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 â€œdevelopmentally delayed,â€ 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 â€œshe will neversâ€ 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 daughterâ€™s condition and abilities, acquired during hours of â€˜round the clock observation, had little value in examination rooms.
Example: Because many CMV babies lose their hearing, either before theyâ€™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, â€œHer hearing is normal, if not better,â€ 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 Mâ€™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 sheâ€™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 husbandâ€™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 Mâ€™s ears and attached electrodes to her skull and conducted the test. The results excited them. Mâ€™s hearing responses, they said, were â€œtextbook perfect.â€ Other children to whom theyâ€™d administered the test that day had produced negatives; that is, they were deaf. M was the first positive theyâ€™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 didnâ€™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 â€“ late though they were â€“ and scratched them off the â€œwill neverâ€ 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 â€“ especially for Mâ€“ that weâ€™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 didnâ€™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, â€œI donâ€™t believe physical therapy works, but for some reason Daveâ€™s patients often show considerable improvement.â€ 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 sheâ€™d had before, she now had two â€“ a physical therapist and an occupational therapist â€“ 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 Daveâ€™s brilliant, deep-feeling and therapeutic relationship with her would continue under the clinicâ€™s auspices.
Instead, her condition deteriorated. The neurologist in charge of Mâ€™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 Mâ€™s left side. The technician who designed the AFOs never saw M nor did he examine her to check the quality of the AFOsâ€™ fit, which turned out to be poor. The PT tried to compensate for the technicianâ€™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 Mâ€™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 Mâ€™s scoliosis had accelerated since the beginning of the treatment, the neurologist disagreed bluntly without conducting an examination. â€œI donâ€™t see it,â€ she said. The fact that she didnâ€™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 Mâ€™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 didnâ€™t see a reason to continue physical therapy because M wasnâ€™t interested in interacting with her environment. Earlier in the program she had said that she didnâ€™t see M ever walking because she didnâ€™t seem to want to. She had failed to perceive the meaning or importance of Mâ€™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 itâ€™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 Mâ€™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 didnâ€™t mind doing it, but Mâ€™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 sheâ€™d been gone more than five hours without a meal and was no doubt hungry and thirsty. When I placed my hand on Mâ€™s forehead â€“ a signal we had worked out that typically prompted M to open her mouth â€“ her face contorted and she suddenly started screaming. The rage in her face stunned me. â€œWhat in the world? What happened to her up there?â€ 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. Sheâ€™d laid it all down on a few mouthfuls of a new experience. The OT had no idea of the milestone sheâ€™d accomplished with those few mouthfuls. Determined to proceed despite Mâ€™s obvious unwillingness, she pushed past our daughterâ€™s limits, forcing the tool into her mouth and violating her trust.
Following this trauma, Mâ€™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 â€“ 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 â€“ 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 sheâ€™d preserved her hearing, the organ sense that typically falls victim to a CMV attack. In the 8 years since her birth, sheâ€™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 â€œshe will neversâ€ and â€œshe isnâ€™t interestedsâ€ the majority of her care givers flung at her were not reflections of Mâ€™s investment in being in the world but of the limits of her caregiversâ€™ abilities, interest, intuition, and creativity. We had found the edges of their capacity, not Mâ€™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 Iâ€™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 sheâ€™d cleared in spite of everything, M was a bloominâ€™ 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.)