was safe and where we could deal with any problems that arose without the complications of dealing with them in unpredicable public arenas. We didn’t attend family events and we didn’t attend church as often as some people thought we ought to. We still don’t. We didn’t have people over because it frequently caused trouble. We still don’t do that, either. Family members and neighbors were sure we were shirking or being antisocial. Some attacked us outright. Others were more subtle. I learned to thank people who said, “It’s nice to see you finally coming out again.”

    Most people don’t know what an uninhibited startle reflex is or how taxing it is on a person who suffers from it. On this count alone, how could they make sense of our situation?

    Even harder to wrap your mind around: When M and I were judged to have suffered a CMV infection, our healthcare providers, which included our pediatrician, my midwives, and our PT Dave, told me that some CMV babies shed the virus for years and I was not to take M anywhere there would be pregnant women. Where in Utah Valley (where we lived at the time) are there no pregnant women? I still don’t have an answer to that one. And even if there were a place, anyone who hasn’t had a first time infection can contract the virus and take it home. Furthermore, as I discovered during my underground life, there are plenty of people who are taking immunosuppressive drugs or who suffer other conditions for which CMV poses serious threats.

    One thing for sure, there were lots of pregnant women at church. Yet I couldn’t leave M at home when she needed constant supervision. Also, believe it or not, my husband’s place of work had suffered a fire and he was working 14 hr. days, 7 days a week, trying to help salvage the company. So I went into seclusion — not an easy thing because I’m a fairly social person. I felt resolute about our own having been infected and affected as we’d been. But I couldn’t reconcile the horror I felt over the possibility that we might infect another woman and unborn child.

    Since many people had never heard of CVM, they couldn’t process the implications it had for our — especially my — behavior.

    Is this too much, yet? Then add to this the problems other illnesses brought into our household. When my youngest daughter turned 3, I tried sending her to Primary. Every third time she brought home an illness. So we pulled her out. We keep a very low profile during flu season. We’ve had winters where practically all I did was combat the effects of influenzas and colds and try to keep everybody alive. I could write an entire post on the problems of illness and church attendance, because we’re not the only ones for whom socially casual illnesses that are passed around a congregation like Sacrament trays cause terrible problems. Someday, our culture will no longer be able to support this behavior. Not just because it puts a few high risk people in danger but because the unthinking attitudes we have toward personal hygiene and spreading germs are among the unsustainable behaviors we engage in that do injury in the world at large, injury we don’t know we’re doing.

    Eve, answering your question with true stores revealing specific words and deeds is sorely tempting. Are there horror stories? Absolutely. It hurts to think about them.

    But I think to keep my soul intact and to try to not add to the burdens of others, I’ll wrap up this way. Before I gave birth to M, I lived a charmed life. I had no problems worth mentioning. My health was great, I had energy and time to burn, I suffered no depression, I thought there was nothing I couldn’t handle.

    After M’s birth, I discovered that poor health and depression really do exist, people really do have troubles that cause them to feel overwhelmed, and by cracky,they are overwhelmed. With my dawning awareness, I faced the fact that had I come upon the wayfarer in the ditch in Christ’s Parable of the Good Samaritan, I would have done worse than simply pass by on the other side. I would have gone over and lectured the poor guy: “Get up! You’re not doing yourself any good by lying there!”

    Probably, after adding to the man’s burden in this way, I’d have studied the situation and then come to my senses and helped him. But still …

  17. StillConfused on April 28, 2008 at 5:26 pm

    I don’t know if it is possible in light of her condition, but when my son would “throw fits” he responded well to being held very tightly in my lap. But with her pain, that may not be an option.

  18. Eve on April 28, 2008 at 5:31 pm

    Thanks, Patricia, for taking the time to provide such clear explanations and examples. Now I understand a little better what you mean. I can definitely see why such specific recollections would be painful.

    One of the reasons I asked was that, to the extent I can avoid it, I don’t want to make unknowingly insensitive remarks based on ignorant or faulty assumptions. Like all of us, I suppose, I’ve made many such causal unthinking remarks about others’ situations over the course of my life. Sometimes I’ve later recalled things I’ve said with regret, and other faulty assumptions I undoubtedly continue to harbor without being aware of them. And like all of us, I’ve also been the subject of others’ generally well-meaning been faulty assumptions about the circumstances of my life.

    One of the things I take from your narratives is a reminder of how little we may know of each others’ lives. So often all that appears are the external decisions–in your case, not to attend church or other social gatherings, for example. The immense life-and-death complexities underlying such decisions may not ever be evident to most of us. I suspect all of our lives are more complicated than they appear from the outside. That’s a salutary reminder to me when I’m tempted to pass judgment on someone else’s actions.

  19. Patricia Karamesines on April 28, 2008 at 5:36 pm

    kevinf said: ” … your post reminds me that the challenges of the world we’re in are real, more real than we care to acknowledge.”

    Thank you, yes, that’s something I’m trying to say. That these things seem unbelievable, but they’re real.

    Another thing I’m trying to say, though I’m not sure it has come through: Just because a problem looks unsolvable, and the people you rely upon for informed judgment and direction say its unsolvable, doesn’t mean that it is. Raising M has been an adventure in uncovering the possible.

    Recently, I’ve discovered an interesting perk of raising M. What I’m learning at home about creating options and helping M to create and choose has proven unexpectedly useful in the classroom. The community college where I teach has a higher percentage of students facing special challenges than I’ve ever experienced. I get at least one and often three to five students per class who need extra help seeing and/or creating options for themselves. One student might suffer a “disability” that has this label; another student has a challenge with another label. I think that all the really popular “disabilities” are well represented.

    For instance: I had a student with pretty serious [fill in the letters]. When she took her first English competency test, I saw something interesting in her answers. She got all the answers in the first third of the test correct and all the answers in the remaining two-thirds wrong. When something like this happens in M’s behavior, it usually means she has hit her limits. I wondered what would happen if I broke the test up into three parts and administered them to the student over three days. Legally, she was entitled to extra time to take the test anyway, though she didn’t assert that right. She went along with the experiment, though. The result: she passed the test just fine.

    That’s about all I accomplished with this student, but it gave me something more to add to the lessons I’m learning about how to trigger ability in people. Language is a big factor. It’s one of the most powerful ways to open possibilities for others and to help them learn to create options for themselves. You get that human agency going in people and their intelligence bumps up.

  20. Patricia Karamesines on April 28, 2008 at 5:46 pm

    Oh, kevinf, about this: “And don’t be too hard on your bishop. I’m guessing he went home, and pounded himself in the forehead for that particular comment.”

    No, kevinf, I don’t think this particular bishop did that.

    But never fear. My testimony, beliefs, love for others, sense of responsibility are not dependent upon other’s behavior toward me. Thank goodness for that!

    Given the errors I’ve committed, especially the ones pre-M, I can let the guy go, with my blessing.

  21. Patricia Karamesines on April 28, 2008 at 5:54 pm

    “when my son would “throw fits” he responded well to being held very tightly in my lap. But with her pain, that may not be an option.”

    I can’t tell you how happy I am to hear you did this for your son! Yes, M responds to being held, but she’s getting darn heavy. I can still pick her up but we’re stretching it and I can’t hold her for very long. One of the things we’re trying to do is find alternative ways of comforting her, ones that don’t take such a toll on my knees and back.

    And yes, it depends on what the problem is. Pain needs a different kind of relief; my picking her up could make it worse. Sometimes I just lay on the bed beside her studying her body while she wails, trying to discern what the problem is, where it is. All these things take time.

  22. Patricia Karamesines on April 28, 2008 at 9:33 pm

    “One of the reasons I asked was that, to the extent I can avoid it, I don’t want to make unknowingly insensitive remarks based on ignorant or faulty assumptions.”

    I worry about doing this, too, especially when writing a piece like this. My hope is to communicate what we’ve experienced in a useful way, but the topic is highly charged, so how do I talk about it constructively? This series has been an experiment in trying to find language that not only puts our experience with M out there in a way people can make something of, but also to provide me a chance to learn what people want to know and how to respond to what the audience for pieces like this need.

    Also, my husband and I are very worried about trends we see internationally and here at home regarding the care and rights of the “disabled.” M and many others can’t speak for themselves and rely upon others to keep their stories open. As our own experience evidences, a lot of language directed at the disabled cuts them off.

    “One of the things I take from your narratives is a reminder of how little we may know of each others’ lives.”

    A great observation. A friend of mine told me that when her husband was diagnosed with cancer, friends came forward and gave her information on a “need to know” basis that helped her cope and prepare for what lay ahead. She said she’d known some of these people for years and had no clue they had cancer. She said that the reasons they gave for keeping their conditions to themselves included people giving them “helpful” advice that didn’t help at all. In our own situation, we sometimes endured rather than spend energy on explanations and arguments that changed nothing. We needed that energy to meet our responsibilities at home.

    Also, even in this enlightened time, wisps of “you must have done something very wrong to deserve this” rise from the pots of many conversations. Some people invest heavily in their own good standing, propping up their ease and success with others’ misfortune. They have no idea how fragile their own situations are.

    Which leads me back to making comparisons and meems’s comment. With these stories, I wish to give comfort to people, I don’t want anyone to suffer on account of them. Many among us need practical help and loving kindness. There have been times when, carrying a baby and trying to maneuver a stroller with M it in, I just needed someone to open a door for me. That’s what I hope to do with these stories — open a door for people already carrying a load.

    That and begin to learn to speak for M, so to keep her story open against the tide of rhetoric attempting to close it.

  23. jessawhy on April 28, 2008 at 10:19 pm

    Thank you for sharing this. I’ve read all three parts and have learned so much.
    Do you know of a support group for LDS families facing similar challenges?
    I’m interested in forwarding your posts to some friends in similar situations. Do you think that is a good idea? Like Eve, I probably haven’t been as sensitive as I should have been in the past, and I don’t want to offend in the future.
    Do you have a rule of thumb for helping those of us with good intentions to not put our collective feet in our mouths when we reach out?
    Thanks again for the post, I hope I haven’t asked too many questions.

  24. CS Eric on April 29, 2008 at 9:34 am

    I had an experience similar to the “veggie” comment. My wife has serious health problems, and at one point my branch president asked me why I was still married to her. Grrr….

    One of the things I like most about these posts is that it shows how many people are coping with what, on the outside, seem to be insurmountable problems. But they take those problems on, day by day, and miracles, whether small or large, happen. Even if that miracle is only that we gain greater insight into the lives of others. For example, I love the story of giving the test in three parts. Brilliant!

  25. queuno on April 29, 2008 at 10:17 am

    While caring for my mentally retarded brother, my parents suffered for 14 years with insensitive comments from leaders and follow Church congregants, and I still find it amazing that we didn’t go inactive during that time. Especially when before his funeral, a “friend” of theirs (and future bishop, one of the most xenophobic Church members I’ve ever known) said, “things are probably feeling easier now”. My mother went off on him — the one time I think she’s ever gotten publicly upset like that. The poor fool probably chalked it up to funeral stress.

    (Yes, my parents insisted on using the more clinical term “mentally retarded”. Hope I didn’t offend.)

    First, the first thought I had was something along the lines of Julie’s, above. I don’t know what I would have done in that bishop’s office except lose a little of testimony and questioned his authority over me.

    Actually, I think it helped my testimony, actually. Sure, the leaders were absolute dolts, but I learned from a very early age not to “mythologize” (is that a word?) my leaders. Leaders are human, fallible, and prone to insensitivity just like anyone else. You can be absolutely upset at a bishop for a stupid comment and still sustain him and have respect for the calling and the mantle, if not the man occupying it.

  26. East Coast on April 29, 2008 at 10:53 am

    I’ve wanted to comment on these last two posts, but I think I’m suffering from “suffering burnout” this week so it’s taken a few days to get to it. The catalyst for my current state is missing my grandmother’s funeral and my brother’s wedding at the end of this week — the cardiologist wouldn’t clear my little guy for travel to the higher elevation in Utah (I actually agree with the cardiologist but that doesn’t stop some irrational flashes of anger toward him) and the baby is still nursing and would be stressed to have me gone, so no travel.

    Once again, your posts were very well written. I’ll have to come back and read them again when things even out.

    A comment on the discussion with Eve; yes, people have been antagonistic. Some people react with fear (a mother expecting a baby, for instance), many people react by largely ignoring our situation, some people respond with anger. All three reactions have astounded me but particularly the anger.

    Just recently I’ve had to tell lots of people that no, I won’t be attending ward temple day. (Do they think I’m going to drive three and a half hours with a medically sensitive baby and then leave him to be babysat by the ward’s Young Women!?! Do they all know CPR? Would they even be able to tell if there was a problem? Would they be able to direct emergency services to the stake center?) This is when I use that “need to know” judgment call and give people a wistful smile and say, “No.”

    And then there is that pesky funeral-wedding thing this weekend. Besides mourning the loss of my grandmother and mourning that I wasn’t able to spend time with her over the past fifteen years and being devastated that I can’t go to her funeral and mourning my inability to go to my brother’s wedding and being anxious because my son isn’t doing well enough to travel, there is the guilt that I’m depriving my parents that greatest of all experiences of Mormon life of having all their children with them in the temple for the marriage of their youngest child. Once again I exercised that “need to know” judgment when my visiting teachers came yesterday. “How are you doing?” one of them asked. “Fine,” I said.

    “To suffering must be added mourning, understanding, patience, love, openness and the willingness to remain vulnerable.” Either that or everyone will wonder why I’m going around biting people’s heads off.

  27. queuno on April 29, 2008 at 11:05 am

    There is the guilt that I’m depriving my parents that greatest of all experiences of Mormon life of having all their children with them in the temple for the marriage of their youngest child.

    Parents need to get over this. Really. It’s not healthy, and it can impose incredible/unrealistic expectations. When we marry, we are to leave our parents and cleave to our spouse. Sometimes, this means that the priorities of our immediate family come into conflict with the priorities of our extended family (yes, and once you get married, parents and siblings are now extended family), and the immediate family should come first.

  28. William Morris on April 29, 2008 at 2:01 pm

    You get that human agency going in people and their intelligence bumps up.

    I am continually amazed (and so quickly forget) by how true this is — and by how language is such a power to hedge and unfold the exercise of agency.

  29. William Morris on April 29, 2008 at 2:01 pm

    You get that human agency going in people and their intelligence bumps up.

    I am continually amazed (and so quickly forget) by how true this is — and by how language has such a power to hedge and also unfold the exercise of agency.

  30. Sariah Wilson on April 29, 2008 at 5:12 pm

    I’m assuming this is the end? If it is, thank you again for writing this.

    I know what it’s like to endure sometimes well meant (and sometimes mean and spiteful) comments. I’ve learned what it is to suffer a quiet pain that most people can’t even begin to comprehend. And like East Coast, I find it so much easier to keep it to myself than have to explain it to every single person who comes along. I was once very tempted to buy one of those T-shirts that said, “I’m not a brat. I have autism.” But then I figured that I didn’t owe anyone else an explanation and if they chose to judge me or my son, that was between them and the Lord and I had nothing to do with it.

    I am in awe of your struggles, your strength and your hope, Patricia.

  31. Patricia Karamesines on April 29, 2008 at 5:47 pm

    Not quite the end. Sorry to be out of touch, been busy today with family stuff. I’ll be back soon.

  32. Patricia Karamesines on April 29, 2008 at 8:12 pm

    Jessawhy, #23: No, I don’t know of any support groups but would be interested in hearing of any. From time to time, I’ve thought about running a blog or website along those lines, but I don’t have enough time now. Maybe in the future.

    Also, you asked: I’m interested in forwarding your posts to some friends in similar situations. Do you think that is a good idea?

    I guess if it were me forwarding posts like this, I’d first ask my friends if they might be interested in reading them. You could provide a brief summary or cut and paste some passages as a sampler so they could judge whether or not these posts are something they’re interested in reading right now. If you know these friends especially well, you might want to warn them about content in case I raise issues that you know they’re especially sensitive to. That’s my best advice.

    You asked: Do you have a rule of thumb for helping those of us with good intentions to not put our collective feet in our mouths when we reach out?

    Hm, I don’t know. Be interested in people? Wonder who they are? Wonder about what they mean by what they’re saying? Listen to them for years, because it takes years to get to know another person and his or her language and understand what they mean?

    I guess my only casual and most widely applicable rule is this one: Cut slack unto others as you would hope slack would be cut unto you.

    Thanks for your good questions, jessawhy. Hope my responses are worthwhile.

  33. Patricia Karamesines on April 29, 2008 at 8:24 pm

    CS Eric: I really appreciate your taking the time to read these posts and comment, especially on the dividing the test story. Glad you liked that! That incident provided me a good lesson in looking past the apparent. I’d guess it was probably even more of a breakthrough for me than it was for the student.

  34. ECS on April 29, 2008 at 8:31 pm

    Thank you for writing these beautifully-written, powerful posts, Patricia. May the Lord bless and keep you and your sweet family.

  35. Patricia Karamesines on April 29, 2008 at 9:26 pm

    # 25, queno: “(Yes, my parents insisted on using the more clinical term “mentally retarded”. Hope I didn’t offend.)”

    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.

  36. Patricia Karamesines on April 29, 2008 at 11:24 pm

    # 26, East Coast: You’re doing the right thing protecting the one who needs protecting, which you know, of course. All the other folks involved are big boys and girls.

    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.

  37. Eve on April 29, 2008 at 11:44 pm

    Just one more thought. I know it’s not even in the same universe as being the parent of a disabled child, but a few years ago I worked for awhile with developmentally disabled adults. It was a physically and emotionally exhausting, hilarious, painful job, one that I never was particularly good at, but it was thoroughly illuminating.

    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.

  38. jessawhy on April 30, 2008 at 1:18 am

    Patricia,
    Thanks for your answers to all of my questions. You made great points about forwarding your post to others. I will think harder about it.
    I had one more question, and please feel free to tell me if it is offensive, but I remember reading a news article recently about a family of a girl who was developmentally delayed who had surgery on their daughter to keep her as a child, so her body wouldn’t mature to adulthood. I believe it is called the “Ashley Treatment” From what I remember it was very bioethically controversial.
    I’m wondering if you’ve heard of this procedure and if so, what is your opinion on this method to keep these children from growing into full-size adults?

  39. Patricia Karamesines on April 30, 2008 at 10:28 am

    # 37, Eve said, “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.”

    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.

  40. Patricia Karamesines on April 30, 2008 at 11:11 am

    # 38, jessawhy: “I remember reading a news article recently about a family of a girl who was developmentally delayed who had surgery on their daughter to keep her as a child, so her body wouldn’t mature to adulthood. I believe it is called the “Ashley Treatment” From what I remember it was very bioethically controversial. I’m wondering if you’ve heard of this procedure and if so, what is your opinion on this method to keep these children from growing into full-size adults?”

    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.

  41. Patricia Karamesines on April 30, 2008 at 1:25 pm

    I am deeply grateful to have been able to celebrate M’s sixteenth birthday and commemorate Earth Day in this manner. Thanks to Times and Seasons for putting up with it. I appreciate everyone who invested time reading this rough writing in whatever portions they did. In the comments people made, I found comfort, good company, and many reasons to go on in my thinking.

    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.

  42. William Morris on April 30, 2008 at 2:04 pm

    Thank you!

  43. queuno on May 19, 2008 at 12:34 am

    Patricia (35) – I’m just too used to the term “mentally retarded” now, I guess, and for whatever reason, our family’s experience probably has permanently affected us to the point where we probably wouldn’t give it using it, except that my brother died a couple of decades ago, now.

    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.