Raising Blaze (8 page)

I didn’t have time to voice any of these questions because I was quickly hustled off to the main office to discuss insurance and how I would be paying for Blaze’s treatment.

“I really need to get back to my child,” I told the automaton in the office. “Can we discuss this in the morning?”

“I understand that this is difficult,” she told me, “but we do need to discuss the financial aspects of your son’s care. Where do you work again?”

“I’m a waitress,” I told her. “I work in a restaurant.” I was still in my work clothes; black pants, black tie, and white shirt. The night’s tips
were folded into my front shirt pocket because I hadn’t even had the presence of mind to move them into my purse. I smelled like roasted duck. I didn’t want to be discussing “financial aspects” with this calmly efficient woman while my son was struggling for each breath he took, but I had to hand it to her—for a moment she actually got me distracted and I started thinking about money and visualizing the huge sums that were already accumulating. I wondered where the hospital found people to work in the middle of the night asking distraught parents about cash flow. I knew it wouldn’t be high on my list of career choices.

I told her, finally, that I needed to speak to John, Blaze’s biological father, about insurance. I hadn’t seen him since the last ugly scene we’d had in my apartment over two years ago, when Blaze was still a newborn. He didn’t pay child support and we argued every time we spoke. He was still angry with me for having Blaze against his wishes. His anger made me furious and then communication broke down completely. John had moved to northern California before Blaze was even born and I had only a vague notion of where he lived.

When I had moved from Oregon to California eighteen months before, the district attorney’s office had sent John a letter demanding he pay me $275 a month and provide health insurance for Blaze. John had been enraged and called me, screaming that he couldn’t possibly afford such a sum and, besides, I had no right to demand it of him. No right at all! Did he ask for this kid? This was
my
decision.
I
was the one who wanted a baby and now I had one and goddamn it if he was going to pay for that decision. If I persisted in making him pay it, he yelled, he would take full advantage of his parental rights and start taking Blaze on holidays and summers and weekends and who knows when else. All of this was highly unlikely, because he lived six hundred miles north and lacked even the slightest inclination to interact with his son, but his fury was enough to terrify me into agreeing that I would write a letter to the district attorney’s office and drop the case. Just please
send me something, I asked him, and please provide health insurance. Without health insurance, I would be headed toward social services and I didn’t think I could stand to go through that. John agreed to this and I wrote the letter. He never sent any money and I hadn’t heard anything about insurance for a while. It was possible that he had it but I wasn’t sure. I wouldn’t know until I called him. This was what I told the woman in the financial office, hardly believing that I could spill these ugly details all over her nice, neat desk. There was no cause for worry, though. After my tirade, she merely looked up and said, “Is your son’s father employed? Do you have his employer’s address?”

By the time I returned to Blaze’s room, he had been infused with a cocktail of anti-inflammatory drugs, including theophilline and prednisone. He was lying in a large crib, wrapped in wires and monitoring devices, crying that he wanted to go to sleep. The drugs were keeping him awake, a nurse told me, but he would be able to rest more comfortably soon. I reached my hands through the bars of the crib and stroked his head, trying to soothe him.

“It’s okay,” I told him, “I’m not going anywhere. I’m going to stay right here with you.”

“Lie with me,” he whimpered.

“He wants me to lie with him,” I told the nurse. “Can I get in there with him and hold him? I think it’s the only way he’ll be able to sleep.”

The nurse looked at me quizzically. “Well, I don’t know,” she said. “You’re not really supposed to be in this room at all. We don’t have beds for you in here.” I stared at her, daring her to try to make me leave. I’ll scream, my eyes told her, and I’ll throw things. I won’t leave. Perhaps she could sense this because she said, “But, I guess…well…poor thing. All right, go ahead and get in there with him. But don’t tell anybody I let you.”

Climbing into the hospital crib was quite a feat, but I managed to get next to Blaze and curl around him, tucking him into the hollow of
my body—wires, equipment, and all. This was how Blaze had taken naps almost every day of his life, tucked into me, my arms around him, ready to catch him as he fell into sleep. After whimpering and wriggling for a while, Blaze was finally able to drift off. I held him tight, the aftereffects of too much adrenaline keeping my arms rigid. My thoughts were loose, muddled, and edged with anxiety and fear but holding him next to me like this, I felt, finally, like I might have some control over our fate.

Dawn came sneaking through the room and I could hear two nurses whispering to each other.

“Mom’s in there with him,” one of them said. “Can you believe it?”

“How did she fit?” the other asked.

“I don’t know, but it worked. He’s sleeping now, poor thing. He was only saturating eighty-five percent on full oxygen when he came in.”

“Mm-mm. Poor little thing.”

I was suddenly so grateful for these two nurses and the moment of sheer comfort their words gave me. Their concern made a soft pillow to lean into after a terrible night and I found safe harbor in their voices.

Blaze remained in the hospital for almost a week. I spent the time sleeping in fits and starts next to his bed, calling work to tell them that I wouldn’t be in again tonight, and questioning doctors, nurses, and respiratory therapists. I learned everything I could about asthma and cursed myself repeatedly for not realizing that my own child had this illness in the first place.

There was a free phone in the upstairs lounge. From there, parents could call anywhere in the world at no cost. There was a certain irony in this, I thought. Where is there to call and who is there to speak to when your child is sick in the hospital? If the line extended to heaven, it would be one thing, but to call someone in Zambia just to chat…

I used the free phone to call John and find out about the insurance. It was a horrible conversation because I couldn’t keep from crying and
he seemed totally unmoved on the other end. Not that I really wanted him to be moved; I just wanted some kind of relief. I wanted to think that maybe, at some point, somewhere, I could shift just a fraction of my load to someone else. John was obviously not that person, but then again, that didn’t come as much of a surprise.

“Oh, I had asthma as a kid,” he said. “Yeah, really bad. I was in the hospital a lot. Is he allergic to olive trees? That was my problem.”

“You had asthma?” I asked him. “That would have been nice to know beforehand.”

There was silence on the other end. He was pissed off again. I asked him if he could think of any other medical issues that he might have passed along to Blaze, but he stonewalled me. There was so much information I was missing, I thought. How long would it take to learn everything? At least, I found out, John had finally added Blaze to his insurance. It was an afterthought, he told me, but a pretty lucky one in retrospect. He asked me for all of Blaze’s information to give the insurance company because he didn’t know the correct spelling of Blaze’s name or his date of birth. I wanted to hurl epithets through the phone but I didn’t. I merely recited the data and hung up.

John wasn’t the only one holding back on information. I couldn’t seem to get any straight answers from the doctors, either. Every one of them had a different angle on what the causes of Blaze’s asthma were and how best to manage it. One doctor was convinced that allergies were to blame and told me I should take him to a specialist to figure out what those were. Another, swayed by the results of Blaze’s chest X rays, told me that he had pneumonia and that was what was responsible. I asked if asthma was hereditary and the doctor told me it wasn’t. Then why do medical questionnaires always ask if there is asthma in the family—which I now know there is? I asked. It’s probably not hereditary, the doctor repeated. Blaze’s original pediatrician, the one who sent me home with Ventolin syrup, was on rounds at the hospital and stopped in to see him. She asked me if Blaze had been tested for
cystic fibrosis, her question sending me into an immediate, choking panic. None of the doctors seemed willing to tell me anything other than bare essentials. It was as if they felt I simply didn’t need to know. I was supposed to feel some sense of security with these professionals surrounding me, but I didn’t. I felt alone and ignorant and I started losing my ability to trust them at all.

Maya and my father came to visit and bring me food and changes of clothes. My mother was out of the country, attending her father’s funeral in South Africa. My father knew I hadn’t slept, knew that I went to the hospital rest room regularly to cry.

“I know how hard this is for you,” he said. “I wish you could share this with a partner or a mate, but what can you do? You are strong enough for this. If you weren’t, Blaze never would have chosen you as his mother. Think about it. There is a reason that you are his mother.”

After five days in the hospital, Blaze was thin and pale. He wouldn’t eat anything served off the scary institutional trays and I was forced to spoon-feed him soup brought from home. He didn’t even trust ice cream because the nurses crushed bitter steroid pills and sprinkled them on top. He became stoic and silent. When I walked with him down the halls, trailing his little tank of oxygen, I could see his ribs showing through the gaps in his hospital gown. He looked at me with big, sad eyes, and I saw no joy there, no will to keep going. He was checking out, I realized with horror. I had to get him home before he faded away altogether.

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.