It took excessive wheedling on my part to convince the doctors that Blaze wouldn’t improve any further in the hospital, but I was finally able to get him released. I was sent home with a stack of instructions, the portion of the bill not covered by insurance (I calculated that it would take at least two years to pay it off), and enough drugs to stun a team of oxen. Blaze was very quiet when we got home but he was breathing. I didn’t know how long it would take for him to recover fully and become the fat happy toddler he was less than two weeks before. I took him in my arms and held him, free, finally, of the wires, tubes, and oxygen.
“I’m sorry,” I whispered. “I’ll never let that happen to you again.”
Blaze’s hospitalization shook me deeply. It wasn’t his asthma that disturbed me as much as my own shocking ignorance. After all, I reckoned, asthma wasn’t some weird endocrine thing involving mysterious hormones and blood tests, it was extremely common. I hadn’t been paying attention and had let my own medical prejudices blind me to symptoms that should have alarmed me. The worst realization was that I hadn’t asked enough questions of Blaze’s doctor before he wound up in the hospital. Perhaps I could have prevented it if I had known more. I became vigilant about monitoring Blaze’s health. He seemed very weak after he came home from the hospital and it took him months to fully recover his vitality.
My father asked, “He’s not going to become one of those sickly kids, is he?” which I interpreted to mean, “You’re not going to coddle him and make him want to be sick, are you?”
My mother told me that I could help him by using natural methods and diet. “You shouldn’t give him all those harsh drugs,” she said. I told her I wasn’t about to wait for him to quit breathing while I waved burning sage over him, but I tried some alternatives as well as the pills I’d been sent home with. So I cooked cactus (which was supposed to help open bronchial tubes) disguised in spaghetti sauce and I gave him prednisone. I gave him warm baths with oils of eucalyptus and hyssop and breathing treatments with albuterol. I gave him theophilline and massaged his back so he could relax and breathe easier.
Blaze’s asthma attacks got fewer and further between but they still came and they still terrified me. I noticed that each attack was preceded by a seemingly mild cold. I tried to keep him hermetically sealed off and away from viruses but that was hardly possible. A few months after his hospitalization, he started wheezing and I took him to a pediatrician to get a prescription for the asthma drugs.
“We don’t use theophilline anymore,” she told me. “We’ve found that it can build too quickly to toxic levels in children.”
“What happens when it gets toxic?”
“Seizures,” she said. “Brain damage.”
I started researching every drug I gave Blaze after that and I became quite an unpopular parent with all of his doctors. I had too many reservations and too many fears. I asked too many questions and wasn’t satisfied with the answers.
“I wish you parents would stop reading all this stuff about medicine,” one doctor told me after I questioned the safety of the hepatitis B vaccine. “It’s dangerous for your children.”
It was my insistence on questioning everything, however, that told me something was wrong when, at the age of seven, Blaze was still the size of a five-year-old. He had simply stopped growing. Back to the endocrinologist we went for another battery of tests. After almost a year of these, Blaze was proclaimed growth-hormone deficient. Could be any number of reasons, the endocrinologist told me, but most likely it’s his pituitary. We can’t be sure. “Idiopathic etiology,” he said. My dictionary defined this term as a condition of unknown origin which, as far as I was concerned, described Blaze’s condition perfectly.
This time, however, I got lucky. Blaze’s regular endocrinologist, who had a horrible bedside manner with Blaze and spoke to me in small, monosyllabic words as if I were a not-very-bright child, was on sabbatical, bicycling through Italy, when all of Blaze’s test results were completed. The doctor filling in for him understood my need to know as much as possible about growth-hormone treatment and what it would mean for my son. He directed me to a medical library where I could have access to every scrap of available literature on the subject. “Read as much as you can,” he said, “and I’ll try my best to answer your questions afterward.” He knew I would discover that, without growth hormone replacement, Blaze would never grow and would become a “pituitary dwarf.” He knew I would never allow this to happen and he was right. After my own investigation I learned how to give the injections Blaze would need on a daily basis and I started administering them. Blaze grew five inches in the first year.
What I considered this doctor’s greatest gift to us, however, was not his diagnosis, respect for my wishes or even his gentle treatment of Blaze. Rather, it was his response when I pressed him about what could have caused Blaze’s conditions and what effects he thought they might have on Blaze in the future.
“Look,” he said, “there are some things we just don’t know. In fact, there are a lot of things we don’t know. We don’t like to admit it because it makes us look bad, but we are constantly learning. If you’ve read all the literature on this then you probably know almost as much as I do. All we’ve got to work with is what we have now.”
There was liberation for me in his words. I felt I could not only trust myself but I trusted him more as well. I had long relied on my intuition when it came to Blaze, but it was then I realized fully that my intuition alone would never be enough to navigate the maze of doctors, diagnoses, and treatments; I needed knowledge as well. Knowledge, I realized, was a very powerful tool and I planned to use it.
[ Chapter 4 ]
WHAT COLOR IS TUESDAY?
I’m in Blaze’s room, picking up stuffed animals and books, attempting to sort them all by size and shape so that they will fit onto the white melamine shelves on the wall. Blaze sits on the floor, leafing through a Dr. Seuss book, not helping me. This is what we call cleaning up his room. I sort, he watches. His room is fairly small, but then, so is mine. Maya’s bedroom is slightly larger but so packed—with instruments, sheet music, and canvas bags full of things she can’t bear to throw out—it appears much smaller. We have to live compactly in this pink-and-beige stucco condominium. I don’t hang pictures. Tall white walls give the feeling that there is more space here, more room to breathe.
I like it here, despite the space constraints. There are two swimming pools and a couple of hot tubs available to all the residents of this little condo city and we use them all the time. There are narrow little driveways lined with streetlights running between the units. The lights go on at dusk and give a twinkling Grimm brothers feeling to the whole place.
The streetlights are on now and I’m looking out the window, holding something fluffy and red in my hand. I’m not thinking about anything at all, just existing in the peacefulness of the moment. So when Blaze looks up from his book and says, “Tuesday is light blue,” I respond without analyzing his statement first. I picture Tuesday and see it as I have always seen it, a deep indigo.
“It’s dark blue,” I tell him. “Wednesday’s the light blue one.”
“Oh, okay,” he says. He gets up and appears ready to move on to another topic, but I stop him.
“Wait a minute,” I tell him. “What color is Monday?”
“It’s brown,” he says.
“Yes, it is,” I say. “Monday is definitely brown.” I’m smiling now and so is he. I feel like we’ve stumbled onto something big here. This is the first time I have realized that, for as far back as I can remember, I have always assigned colors to the days of the week, months of the year, even numbers and letters of the alphabet. The fact that Blaze does this as well gives me a fresh understanding into the way he sees the world around him. For the moment, I can see what he sees. Blaze is happy about this, too. It’s as if I have suddenly started speaking to him in his native tongue.
“What about Sunday?” he asks me.
“White,” I
tell him.
“Mine is silver,” he says. “What about Thursday?”
“Bluish green,” I say.
“I think it’s more green.”
“Maybe it is more green,” I say, giving Thursday a good, hard look. “But Friday is definitely pink.”
“No, it’s red.”
“Saturday’s red.”
“Mine’s yellow.”
“Hmm,” I say. “What about July?”
“July…” he says, contemplatively. He’s just started first grade and hasn’t had a whole lot of exposure to the months of the year yet. He’s still trying to get the sequence down and so his colors for them are not firmly established. He wants to know all of mine, though, so I share them with him. January is a dark, dark blue; February is an icy green; March is orange; April is peach colored; May is cream; June is royal blue; July is purple; August is gold; September is reddish brown; October is reddish orange; November is gray; December is white.
We move on to the letters of the alphabet. He does have colors for all of those. As he tells me what they are, I imagine words forming out of the letters and realize that when I read, the words have colors too, based on the colors of the letters within them. It has never interfered with my reading. After all, I’ve only just noticed it now. Yet, the words do have color and the color affects their meaning for me. I don’t like to eat cake, but I like the word cake. I like the word because I like the color pink and, for me, cake is a pink word. Part of my love for words, in general, is based on the way they look to me, the colors that they create in my mind.
This information comes to me in a rush of realization. All the while Blaze looks up at me with his big brown eyes as if to say, You’re just getting to this now? It must all seem so obvious to him. Of course Tuesday is blue and cake is a pink word. This is a system that helps both of us order the world, only I’ve never understood it until now and Blaze seems to have known it all along. What’s more, the system seems like a pretty good one to me. After all, who hasn’t found peace and symmetry in color coding? But before I can get too excited about my new insight, I remember something and stop short.
“Blaze, you don’t tell your teacher about the colors, do you?” I ask him. I design my words so that he will understand that telling the teacher might not be such a good idea (You don’t instead of Do you).
He looks up at me and says, “No, Mom. She doesn’t know.”
“That’s okay,” I tell him. “She doesn’t have to know. You can talk to me about it.”
“Okay, Mom.”
Make sure you never tell anyone on the outside about these things that make you different. This is what I’m teaching him, I think bitterly. This is what he needs to know. I spend only the briefest of moments debating whether or not to tell the teacher myself. Maybe she’d find it useful? Interesting? I share Blaze’s unique method of coloring words and letters and I’m all right, aren’t I? Shouldn’t that mean something? But no, Blaze has been in school for two years now and I’ve learned not to share any information with the school staff that might make him seem odder than he is. Sally, the special-ed teacher, is open to listening and the closest to reaching an understanding of my son, but Dr. Roberts and the other teachers start looking concerned, pull out bits of paper and start taking notes. I hate those damn notes.
This newfound information will have to stay between me and Blaze for now. Maybe later, when he’s finally gotten himself secure in school, it will be safe to share these things. In the meantime, there is more territory to cover. I sense that the colored letters are just a tiny piece of Blaze’s unique worldview. There is so much I have yet to learn.
Blaze had his first neuropsychological evaluation when he was five. I didn’t think he needed an evaluation at all, but I took him to avoid appearing uncooperative toward the school staff. It was all right for me to seethe in private, I sensed, but if I let my anger or frustration show, it wouldn’t bode well for Blaze. This was the attitude I adopted for most of Blaze’s first two years of school. I was still laboring under the delusion that he would magically snap out of his resistance to the classroom rules and start exhibiting his innate brilliance. At the same time, I didn’t make any efforts to change him. Despite the horror of his first day, I still felt that my role was to encourage and applaud his individuality. Although I wouldn’t admit it, even to myself, I secretly admired the way he defied authority, something I could never have done myself at any age. He was an innovator and would be a leader one day, I thought, the system be damned.
Midway through kindergarten, the IEP team met again to discuss Blaze’s progress. Although Ice Princess was present, she had little to contribute. She represented the regular-education class and Blaze was still on her class list, but she had very little interaction with him (to her pleasure, I assumed). This meeting was more or less Sally’s show and she had made several copies of her notes for distribution.
Blaze’s classroom behavior is becoming more appropriate at a pre-academic level, she wrote in her report. He is able to sit for longer periods of time without creating a disturbance and participates in desirable group activities like singing, counting, and reciting his address.
(I’d never thought of reciting one’s address as a desirable group activity, but so be it.)
Blaze’s social skills have improved dramatically. He is a friendly child who says “hello” and “good-bye” to teachers and peers. He is able to follow teacher direction, but often chooses not to.
(Well, I didn’t need her to tell me that, but I was glad that she was aware that there was some thought behind his action.)
Blaze no longer demands a cracker for sitting with the class. Staying in school is a strong reinforcer for him. He is highly suspicious of any adult on the phone for fear he will be sent home.
(Poor thing, I thought. The kid likes school. How long before he doesn’t?)
Dr. Roberts hastened to tell me that these signs of progress indicated that the special-ed class was the best placement for Blaze and that he should remain there to continue reaping the benefits. She added that, although Blaze was improving, he was still exhibiting inappropriate behaviors. What kind of behaviors, I wanted to know.
“He leaves class when he hears a garbage truck or another large vehicle in the parking lot,” she said.
“He’s very intrigued by loud noises,” Sally added.
“Is that really so unusual?” I asked.
“It is a problem if it becomes a safety issue,” Sally said.
“Blaze also exhibits very idiosyncratic language,” Dr. Roberts said. “We’re concerned about this.”
“Yes,” the speech therapist said excitedly. “I’d really like to talk about this.”
“Idiosyncratic?” I asked.
“When he’s frustrated, he will say things like, ‘the puppies are on fire,’ or ‘the teacher’s on fire,’ or ‘I’m standing in garbage.’ These are inappropriate responses to his frustration,” Dr. Roberts said in that unshakably calm tone of hers.
“But I know what he means,” I said.
“Do you?” Dr. Roberts asked.
“Well,” I began, knowing that I could be digging myself a nice little hole, “he’s been watching 101 Dalmatians and so that’s where the puppies come in. And fire is scary, so if he’s upset, he associates the puppies being scared or on fire. And when he says he’s standing in garbage, it means that he feels like he’s surrounded by something unpleasant, something rotten.”
There was a silence in the room as Sally, Dr. Roberts, the speech therapist, and Ice Princess stared at me with identical expressions of naked dismay.
“That makes sense, doesn’t it?” I asked feebly.
Dr. Roberts broke the mask her face had become by smiling and said, “It makes sense to you, but you can probably see how it wouldn’t make sense to an outsider.”
“Yes, I suppose I can,” I said, although I didn’t, really. Blaze made sense to me, I knew that. Why would it be so difficult for an “outsider”? Be
cause, I thought grimly, we were the outsiders. I decided to remain as silent as possible for the rest of the meeting.
Dr. Roberts continued speaking, saying that neither she nor Sally had been able to cull any definitive data from the pyscho-educational tests that they’d given Blaze. He remained totally noncompliant when it came to testing, she said, and they didn’t want to give him short shrift by basing their findings on partial results.
“I’ve had a little better luck,” Sally piped in. “He will work for food.” She held out the stash of M&M’s she kept handy and smiled but I was unable to smile back. Her words created a terrible vision in my head. I saw Blaze, many years older, sitting on a freeway off-ramp, holding a cardboard sign in dirty hands that said, Will Work For Food.
“I’d prefer it if he doesn’t get too much of that,” I told Sally. “I don’t like him to eat too much sugar.”
“Oh, it’s not too much,” she said quickly and the smile faded from her face. I thought I detected something wounded in her voice and I immediately felt guilty. I knew she was trying to help and that she wasn’t responsible for my hallucinations of catastrophe.
Dr. Roberts interjected again and asked me if I had thought about getting an outside assessment for Blaze from a psycho-educational specialist or psychiatrist. She said she knew two offhand whom she recommended highly. You never knew what kinds of things a professional evaluation could turn up, she stressed. I might find that there were behavior-management strategies I could use that the school hadn’t thought of or possibly even some medications that might help.
“What kind of medications?” I asked her sharply. “He doesn’t have to take anything for his asthma on a daily basis. He’s fine unless he has an attack.”
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