Bittersweet Sixteen: Part Two

April 23, 2008 | 16 comments
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So there I was, staring the lavishness of my ignorance. I saw the presence it had in the world, how it could impoverish and destroy as efficiently as the most inspired scientific breakthrough could improve somebody’s standard of living. Before M was diagnosed, I saw my ignorance in a slanted light as I came to realize she wasn’t showing herself to me in a way I could understand. The light came up a little more when the nature and degree of her trouble dawned and our family found itself standing at a door we didn’t know for sure would open. But that day I began to comprehend the nature of the creature I’d unleashed, unknowingly, upon M at a perfectly vulnerable stage of her coming into being, the world changed in a blue bolt. I stood in its light, nakedly responsible. The tension that always exists between what I think I know and what is actually true slackened. The scene the gap in its curtain revealed was broad and breathtaking.

Too bad the insight had come at M’s expense. There was no time or energy to be squandered in self-recrimination. M was lost and needed help. Now.

As I pursued M into the labyrinth, I discovered that the wealth of my ignorance was merely part of a communal treasure house of dazzling unknowingness. Sitting secure on its mound of gold, the world in general seemed to find the one that had been forced astray an acceptable and inevitable loss, more of a scapegoat than a lamb. In many cases, prejudice and/or arrogance reinforced the well-guarded vaults containing the booty.

When M was finally diagnosed as being severely “developmentally delayed,” the qualified medical professionals offered little or no hope for her inheritance of human intelligence. They imagined that the virus had already plundered the bulk of it. The list of “she will nevers” ran off the table and onto the floor. Everything had to be wrong; nothing could be right: She was deaf, blind, a quadriplegic, she had a mass in her abdomen. My observations about my daughter’s condition and abilities, acquired during hours of ‘round the clock observation, had little value in examination rooms.

Example: Because many CMV babies lose their hearing, either before they’re born or before they turn two, our pediatrician fixed on the idea that M was likely deaf. In fact, M’s hearing was her best sense and remains so to this day, but in the clinical environment, which frightened her, she tended to withdraw or because of rough handling screamed in fright so that none of the docs could tell anything, including that she was screaming because they terrified her. I told the pediatrician, “Her hearing is normal, if not better,” but he pushed for a BAER (brainstem auditory evoked response) test.

So we took M to hospital for the BAER. The nurse who weighed M did so on a kilo scale then converted the kilos into pounds incorrectly, listing M’s weight six pounds heavier than she was. At this time, she was only a year and a half old and small for her age, as many microcephalic children are. Since her weight was being used to calculate the dosage of the sedative she’d be given to prep her for the test, I told another nurse that M did not weigh as much as the first nurse had figured. This nurse acknowledged my remark. They administered the sedative, and M went out like a light in my husband’s arms. My husband took her in for the BAER while I kept my then three-and-a-half year old son occupied exploring corridors.

The hospital had recently bought a new machine for running BAER tests and the techs were excited about putting it through its paces. They placed earphones on M’s ears and attached electrodes to her skull and conducted the test. The results excited them. M’s hearing responses, they said, were “textbook perfect.” Other children to whom they’d administered the test that day had produced negatives; that is, they were deaf. M was the first positive they’d gotten and it lifted their spirits.

A lot of time and money to confirm what I already knew and had stated for the record. Furthermore, in appeared that the nurses had over-medicated M. She didn’t come out of her drug-induced sleep till the next morning, just as I was began to think I needed to take her back to the hospital to see if something had gone wrong. Even after M regained consciousness, she was groggy and slow to respond for the next couple of days.

Under the early guidance of Dave, a truly gifted and dedicated pediatric physical therapist, my husband and I helped M accomplish some of the landmarks of early childhood development – late though they were – and scratched them off the “will never” list. She began rolling front to back, and when placed on her belly, eventually reached a point where she scrabbled a few feet across the floor. With help positioning herself, she could sit up, supporting the weight of her upper body on her arms. I watched her sit for hours in her electric swing kicking first one foot, then the other, up and down in the rhythm of walking, a look of deep concentration on her face. Dave proved to the greatest outside blessing – especially for M– that we’d ever be given on this journey. Understanding that many children responded better when treated in their homes, he visited us once a week to work with M and to teach me how to continue her PT the rest of the week. He loved her smile (which some doctors didn’t believe she had), and some days he ended his work with her when she smiled at him.

Back then in Utah, many doctors looked down upon physical therapy, believing it ineffectual. At least, all of ours did. Both our pediatrician and our neurologist at that time said of our PT, “I don’t believe physical therapy works, but for some reason Dave’s patients often show considerable improvement.” When Dave retired, there was no one anywhere near as committed and inspired to take his place. We were forced to turn to institutional care, which meant a two-hour long round trip up to a clinic in Salt Lake City every week and two to three hours spent in therapy while there. My husband took off work every Thursday to drive M up while I stayed home with the new baby.

The year M turned 8 we paid $10,000 out of pocket for special equipment and physical, occupational, and speech therapy at this clinic. Instead of just one therapist, like she’d had before, she now had two – a physical therapist and an occupational therapist – and on paper, a speech therapist, though the ST saw M infrequently. Our hope was that the momentum M had built under our care and Dave’s brilliant, deep-feeling and therapeutic relationship with her would continue under the clinic’s auspices.

Instead, her condition deteriorated. The neurologist in charge of M’s case at this time talked us into botox injections for her left foot, the one that showed the most obvious effects of clonus. That left foot curved sharply inward and the tendons in that leg had shortened. The purpose of the botox injections was to kill the nerves and stop the clonus, then repeated plaster casting, followed up by AFOs, was supposed to straighten the leg and halt the effects of cerebral palsy on M’s left side. The technician who designed the AFOs never saw M nor did he examine her to check the quality of the AFOs’ fit, which turned out to be poor. The PT tried to compensate for the technician’s failures in design by padding the devices with foam.

At first, this treatment seemed to work, since the leg relaxed and her foot appeared to straighten. But as the casting progressed we noticed a strange phenomenon. Displaced by the treatment, the impulse to twist inward that had manifest itself in that left foot traveled up into M’s spine, and as the repeated botox treatments and casting continued, her scoliosis, which had for years been mild and manageable, dramatically accelerated. We noticed the difference and reported it to the PT and OT. When the PT pointed out to the neurologist that M’s scoliosis had accelerated since the beginning of the treatment, the neurologist disagreed bluntly without conducting an examination. “I don’t see it,” she said. The fact that she didn’t see M often while the PT saw her every week did not give her pause.

Two more events that occurred at this clinic broke our hearts. The first involved M’s developing social desires. We were very anxious that M develop relationships outside our home. As our visits to the clinic went by, my husband was excited to report that M liked the PT and responded well to her. We were overjoyed that M had a friend, even if we had to pay for that friend.

One day, this PT said that she didn’t see a reason to continue physical therapy because M wasn’t interested in interacting with her environment. Earlier in the program she had said that she didn’t see M ever walking because she didn’t seem to want to. She had failed to perceive the meaning or importance of M’s feeling for her. But more importantly, nobody had proposed to M the possibility of walking in a way that she could make sense of. Always with her it’s a slow process of putting choices to her in bits, in different ways, over long periods of time until she reaches a point where she makes a decision herself. The matrix for M’s ability to choose: the quality of affection she feels from people putting the matter to her.

The second event was more immediately and obviously damaging. We had set a goal with the occupational therapist to teach M to take food from someone other than me. Since I had breastfed her, and since I had taken on the complicated task of feeding her during two-hour long sittings per meal each day, M looked to me for smoothly conducted and satisfying meals. We had developed a system for these feedings that was difficult for others to duplicate and nearly impossible to explain. I didn’t mind doing it, but M’s meals pinned me down for nearly six hours a day. I wanted help teaching her to speed up the process and to accept food from other people.

One day, when Mark brought M back from her sessions in Salt Lake, I hurried and sat her down to feed her, since she’d been gone more than five hours without a meal and was no doubt hungry and thirsty. When I placed my hand on M’s forehead – a signal we had worked out that typically prompted M to open her mouth – her face contorted and she suddenly started screaming. The rage in her face stunned me. “What in the world? What happened to her up there?” I asked.

My husband explained that the OT had been working on getting M to accept food (that my husband had prepared) from a plastic, brush-like tool, and that at first M had been interested, opening her mouth to accept it. But after a few mouthfuls, M had gone as far along as she could that day on her risk-choice scale. She’d laid it all down on a few mouthfuls of a new experience. The OT had no idea of the milestone she’d accomplished with those few mouthfuls. Determined to proceed despite M’s obvious unwillingness, she pushed past our daughter’s limits, forcing the tool into her mouth and violating her trust.

Following this trauma, M’s food intake at home fell off. For four days, she fought our feedings, expressing her deep outrage each time. After those four days she settled down, but I had to cajole and entertain to get her to drink a minimum amount of the special formula we fed her. Two weeks passed before we returned to a normal feeding schedule. As for our goal of the OT helping us to teach M to take food from other people – it was over. The OT knew she’d done the wrong thing and apologized. But M never trusted her again.

This clinic had a three strikes attendance rule. Miss appointments three times, even if you called ahead to cancel, and you were kicked out of the program. Also, it had a rule stating that parents were not to bring their children if they were ill – quite sensible. But over the course of several months, we missed twice for illness and once for car trouble. Our suspension from the program came as a relief.

Even before birth, M had survived a devastating attack from an opportunistic organism. Somehow she’d preserved her hearing, the organ sense that typically falls victim to a CMV attack. In the 8 years since her birth, she’d fought her way through cortical blindness to become a sighted child rather than a blind one. For reasons unknown to us, she had stopped having multiple daily seizures at nine months old and we learned how to avoid triggering them afterwards, without the aid of pharmaceuticals. She overcame the loss of her swallowing reflex, regaining it with just a little help from me and inspiration from God and the animal world. Every single day she won skirmishes for increasing awareness in spite of the uncertainty and frightfulness she met at every turn of the noisy, glaring, aggressive, insensitive world she took. Her epic journey on the remaining approximate one-half of her brain, with her brainstem having been almost annihilated, had been continuing and courageous. My husband and I understood that the “she will nevers” and “she isn’t interesteds” the majority of her care givers flung at her were not reflections of M’s investment in being in the world but of the limits of her caregivers’ abilities, interest, intuition, and creativity. We had found the edges of their capacity, not M’s.

Given how she’d been strip-mined before she even came into this world; given the effort she put into surviving before and after her birth; given how every day she had to endure and compensate for the tidy sum of ignorance I’d thrown at her and the seemingly endless cold cash of insensibility the culture at large could spend to ward her away; taking into consideration the high and wide and seemingly insurmountalbe physical hurdles she’d cleared in spite of everything, M was a bloomin’ genius. As are very possibly so many of these children. It’s not these kids that are severely developmentally delayed, it’s us, for assuming what we see is all there is, for erecting cathedrals of ignorance and building brazen images upon their delicate and sacred landscapes.

(To be continued … hang in there.)

16 Responses to Bittersweet Sixteen: Part Two

  1. Adam Greenwood on April 23, 2008 at 1:47 pm

    We’ll hang in there, no fear. Keep on.

  2. cchrissyy on April 23, 2008 at 2:11 pm

    “My husband and I understood that the “she will nevers” and “she isn’t interesteds” the majority of her care givers flung at her were not reflections of M’s investment in being in the world but of the limits of her caregivers’ abilities, interest, intuition, and creativity. We had found the edges of their capacity, not M’s.”

    Well put! That is so true. And it’s why it’s so important to get doctors and therapists who actually believe in recovery and have seen it happen before.
    Not that I have experience in her exact condition, but just as a general principle- don’t waste valuable years of intervention with professionals who don’t beleive they’ll get anywhere significant. They’ll probably prove themselves right.

  3. Jonovitch on April 23, 2008 at 2:34 pm

    Patricia, these are incredible stories. Thank you for sharing.

    Despite the incessant tragedies (both in parts one and two), I can’t help but sense a feeling of triumph in these lines. Am I sensing that correctly?

    Jon

  4. Johnna on April 23, 2008 at 3:58 pm

    Patricia, I just found this and read Part 1 as well.

    Thank you for telling this story. I have for years now followed your writing and been a sort of fan, even thrilled that I got to shake your hand at the AML conference last month. I did not know you had this whole other life, this secret or underground life.

    It is surprising to me–yes shallow that I am–that there is anything in your life other than the care of your child–you are someone I’ve admired. I think I’ve always thought if I had a disabled child, nothing else in my life could happen. Game over, you’re in the army now. I look at the care my mother is now providing my grandmother, or wonder about the role I might play in my mother-in-law’s later life, and I see it as an unstoppable wall. I cluelessly, possibly ineffectively, work on my kids’ learning disabilities or whatever their conditions are, and have a certain sense of shame about it.

    The other thing is, it is surprising, and hopeful, for me that you say the gospel has been relevant and encouraging in your situation. Of late I’ve felt frustrated, like the gospel as I’m hearing it in church seems to be for those without problems, without suffering, without intractable situations. I really don’t want to go outside, to nonMormon Christianity, but I have been thinking wistfully about the pleasures of attending somewhere else on the side, where they will talk about the nuts and bolts of dealing with life stinks.

  5. Patricia Karamesines on April 23, 2008 at 5:53 pm

    Jon, I guess if I had a phrase for it, it would be something like “exuberant faith” rather than triumph, since I’m painfully aware I was an idiot and am still deeply wrong about everything. But I’m less wrong now and if I keep at it, I’ll become less wrong still — that’s enough to give me grounds for ironic optimism.

    Irony, to me, is the tension that exists between what you think you know and what actually is going on. It’s that unexplored wilderness lying between where you think you’re standing and where God’s standing.

  6. kevinf on April 23, 2008 at 6:11 pm

    Patricia, your writing is always a joy to read, but this one breaks my heart. Such powerful words for such great pain. Thanks for helping us all to see how to carry on in the face of truly overwhelming realities.

    I also echo your frustrations over the medical community that tries so hard to help, but often doesn’t listen very well. We have a 20 year old son with some irritating chronic illnesses (nothing on the scale that you are dealing with), but with one issue we were 6 years getting an accurate diagnosis and the correct treatment, and with the other issue, we have now gone one year, slowly circling the same points, with no new answers to show for the effort and expense. It’s a little easier now for us to go forward, after reading this.

  7. Jonovitch on April 23, 2008 at 6:18 pm

    Patricia, after I thought about it some more, I ended up on the word “defiant.”

    It seems that despite the terrible hand you’ve been dealt (“you” being the plural form, including your husband and daughter), despite the awful reassurances from those who know better, and despite the endless list of things that will just never happen and can’t ever be, you seem to have figuratively told them all (including fate itself) to go stick it (to put it mildly) and proven them wrong, time and time again.

    So I guess it feels like both in my mind: triumphant defiance.

    Jon

  8. Tatiana on April 23, 2008 at 6:20 pm

    Patricia, thank you again. I don’t have words to express how much faith and hope I feel while reading your story. You give me courage and energy.

  9. Ugly Mahana on April 23, 2008 at 6:36 pm

    Wow.

  10. Patricia Karamesines on April 23, 2008 at 6:44 pm

    Hi Johnna! Thank you for your kind words and for reading my … stuff. I’m very glad it’s given you some pleasure.

    About this: “I cluelessly, possibly ineffectively, work on my kids’ learning disabilities or whatever their conditions are, and have a certain sense of shame about it.”

    I’m not sure what you mean by “shame.” I haven’t had much experience with shame but know people who have, and it seems to me that in many cases, shame is a package someone else has delivered to you COD that you unwittingly paid for and accepted, thinking that you had to. But I don’t know much about it. I do know that, in my own circumstances, if I accept that package everytime it tries to show up at my door it will draw off energy and focus I need for the work at hand, so I shamelessly mark it, “Refused. Return to Sender.” With one of those little pointing finger hands the USPS stamps on such things.

    “The other thing is, it is surprising, and hopeful, for me that you say the gospel has been relevant and encouraging in your situation. Of late I’ve felt frustrated, like the gospel as I’m hearing it in church seems to be for those without problems, without suffering, without intractable situations. I really don’t want to go outside, to nonMormon Christianity, but I have been thinking wistfully about the pleasures of attending somewhere else on the side, where they will talk about the nuts and bolts of dealing with life stinks.”

    Johnna, your being at the AML meeting suggests you’re interested in language and using it in a meaningful fashion. So maybe you’ll understand what I mean when I say that that language you hear in church that sounds like it’s meant for those without problems is more an artifact of people who have problems not having the language they need to deal with them trying to make their lives fit into what’s at hand rather than it is about what people actually need and want. Believe me, if you say something that gives people the words they need for something they’re feeling, they often jump at it, saying, “I’ve been looking for this!” Everybody needs help.

    Cultivating better language will provide people the opportunity to make more of what happens to them and more of what scripture says. One misunderstanding people in general have about language is that it ought to “capture” experience and meaning but doesn’t, at least not to any satisfying degree. Seems like a frustrating trap to get caught in. In fact, language creates experience, which makes it a far more dynamic and living system than we’re used to thinking of it as being. The better the language, the better environment it provides for experience to unfold.

    And life doesn’t stink. That fragrance is the odor of expectations getting old and a little ripe.

  11. Lora on April 23, 2008 at 7:06 pm

    Loved the energy behind your write. It’s a good example for me when I feel so drawn thin and almost vaporous.
    In the comments section you talked about that COD shame package and I’m pretty sure that’s the clearest image of that bad habit I have ever encountered. I bet I can do a better job of stopping those deliveries now. Thanks.

    Your accounts of doctors practicing their own realm of ignorance is the kind of stuff that needs to be said. I am learning more and more how ignorant I may be, but then as a stay at home mom I get treated that way anyway. Now how about those doctors who mistake their personal opinion for scientific fact? Can you help me find some really heavy language that I can bop them over the head with? I’m not really aiming for understanding here- I’m just aiming.
    Now none of you fine doctors get upset. I wasn’t really talking about any of you, anyway.

  12. Martin Willey on April 23, 2008 at 9:39 pm

    I am amazed and touched by how beautifully you describe such a difficult challenge. Mattea is so blessed to have you both as her parents. I can’t help but thinking that this expression of your experience and feelings provides an incalcuable service to many who suffer. Thank you.

  13. CS Eric on April 24, 2008 at 4:19 pm

    Patricia,

    I am at a loss for words. All I can do is echo your comment that: “the ‘she will nevers’ and ‘she isn’t interesteds’ the majority of her care givers flung at her were not reflections of M’s investment in being in the world but of the limits of her caregivers’ abilities, interest, intuition, and creativity. We had found the edges of their capacity, not M’s.”

    I have experienced that attitude, but on a much smaller scale than yours. I think, too, that her capacity is also streched because of your abilities, interest, intuition, and creativity.

  14. JKS on April 24, 2008 at 9:47 pm

    “limits of her caregivers’ abilities, interest, intuition, and creativity. We had found the edges of their capacity, not M’s.”

    I took this to mean all her caregivers….including her parents. As a parent of a child who struggled with language delays I know I made a difference…..but there were never enough hours in the day to do the research and work with him and fulfill all my other responsibilities. Knowing that your child depends on you and your ability to find creative solutions and make decisions and know what to do is a big responsibility and there is no way as a parent you can do it as well as you want to (which is true about parenting all my children).
    I am grateful for the Lord’s guidance (which he gave) and his comfort (which I felt) and the strength (which he gave me). For me the challenges my children have had to face (and me because of them) have made me understand the Atonement more….and my faith in it has grown. In reading what Johnna wrote again, I think that this all happens in such a personal way, at home, when I’m alone, yes occasionally at church or at conference but inside my heart and not vocally and while interecting with people in a large group setting.
    The older I get the more I know that others around me have real heartache’s. They don’t always talk about them openly and they shouldn’t have to, but the struggles are there in everyone’s life. We don’t need to go to church and feel like its for people who are perfect.

  15. Patricia Karamesines on April 25, 2008 at 12:15 am

    “I took this to mean all her caregivers….including her parents. As a parent of a child who struggled with language delays I know I made a difference…..but there were never enough hours in the day to do the research and work with him and fulfill all my other responsibilities. Knowing that your child depends on you and your ability to find creative solutions and make decisions and know what to do is a big responsibility and there is no way as a parent you can do it as well as you want to (which is true about parenting all my children).”

    Too true. I could write an entire chapter on this aspect of being a caregiver. I did touch on it lightly in another post I wrote. Many times, she has needed more than we could give, for one reason or another. There are times my husband and I have been worn out with the effort and couldn’t go any farther — we just had to drop the ball for a while and get some sleep or go out and do some grocery shopping — our version of a date night. We’ve experienced difficult extra-domestic distractions that drew our attention away from her when she needed it. I’ve been slow to notice changes and trouble.

    Speaking of the husband, Mattea and I have another great blessing in our lives — her father, my man. In this matter alone, God has smiled on M (and me). M’s dedicated father has stood by her from the beginning, rock solid. He has solved several of her most difficult problems. He was the one who put an end to her years of severe reflux by hitting on the idea of adding multi-culture, whole milk yogurt to her formula (worked for us — might work for others). For years, one or the other of us had been sleeping by M’s side because many nights she would throw up her last meal and somebody had to be there to make sure she didn’t aspirate it. Sometimes it would happen while we were feeding her. The day he added the yogurt, her reflux became a rare rather than an expected event, relieving both M and us of a great burden. Using his background in chemical engineering, he has done all the R & D on the formula we feed her, refining it constantly over the years. He has handled the docs, he spends hours on the Internet researching equipment, diapers, new formula ingredients and reliable sources for all of the above. He makes what are now 70 mile trips to buy her organic yogurt and other special supplies. He goes on tenacious hunts for new music for her. He has given her a reason to speak: “Dad. I want Dad.”

    He has developed a home business so that he could be on hand to help with M’s needs and spell me off so I’m not totally housebound by Teah’s care. We’re not rich but we’re all together and doing okay. And when I go to AML meetings or to other writing workshops, he holds down the fort. Mostly. I give him an “A” for effort, anyway. Dealing with M on your own is rough work, especially at feeding times.

    He saved my sanity by moving us down to where I could get out into the backrocks and recharge my batteries. Whenever a change or problem arises with M, he’ll spend the hours with me trying to figure out what’s going on and what to do. I would not have survived all this without him.

    He has a keen sense for what’s important. Even when we owned a Saab (long, long time ago), he told me I could wreck any of our cars anytime I wanted — he wouldn’t get angry. What a man!

  16. Patricia Karamesines on April 25, 2008 at 12:27 am

    Everybody, thanks for your encouraging remarks and your contributions to the discussion. There’s been some good, useful, and comforting words spoken in the comments. Tatiana, I’m especially glad you found something useful. Best wishes.

    As always, anybody who might like to tell their own stories, as some have in the comments to these two posts, please, feel free.

    The third part will go up in a couple days.

WELCOME

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