Generic question asked: If we are all unique, are we then the same?!
My response: We are all connected as snow is connected, but, from what I hear, no two snowflakes are the same.
Children’s hospital, June 1986. My daughter was only 4 weeks old the first time we went there for a stay.
Her breathing problems began the day she was born, on May 19. They attributed the congestion that made her turn blue to the speed of her delivery – 9 minutes from transition to birth. The doctor was determined to get to the golf green for at least a part of the Victoria Day holiday. For the second time out of three births, my child did not come to my room to nurse. Instead I went to her in the nursery. Only this time, she had lapsed into an inertia so great that for the first 24 hours, I held her while she was fed through a tube.
Only a dream a week before kept me from collapsing on that day and for months to come. I had dreamed four babies laying on a tilted flat bed under a light. The medical people came and took two of the babies into the regular nursery saying that Ian and Naphtali were all right. My two oldest were Ian and Megan, but I had thought her name should be Naphtali so I understood. The forth baby was blue and I knew he was gone, this child I never birthed. The dream focused in on the last baby a bloated dark-haired little girl lying so still she seemed not to have any mind at all. In my dream I pleaded with the doctor’s telling them she would be okay, if only I could help take care of her, she would be okay. I told her dad and some of the people around me about the dream since I had had a lot of illnesses and had been gestationally diabetic during the pregnancy. Somehow it gave me hope.
As Teresa entered the world the nurse exclaimed, “Look at all that hair!” Having birthed two bald-looking infants, her dad looked at me in wonder.
“It’s just like my dream!” I panted in wonder.
“One more push and he’ll be out,” they encouraged.
“No, “ I answered. “It isn’t a boy. If my dream is true, this is a girl.”
When she entered the world she was able to cry and look around. Satisfied that at least that part of the dream was false, I let them wheel me to rest after the cuddle we shared.
Only a couple of hours later they came to wake me. Teresa had choked and then gone limp. They would need to feed her in the nursery, did I want to hold her while they tube-fed her since she did not even have the muscle tone to swallow? It took not second request.
When I walked into that nursery, my baby was lying on a flat bed under a light. Her expression and flacidity gave her the look of a child with no mind. This was the baby I saw in my dream and the words repeated in my mind – if I could help take care of her, she would be all right. I gave them the order to wake me for every feeding even in the middle of the night. In fact, I stayed with her as much as I could in the days we were in the hospital. This child who had been due on May 27 finally went home on her due day.
It was the next day I began to notice blue on her finger tips and a dusky blue around her mouth. At first, I felt it was just the post-partum depression making me see things. But I couldn’t sleep, terrified of losing her in the night. She slept upright in her infant seat in the cradle by my bed. Every movement would make me start. Too long a period of stillness would cause me to turn on the light terrified to see if she was breathing or not. When jaundice also showed, I told my doctor about the same problem my other two children had had and expressed while I bottle fed her for two days so her system could adjust to some kind of factor in my milk that kept the bilirubin from breaking down.
I felt the embarrassment of a person who had been told so much through life that what she felt wasn’t real. People in the church where my husband pastored would assure me that she was okay when I would ask for prayer for her. After all, she was a big baby, not a preemie at all. Even the medical people in the church looked on me as a post-partum depression mother. I did all I could to hide my feelings. I couldn’t handle one more criticism. My infant, who screamed through large periods of her first months of life needed my even as I needed to care for my 3 year old daughter and 5 year old son as well.
We went to see our doctor within that first week home. He treated me with respect telling me to bring her in the next time she turned blue. I hesitated, feeling stupid that I was being so paranoid about my child. She was okay. I was surely imagining it. The day I dozed after feeding her and looked down to find her turning blue in my arms, I knew it wasn’t in my mind. When Dr. Roetker heard, he sent us to get her tested. I don’t remember whether we went to Lethbridge first, but eventually we ended up in the Calgary children’s hospital, 2 and a half hours from home. A woman in the church had taken the two older children to stay at her home while my husband stayed in that town to do his duties as a pastor.
My bed for the next week would be one of the cots in the crowded mothers’ room in the hospital. My community would be the other mothers in the intensive care room where our children were being tested and treated for a variety of breathing and feeding problems. We would eat and walk together, supporting each other. I would watch each mother being taken for the CPR training they had said we would each have. The other mothers would watch as my baby turned blue over and over after feeds and question why I hadn’t been given CPR too.
They found that Teresa’s stomach valve was not closing properly and taught me how to postion her on a 45 degree board for sleeping. She would not lie flat until well into her 7 month of life without someone sitting alertly by her. The nurse’s would ask me if she had any other episodes and then leave with no change of expression. I began to realize that, though she had been identified with a problem, they believed that I was making it more than it was. I felt despair but holding the dream, kept on taking the next step to care for her.
When she was returned to the regular ward, I spent more than one period of the night sitting with the nurses talking in the center pod where I could look in through the glass sliding door and see her sleeping. They were kind enough and Teresa slept soundly. Somehow, the incident was occuring when I held and fed her. I had also learned to wear a reasonably calm exterior fearing that they would stop me from caring for her if I showed how much I was trembling inside.
The cot next to me had a new occupant on one of the nights I returned to the room. A young mother had come with her 5 year old daughter. She was numb with revelation as the bruises on her daughter proved to be signs of leukemia. My heart broke for this young mother as she shared her pain and her guilt at having blamed her parents who had been keeping her daughter for a few days. We talked about our children, supporting each other in our pain. I felt guilt at the reality that my daughter could grow out of what was going on. Her daughter would need chemo and other invasive treatments to have any chance to get well. The journey this mother was just beginning was a road I could barely imagine. Yet later the next day, she would tell me about a visit with her family and her feelings that at least her daughter was 5 years old and mine was only 4 weeks old. She became a part of the community of mothers reaching each other across our own griefs and fears.
The night before Teresa went home I knew that I needed to sleep through the night in order to drive safely through the prairie areas of Alberta. I would be heading home at 9 in the morning. There would be few places I could stop along the way so I gave permission for one of the nurses to feed her that night.
When I went into the pod in the night, Teresa’s crib was pulled out into the main area by the nurse’s table. “Oh,” I asked, “Was her crying disturbing the other child in her room?”
“She choked on Marilyn last night,” was their tense reply.
“You mean she turned blue and stopped breathing?”
Tight nods were my response. Okay, I was still mystified. I had been telling them about her doing that since I had gotten there. I went on and named other symptoms I had seen. More tight nods. Still mystified, I ask them if there was something more. They asserted that I described what had happened. Though puzzled, I answered in the calm caring way I had learned to use with others,
“I am sure Marilyn would have been upset seeing that.” The strength of their assent rocked me to the core. Holding the façade of calm for a few more moments, I excused myself, went over to see my sleeping child then found the corner in the hospital I had found earlier where I could safely let my legs collapse out from under me while I sat and shook in the terror I felt. If the nurses reacted like that, how could I believe I could keep this child alive?
The next day, the intern who came to check on her no longer had the casual disregard I had come to expect. Was my child acting normal this morning? I had never been ask that question before. The nurses let me know that the doctor was coming in to see her before I could leave. They also noted that they had missed giving me CPR classes and that I would need a quick course and would need to have a longer course in place in our town before she would be able to leave. My hidden corner had several visits that morning.
At noon, we began the journey home. I would need to stop more than once because I was shaking with terror at being so far from help with no way of contacting anyone should she stop breathing. There was no longer any doubt that she had a health risk. I would need everything I had to give in the weeks ahead as I would continue to face the denials of so many others that I needed help.
Eight months later, soon after we began to breathe with relief that her initial breathing difficulty was over, my child would be in the hospital again, this time in crisis intensive care under 24 hour watch of a nurse. There would not be the community of woman as those of us in that ward would be so shell shocked by our children’s struggle for life.
The one conversation I would hold on to was when I went for a meal. Remembering the camaraderie, I chose to sit at a table with another mom. Her child was in surgery for a tonsillectomy. I listened as she shared her fears for her daughter and extended the same encouraging support that I still carried from my initial stay there. Finally she asked me why my child was in the hospital. When I told her where she was I saw the guilt wash over her. She began to apologize for sharing her story when I stopped her. “No,” I told her. “It is true that our children are dealing with different struggles. But we are both parents. Our children are in pain. There is no comparing a mother’s pain. Let’s just be here together.”
I remember seeing her shoulders relax and her eyes lose the look of guilt. It was the words she needed to hear – acceptance for her, just the way she felt. It was the words I had so longed to hear and in giving them to her, I gave them to myself.
I would remember them and the shared love we had for our children for the rest of my life.
And my daughter? She is now married and the proud mother of my two grandchildren. She has a career in data management and is one of the smartest people I know.