Raising Blaze

by Debra Ginsberg

  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?

  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, eithe
r. 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.