The Four Walls of My Freedom Read online

  “Well, you should definitely be using bubbles. Children like Nicholas need practice visually tracking a moving object. And when he reaches to pop bubbles that are in front of his face, he will be reaching toward the midline of his body — something that is naturally very difficult for him to do. You must have noticed that his arms are usually bent by his head and arching backwards.” I lowered my eyes and nodded silently.

  I drove home, stopping to buy a plastic jar of bubbles with its potent life-changing possibilities. I blew the whole jar at Nick when we got home and we giggled as they popped.

  In the mail, I received a letter inviting me and Jim to a meeting of Nick’s team at the rehab centre. They would discuss his progress in therapy and announce to us their results of his cognition testing. They would recommend a preschool placement. Nicholas was just over a year old at the time.

  I had begun to understand that meetings about Nicholas took place amongst professionals without me or Jim there. Jim and I arrived an hour early for our “team” meeting. I managed to locate our social worker and in urgent whispers pleaded with her to allow us into ALL discussions about Nicholas. I was afraid of them talking and deciding my son’s fate without us. I had reason to be afraid.

  There was a fish tank in the waiting room and other families waited quietly with us. Some children were much older and sat in elaborate wheelchairs, heads turned, teeth crooked. I still wasn’t quite used to such differences, but I wasn’t staring. I felt anxious and breathless in this atmosphere of inertia. I scanned the hallway behind me for activity of familiar faces; I tried to peer into the boardroom window to see if our “team” was meeting without me. Lynn, our social worker, finally swept around the corner and apologized for the delay in proceedings. She ushered Jim and me into the boardroom to greet seven frozen half-smiles. Something felt terribly wrong. Each therapist was asked to review Nick’s progress or lack of it and I noticed that Lynn was concentrating on her notes. Everything they said seemed to be truthful enough until: “We find that Nicholas is profoundly delayed. We recommend that he goes to a preschool operated by the Ottawa District Association for the Mentally Retarded.”

  I looked around the room. There were two doors, one leading back into the waiting room and another leading to a hallway on the opposite side. So they had already conducted Nicholas’ case conference without me and Jim. At the end of their private meeting, Lynn had walked out the back door of the boardroom, around the corner to the waiting room and now she wasn’t looking me. I felt my face hot, it was hard to swallow. “I am one of you!” I shouted silently. “I am on this team!” I shook some nonexistent stray lock of hair off my forehead, breathed deeply into my nostrils and began. “Nicholas is a very bright boy, exceptionally bright, in fact.” The occupational therapist, head tilted and looking miserable and desperately sad, whispered, “Is there an example of that you can tell us about?” I was beaten, cheated and I knew it.

  We went to have a look at the brand-new Cumberland Hub Preschool about half an hour outside Ottawa. Moira was the petite, gentle, redheaded director who greeted us. Nick’s classmates would be other children with severe physical and mental disabilities. There was a boisterous gang of children with Down syndrome, but they were kept separate from our little group. Nick’s classroom was sunny, warm and quiet, except for some soft classical music playing in the background. Moira exuded reassurance, competence and kindness. I knew that destiny had nudged me through these doors and I knew it was the best place for my baby son who still couldn’t manage any kind of sudden noise. Still, I knew he wasn’t mentally challenged and I resolved to defend his intellect at all costs.

  In times of trouble, my principal survival tool is my telephone. Around the time of Nicholas’ diagnosis, I rifled through the Yellow Pages searching for information and assistance for our family. I had telephoned every listing under Associations, Societies, Institutes and Foundations. I even rang up the Opimian Society and made a note of their number when I was told it was a club for wine lovers. I might need it some day! Who knew what the future held? But when I discovered the Easter Seals Society, I realized that I had struck gold.

  They sponsored a Parent Participation group that held regional as well as provincial conferences for families to exchange experiences and information about their children who had physical disabilities. Here, one could advocate for political change. In those days, Easter Seals had money to fly us out of town for the province-wide conferences. I was severely sleep-deprived and emotionally exhausted, but as I chatted with other parents, my hunger for sharing and listening overcame all bodily concerns. I explained to another Ottawa mum how Nicholas screamed during the night.

  “My daughter Carey did that until she had a surgery to correct reflux,” she said. I was riveted. I knew that Nicholas had this self-same diagnosis of esophageal reflux and that he spat up many times every day. It never occurred to me, though, that all the sour milk on my shoulders could be the cause of his nightime distress.

  “There’s a young doctor at the hospital who did a study on this new surgery and how it can help our kids. Yes, and when they opened my Carey up, they told me she was full of it, just full of it!” Years later, I wondered what exactly the surgeons had found in Carey’s chest. In that tidal wave of hopefulness, I had forgotten to ask.

  The young, bespectacled doctor greeted us earnestly. As he began to explain his understanding of digestive difficulties, he crackled with the enthusiasm of a science fair prizewinner. I told the doctor Nicholas’ story and he inquired about Nick’s spit-up habits. On cue, I felt a familiar warm ooze on my shoulder. “Oh, I think we have a perfect candidate for this procedure right here!” he declared. I remember feeling so optimistic. I remember thinking that modern medicine and the power of love could “beat” the effects of cerebral palsy. How wrong I was.

  While Nicholas was in surgery, Jim and I passed the hours in the surgical waiting room. Time dragged on and, finally, we decided to wait near Nick’s bed on the ward. Another hour passed and I asked the nurse in charge if she could find out when Nicholas would be back with us. It was dusk now and she said that Nicholas was in recovery, but was “breath holding” so they were keeping him a little longer to monitor the situation. Twenty minutes later, a nurse and an orderly appeared down the hall wheeling a cot towards us. Inside was Nick, his mouth open and rigid, eyes wide with panic. He gasped, writhing, and exhaled a hoarse cry. He was in the room now, and we hovered like birds, flapping uselessly.

  That night was the first, but not the last, time that I saw in my son’s eyes a terrible pleading. I turned away and put my hand down on the corner chair to support myself from falling. Jim warned, “Donna, you can’t do this. Come here!” I came back to Nicholas, murmuring apologies through tears. A nurse showed us how to hold the oxygen mask over Nick’s face and at first he did calm down a little. The surgical resident stopped outside the door to glance at the chart and strode in. He was short with thick, black curly hair and a great deal of self-confidence. He made some inquiries about Nick’s breath holding and left the room. Moments later, an awful spasm gripped Nick and we again struggled to help him breathe and relax his tiny body. His chest was bandaged where they had cut from sternum to navel and then opened his rib cage. They had inserted a feeding tube to the left of the scar that protruded like a rubber asp. It’s a Foley catheter, they explained, the same as ones used for urinary purposes. It seemed huge and was sticky to the touch, an awful pseudoflesh colour. Nicholas was desperate by now, in a cycle of pain and spasm. I shouted for the nurse to help and she confided quietly that in her ten years of nursing, she had never seen a child in so much pain. As she whispered to me, the young doctor who had recommended the surgery walked in, registered the fear in our room and turned on the lights. He examined Nicholas, asked some questions about Nick’s breath holding and told us that he was transferring our boy to intensive care immediately.

  As we hurriedly packed up Nick’s things, his ba
bysitter came through the door, smiling and holding the string of a huge happy-faced balloon that trailed behind her. The balloon had accordion legs and paper feet that made it “walk.” With its cartoon grin, it seemed mocking and ridiculous. Lise tried to smile and chat cheerfully. It was as if she had rehearsed this scenario and had no idea how to veer away from her carefully prepared script. Later, I found out that she had been quite traumatized, never having witnessed such horror before in her young life.

  In intensive care, Nicholas continued to suffer spasm and difficulty breathing, but it was not quite so bad with the stronger drugs on offer there. A little parent room down the hall was meant for use by neonatal intensive care mums and dads. But luckily, the room was empty and someone had abandoned a crumpled sheet on the sofa. I curled up inside the sheet and dozed off for a couple of hours. I staggered back into the blinding light of the treatment bays and to my baby boy, all wires and quiet beeping. He began to stir and I held his head, trying not to touch his swaddling bandages, by now with patches of brownish blood showing through. I sang “You are my sunshine, my only sunshine; you make me happy when skies are grey…” Suddenly a loud voice interrupted my intimate reverie with Nicholas. It was the curly-haired surgical resident. He moved towards us and barked, “What are you doing here!”

  “I beg your pardon?” I asked dumbly.

  “Who told you to leave the ward and come to ICU?”

  I stared, fascinated, at a vein in his neck that was throbbing.

  “The recommending consultant told us to come here. He arranged it.”

  “That doctor is NOT your doctor, I am! Your son is on the surgical team and I AM the surgeon in charge!” I might have laughed at this young underling’s puffed-up ego, but instead I turned back to Nick and ignored him. The doctor swept out of the room in a swirl of indignation. I felt oddly disembodied and slightly amazed at this man’s poor manners. I resumed my song, “You’ll never know dear how much I love you, please don’t take my sunshine away.”

  Official reports reflect so little of human drama. Here is what was written on Nicholas’ discharge summary: “The patient was admitted to the hospital and the next day was taken for operation Nissen fundoplication and Stamm gastrostomy. He tolerated the procedure without complication. He was admitted to Pediatrics again and patient was having spasmodic attacks. The parents were very worried, so he was brought down to ICU for further management for his pain. A consultation with the gastroenterology physician regarding the problem was done and he suggested to continue the patient on Lorazepam and Demerol.”

  Days later, a specialist feeding nurse took me aside to show me how to use the feeding tube. There was a plastic bag with a length of tubing protruding from one end, plastic syringes and a radio-sized electric feeding pump. The nurse explained that I must wash my hands with Zest soap before beginning the preparation. She showed me how to prime the length of tubing without flooding the tiny drip chamber. Next came the demonstration of how to fit the chamber into a slot in the pump, lock it in place, and then program the pump with the desired drip speed, total dose and total volume. Finally, she showed me what to do if Nicholas felt sick. “He will retch, but won’t be able to vomit except out of his tube. You can just let his stomach contents drain into a kitchen cup if he feels unwell,” she said breezily. I was still wondering about the Zest soap, but I must have nodded my head to register an acceptable level of comprehension because after teaching me how to clean the tubing with dish soap, clear water and finally white vinegar, she exited the room, leaving me to pack up all the mysterious equipment. Just before leaving for home, a patient copy of the discharge note was thrust into my hand. The contact details for the nutrition specialist were pointed out to me in case of emergency. It was a number that I would come to know better than any other.

  None of us knew then that when reflux is caused by intestinal incoordination below the stomach, preventing reflux by capping off the esophagus is like capping an active volcano. Nicholas began to retch as we turned into our driveway. Nick’s feeding tube was inserted into his abdomen through a piercing in his tummy. A small, water-filled balloon that lodged against the lining of his stomach prevented the tube from popping out, much like the back of an earring stud. I would mix powdered formula with water, then decant it into a plastic bag attached to a long tube. I primed the tubing as I was instructed. The pump was similar to an IV pump and could be programmed to dispense the correct amount of feed over a period of hours by dripping slowly through a chamber in the mechanism. Nicholas continued to scream often throughout the night and one night, about eleven o’clock, I heard a quiet but unnatural coughing and choking sound from his room. I ran into Nicholas’ bedroom and turned on the light. Nick was retching violently and struggling to breathe. Instinctively, I went to turn off the pump, but the feed bag was empty. Almost a litre of formula had disappeared. I struggled to comprehend how a feed meant to drip slowly over eight hours could be gone in under half an hour — I had only started the pump minutes before. As my eyes scanned the length of tubing, a terrible realization dawned on me. I had connected the feed, but forgotten to wind the tubing around the pump mechanism, so all the formula had raced through the tubing, unimpeded, by gravity. I pulled apart the coupling and the pressure in Nicholas’ stomach caused his Foley catheter to snake wildly, spraying the ceiling with formula. “I’m sorry, Nicholas, I’m so sorry,” I sobbed. I held him, rocking, as we both wept.

  Aside from the effects of my exhaustion, Nicholas was suffering from a strange set of recurring symptoms, known to me, but inexplicable by all the science at our disposable. After a change of his Foley catheter, he would be all right for a couple of weeks. One day, he would retch maybe a couple of times and this behaviour signalled the start of a total intolerance of anything in his stomach, including water. I began to predict how many days it would be till even a teaspoon of water would cause bilious vomiting. In hospital, Nicholas would remain on IV fluids for three or four days, followed by the slow introduction of clear fluids and half-strength formula. Even though there was never anything functionally wrong with the catheter, often a change to a new one would cure his misery. All of these symptoms were a great mystery to me and to Nick’s physicians.

  Despite numerous hospital stays and a myriad of tests, Nicholas continued to be very ill and unable to digest his formula. In July 1992, his nutritionist wrote: “Nicholas has significant problems with gastrointestinal symptomatology including episodic retching, vomiting, pain and ongoing severe constipation. We have tried various motility medications and antacid medication with only limited success. His gastrostomy [feeding tube] appears to be utilized to provide between 30–50% of calories when he is relatively well and will provide more calories and fluid when he is having difficulty.” Most of the time, Nicholas was having “difficulty.”

  Nicholas turned two years old on August 30, 1990. Four days later, early on September 3, rain pelted down as a yellow schoolbus pulled up in front of our house. I remember one thing: standing in my doorway, waving, looking at his little face through the foggy bus window. His head was tossed back, his mouth open in a scream I couldn’t hear. I waved and blew kisses, thinking, “My God, what am I doing letting him go off like this?” And then, “How wonderful to have quiet, coffee, a newspaper!”

  At 10 a.m. that same morning, the telephone rang. It was Moira, the school director at Cumberland Hub. “Now I don’t want you to worry, but Nicholas is in an ambulance on his way to Children’s Hospital. We think he has had a seizure. He fell asleep in his wheelchair and we couldn’t wake him up. We called the fire department, you remember it’s just across the street…they couldn’t wake him up either. I told the ambulance driver that you would meet them at Emergency.”

  Driving while sobbing isn’t easy, especially on a rainy day. But I managed to arrive at Emergency before Nicholas. I waited, imagining him on a stretcher, eyes rolled back with horribly jerking limbs.

  I heard him befo
re I saw him. The ambulance attendant held him out to me, explaining over his wails that he had woken up halfway to the hospital and screamed like a banshee ever since. Oh, here was my boy, he was all right. He was himself. I hadn’t realized how frightened I had been that a seizure, something I knew nothing about, would somehow lobotomize him and render him unrecognizable. I thought that seizures inevitably caused more brain damage. I held him tightly, breathing deeply with relief at his wholeness.

  Although the EEG test looked normal, the neurologist said, yes, it was probably a seizure. It might happen again today, in a month or never again. If you insist on medication, she said, it is Phenobarbital, but it slows learning development. I thanked her very much for the information and went home without a prescription. Years went by before I could hear a telephone ring without my heart pounding.

  The next day, I brought Nicholas to school myself and stayed with him. My jaw was still set against this school and the diagnosis for Nick’s learning that it represented. But I sat in this sunny, quiet room listening to Beethoven. Only two other children were in class: one in a hammock swinging gently and the other stacking blocks on his wheelchair tray, his teacher whispering encouragement. I had to admit that this was the perfect place for Nicholas to gently begin his schooling. I was determined that a mainstream classroom was his future, but for now, the Cumberland Hub would keep him safe and soothed.

  After a year of quiet caring in that sunny, warm room with its woven hammock for gentle “sing and swing” therapy, I began to explore preschool options in my neighbourhood. After the seizure, I had decided the bus was unsafe for Nick, and the Cumberland Hub was more than half an hour from home, which meant I was spending two hours a day driving. I was thrilled when Nicholas was accepted as an exceptional student at a local church preschool. But I hadn’t realized that in transferring Nick to his new preschool, he would lose all his therapies. If physio, speech or occupational therapies were going to be part of his weekly routine, I would have to book these appointments at the hospital treatment centre. Mainstream school and therapies didn’t mix, I was told. The trade-off to have Nick in the mainstream translated into a terribly punishing schedule for us both.