Raising Blaze (7 page)

Does not understand the process of lining up and following other children or keeping same place in line (runs ahead of others when placed in line).

Would not sit on his name spot.

Had difficulty accepting limits; he wanted to eat another cracker and asked repeatedly for a cracker although he was told that it was not time to have a cracker; repeatedly tried to pull a chair over to get the crackers down from the shelf in spite of clear statements
“No, you may not have a cracker.”

I laughed about the crackers in spite of myself. To me, pulling out a chair and trying to reach the crackers sounded like good problem-solving—something Blaze hadn’t exactly excelled at since. I could just picture the Ice Princess having a meltdown over the sheer irregularity of it all. But I was curious about the rest. Dr. Roberts, the Ice Princess—even Sally—had always maintained that Blaze was unaware of his actions and unable to control his behavior. By that point, Blaze had demonstrated a vaultlike memory many times over so I wanted to know how much of kindergarten he remembered and what details
were prominent in his recollections. I asked him to tell me about that year.

“Well, Mom,” he began, “you know kindergarten wasn’t exactly the best time of my life. I don’t really want to talk about it.” I knew this better than anybody, but I urged him to continue.

“I hated lining up,” he said. “We had to line up every day, all the time, for everything. Always lining up. I wouldn’t do it. I hated it. The teacher read us a story every morning and we all had to sit on our names in the circle. I didn’t like sitting on my name, either. There was a better place to sit on the carpet near the playhouse. I got put in time-out. Dr. Roberts came in and then I had to go sit in her office.” He stopped and took a breath. “I don’t want to talk about kindergarten, Mom.” I didn’t make him continue, although I was sure that if I pressed him, he could have come up with a few more tidbits, especially in his memories of the Ice Princess which, I knew, were almost as fond as mine (“I really hated her, Mom, she was the evil character of my school”). The point was that he remembered it all and was conscious of his behavior at the time. I’d always suspected as much but this knowledge hadn’t helped either one of us when Blaze started school. The classroom is the one place where Blaze has always kept his talents well hidden.

Of course, I knew none of this at the time and had no experiences with which to compare Blaze’s entry into public school. After he’d been in school for a few months, I didn’t even know what was normal behavior for a five-year-old boy anymore and had to rely on Dr. Roberts and Sally to tell me. I don’t think I’ll ever really be sure whether Blaze’s behavior that first day warranted his immediate transfer into special ed or if that transfer precipitated other behaviors that really were worthy of a special-ed classroom. It’s a chicken-and-egg conundrum that will likely never be solved for me.

As Blaze came to the end of his first year and we headed into the start of the second, I started looking outside the school for some
answers as to why he didn’t fit into the expected classroom mold. This would mark the real beginning of our journey and an entry into the world of doctors, specialists, medications, and diagnostic labels. By the end of that first year too my father had changed his instructions for performing at school. Instead of “Give your teachers what they want” he told Blaze, “Pretend you’re like everybody else while you’re in school.”

In my heart, I knew that my father’s advice was tailor-made for Blaze because the one thing I
was
sure of was that Blaze really wasn’t like everybody else. I could even see it when I dropped him off at school and came to pick him up. Around the other kids, he even looked different, less solid somehow, as if his physical body wasn’t quite all there. To me, Blaze looked like a character from one of the old
Star Trek
episodes who was in the process of being transported to a new planet. He looked as if he hadn’t quite beamed in all the way, as if there were still parts of him floating through space. I’d leave him at school and he’d smile at me, watching me as I left, waiting patiently, I assumed, for transmissions from the mother ship.

M
y relationship with those in the medical profession has long been an uneasy one. This stems partly from my parents, who have never liked or trusted doctors and have always had serious misgivings about the way most doctors practice medicine. My mother and father both had negative associations with the medical profession based on their own experiences and have never forgiven or forgotten. My mother had a grisly tale of a nearly botched tonsillectomy when she was a child. After the death of his own father in one, my father viewed hospitals as places where people went to die, not recover. An obstetrician pressured my parents into inducing labor when my mother was pregnant with her last child because he was afraid an approaching snowstorm would make travel to the hospital more difficult. My parents acquiesced and my sister was born a few hours later, not quite ready to come out, with a slightly underdeveloped liver that required two extra days in the hospital. Without ever explaining why, a series of gynecologists tried to convince my mother to have a hysterectomy after the birth of her last child. She was told that she would regret not having the surgery. Terrified, my mother got as far as the preoperative suite before climbing off the table and checking herself out of the hospital, never to return.

When I was growing up, my parents transferred many of their misgivings to my siblings and me. Aside from clinic visits for immunizations, none of us ever visited a pediatrician. I didn’t go to a doctor for a physical, sick call, or checkup until I was an adult. My sisters and brother followed the same course. None of us took antibiotics until we were in our twenties. Most of us didn’t even know what antibiotics
were
until then. My father’s attitude was always clear. “Doctors are like mechanics,” he used to say. “If you take your car to a mechanic, he’ll find something wrong with it and if you go to a doctor, he’ll find something wrong with
you.
That’s his job.”

Both my parents also believed that most ailments could be controlled by attitude and neither one of them was particularly tolerant of colds, flu, sprains or the like. “Get over it,” my father used to say. “Stop coughing.” I realize this sounds a little draconian in the telling. It wasn’t. My parents would never have denied any of their children medical attention if we needed it and we knew that. (When my brother had appendicitis, he went immediately to the hospital and when my sister fell out of a tree, nobody stopped on the way to the ER to question whether her leg was really broken.) However, we weren’t about to get extra attention and coddling if we got sick. My parents saved positive reinforcement for getting better or beating a cold before it turned into a fever.

Long before it became trendy, my mother started exploring alternative methods of healing. Our kitchen cabinets were always stocked with homeopathic remedies, essential oils, and vitamins. She is the only woman I know who gave herself mustard plasters for catarrh (and honestly, who even knew what catarrh was?). Doctors, clinics, and hospitals were always a last resort.

By their own admission, my parents were extremely lucky. Out of five children, there was only one broken leg and one appendectomy. In retrospect, this kind of health record seems nothing short of a miracle to me. Of course, growing up, it didn’t seem like a miracle; it seemed
normal not to be sick and not to trust doctors. Blaze changed all of that—not just for me, but for my entire family.

From the outset, Blaze had odd medical issues that required trips to, and conversations with, pediatricians and specialists. These began with the drama of his birth and the series of inconclusive tests. I was constantly on the verge of weepy hysteria the first few days of Blaze’s life and didn’t question much of what the nurses and pediatricians were doing. I just wanted to get my baby home. When he was finally released, looking no worse for the wear, I assumed that Blaze would need no more medical supervision than I had as a child. I was further off the mark than I could have imagined.

When Blaze was four weeks old, I got a call from his pediatrician who said she wanted to discuss some test results with me. Please, I begged her, it’s not anything bad, is it? Please, tell me it’s not something bad. No, nothing terrible, she assured me. Did I remember Blaze taking the PKU test? Of course I didn’t. He’d had so many tests, it was impossible to recall this one. Patiently, the pediatrician explained that the PKU test was given to all newborns at birth and then again at two weeks and it screened for some congenital abnormalities. Too frightened to speak, I looked over at Blaze, rolled up in a blanket and tucked into his straw carry basket. He was chubby and healthy and gorgeous. There couldn’t possibly be anything abnormal about this baby. One of the things the PKU screened for, the pediatrician continued, was hypothyroidism, or low levels of thyroid hormone in the blood. Congenital hypothyroidism could result in mental retardation, she explained, but it was treatable, so the test was an extremely important one. She barreled ahead, not giving me a chance to react to this information. Blaze’s test had
not
shown significantly low thyroid hormone, she said, but his levels were not as high as they should be. In fact, she added, the levels were exactly on the borderline between normal and low. After delivering this piece of news, she stressed that I didn’t need to worry, that he was still just in the normal range and that before she
did anything she’d like to test him again in case his birth trauma or some other testing glitch had affected the outcome.

I hung up and stared blankly at the wall. The test was wrong, I repeated to myself. The test was wrong. Consciously, I believed this, but on a deeper level I suspected that this simple test might only be the beginning, that Blaze and I were not going to get off so lightly.

Blaze began what would be an endless series of diagnostic tests. Extracting blood from him proved to be an almost insurmountable challenge for even the most skilled pediatricians in the hospital. Blaze’s veins were buried beneath his baby fat and refused to yield to the assault of a needle. His doctor tried veins on the hand, wrists, arms. After thirty minutes of this, Blaze was a screaming pincushion and I had bitten tiny holes in my lip. The doctor looked pale.

“I’m sorry,” she said. “I think I’m going to have to try his neck. You might want to wait outside.”

“No,” I told her. “I’m not leaving him.”

I watched as the doctor and several nurses held Blaze down on an examining table and tipped his head back so that his neck was exposed. To me, he looked like nothing less than a sacrificial lamb being readied for slaughter. Blaze was crying so hard he was almost choking. The pediatrician prodded his neck with her finger for a moment and quickly slid a needle into what I assumed was his jugular vein. Terror produces no tears and so I remained dry-eyed and trembling. At the same time, watching this horrific tableau, I realized that if I hadn’t allowed this procedure, it wouldn’t be happening at all. There were things Blaze didn’t have to suffer, I decided, and it was my job to figure out what those things were. I was his mother. He couldn’t say no but I could. I would never have felt so empowered for myself, but the total trust and dependence on me that Blaze had was inviolable.

“I hate to have to do it that way,” the doctor told me after she was finished and Blaze was returned to my arms.

“Have you taken blood from the neck often?” I asked.

“Once,” she said, cheerfully.

“I don’t want to do that again,” I said. “We’ll have to find another way.”

“I agree,” she said and made a notation on Blaze’s chart. It said,
Difficult Draw.

After three separate blood tests, Blaze’s thyroid levels remained exactly where they had been the first time, on the border between low and normal. Blaze’s pediatrician and the pediatric endocrinologists at the hospital were stumped, unsure what was causing the low levels and why they didn’t move in either direction. We’ll keep testing him over the next few months and see what happens, they said. When Blaze was seven months old, the doctors advised me to start giving him synthetic thyroid hormone, “just to be on the safe side.” My parents advised against it.

“Don’t give him hormones, you don’t know what they can do,” my father said.

“I don’t know what
not
giving them will do, either,” I told him.

“You can’t trust these doctors,” my mother said.

“I have to trust them,” I told her. “At least a little.”

Finally, we struck something of a compromise. I agreed to take Blaze to a naturopath my mother had found. Although he seemed reasonable enough, I didn’t have much faith in the naturopath and it wasn’t because he wasn’t an M.D. I told him the results of Blaze’s blood tests and he suggested I take thyroid hormone from a natural source and Blaze would get it through my breast milk. I had all kinds of problems with this. The first was that there was no way to measure the amount of hormone Blaze would receive this way and the second was that the “natural” hormone came from actual desiccated thyroid. Forget it, I told my mother. You eat somebody’s dried-up thyroid gland; it’s not for me. I put Blaze on the synthetic hormone and his
next blood test showed normal levels. I was advised to follow up regularly with a pediatric endocrinologist as Blaze would likely need to keep taking the hormone for a long time. But what was it that could cause this kind of thing, I asked. Heredity? Genetics? Blown over fallout from Chernobyl? Would there be long-term effects? What would they be?

Don’t worry, I was assured. Everything looks good. Could be any number of factors contributing, but it doesn’t matter. Don’t worry. Don’t worry.

In March of 1990, when he was almost three years old, Blaze developed a series of colds accompanied by a constant dry cough, wheezing, and struggling for breath. The symptoms got a little worse each time he got sick. I took him to a pediatrician, but she wasn’t particularly helpful. She wrote me a prescription for Ventolin syrup, which sometimes helped but often didn’t. Blaze always seemed to get the sickest in the darkest, most unforgiving hours of the night when there was nobody to call and no buffer between me and my fear. I’d spent many moments cataloguing my sins and making wordless promises to God at two and three o’clock in the morning while Blaze lay next to me, feverish, wheezing, coughing. Just let him get better. It was every mother’s midnight prayer. Just let him get better and I’ll do anything.

I hated to leave him at all when he was sick but I had to work. I was a waitress and a day off meant no pay. A few days off translated to a loss of seniority. Other waiters would start getting the night shifts and I would get demoted to lunches. There were no “sick days” in this restaurant and sick kids didn’t count, either. I was the only waitress working there with a child and one of very few women working the dinner shifts. It wouldn’t take much time off to change this exalted status permanently.

One particularly cold, windy night, I arrived home from a long dinner shift to find Blaze lying on the couch with Maya, gasping for air.
He was sucking his chest in and out with short, tortured breaths and couldn’t even hold enough air in his lungs to speak. He was whimpering and seemed totally exhausted.

“I’m really worried,” I told Maya, but this was a lie—I was terrified. I called my father, waking him.

“Blaze needs to go to the hospital,” I told him.

“Are you sure it’s that bad?” he asked me. No, I told him, it was much worse than that. My father, hater of hospitals, intolerant of illness, took one look at Blaze when he arrived and said, “Which emergency room is closest?”

On the way to the hospital, I held Blaze close to me in the backseat of the car. I could feel his small heart beating wildly and the warmth of his little body through his sweater. I tried to send strength through my arms to him and tried not to let my fear seep through to him. I held my breath and let it out, trying to breathe for him. If only it were me, I kept thinking, I could handle this if it were me. I would have some control.

The emergency room was a bright rush of sounds. Blaze was immediately given two injections of epinephrine. His arms and legs went rigid and he cried out. A cluster of technicians crowded around him, stringing wires and tubes. I tried to get close to him to take his hand and tell him it would be all right; I was there, but he couldn’t hear me above the din of voices and equipment.

“He’s in pretty bad shape,” the on-call pediatrician told me. “We’re going to have to transport him to the children’s hospital. He’s definitely not going home tonight.”

I searched my father’s face for reassurance and he said, “He’ll be okay. They know what they’re doing.”

I was not allowed to ride with Blaze in the ambulance that took him to the children’s hospital. It was two o’clock in the morning and a light rain had started to fall. I watched the paramedics load my child into
the ambulance and close the doors and I felt like my insides were falling out right there in the parking lot. It was a sickeningly familiar feeling, just like the one I had when Blaze was born and I had to leave the hospital without him. Since then, he had never been alone with anyone who wasn’t family.

I couldn’t hear my father’s words of comfort as we followed the ambulance on the freeway. I kept thinking, he’s only two. He’s only two years old.

In the early hours of the morning, the light in the children’s hospital had an eerie, pale green glow. The sound between the walls was that of tender, muted grief. There were fuzzy bears and colorful posters everywhere, but they couldn’t make up for the total absence of cheer. I followed Blaze to the intermediate care unit where he would stay until the doctors could determine whether he needed a bed in the regular ward or in intensive care. Both Maya and my father were showing signs of exhaustion so I told them to go home. It was only me then, peering over a crowd of doctors, trying to catch a glimpse of my son. A specialist entered the room briskly and asked, “Is this the asthmatic baby?”

This was the first time I had heard the word
asthma
and I was stunned. Is that what it was? Asthma? Why didn’t I know that? What did I forget to ask? What else didn’t I know?