Unbearable
Prognosis
by Karen Squires
The Doctors words came easily, he had no doubt uttered them many times before. I, like any other parent though, had lived my life hoping to never hear them.
"Your son has a disease, there's no cure."
The doctor didn't even have the compassion to apologize. There was no "I'm sorry to tell you this," or "I feel so bad your son is dying," nothing to indicate he hated this part of his job, or felt horrible that my son's life had just changed in such a drastic way as to scar both him and I forever.
He continued on. "Your son will be in a wheelchair by his late teens and won't live past 40." I turned away from him and looked out the window of the tiny office we were in. He moved to sit closer to me, to get in my line of vision. He wanted to make sure I was listening.
"I need to tell you this now so that you won't be surprised when his legs grow weak. Kids with this disease die easily from pneumonia. They don't have the muscle strength to cough up mucus when they get a cold so it goes deeper into their lungs and kills them. You'll have to watch for signs of it."
I continued to look out the window. I couldn't look at him. Why didn't he just stop talking. How much more could I listen to before I ran from the room, a hysterical mother, grabbing up my 6 year old who was waiting in the next room, playing with the toys that were supplied to keep the children happy while doctors destroyed their parents in quite little offices away from tiny ears.
He stopped talking after a while. He knew I was no longer capable of listening. He got up and left the room. I turned to watch him as he left. His long white doctors coat was wrinkle in the back from sitting in offices giving out horrific news.
I stood up, not sure if I could walk. My legs felt like they were strangely light, as if full of helium. I felt dizzy, disconnected.
I found Joay still playing with toys. He seemed different, a sick child, like the ones you see on T.V. during telethons. The ones that belong to other mothers. I went to him and heard myself telling him it was time to go. He got up and we left.
The drive home was hell. The tears that had strangely not appeared in the office now ran off my face and wet my shirt. I put sunglasses on to try and hide it from Joay. He was chattering about his day at school. He asked me a question and I hadn't heard him. He looked at me waiting for my response and noticed me crying. He asked what was wrong. I told him my allergies were bothering me and he accepted the lie.
We stopped at a park on the way home and he ran from swing to slide to sand. I watched him run. His legs were weak and he fell easily. It didn't stop him, he got back up and kept on going. I often thought of him as my little energizer bunny. I started to think of the doctors words again,... in a wheelchair by late teens and dead soon after 40. I got up and called on Joay. I had to get home. I could hardly stand being in my own skin. I wanted to run until I either died or changed the doctors words.
At home I felt no better. I kept the evening as normal as possible. Dinner, bedtime story, hugs and lights out.
I was a single parent and had nobody to help me with this horrible thing that happened. I crawled into bed and cried myself to sleep.
I was a student at the University of Utah and my days consisted of classes, study time, and taking care of Joay. I didn't have the option of falling to pieces, no one to pick me up if I did. It was up to me and only me to handle this.
I got Joay ready for school the next morning and dropped him off. I cried all the way to school and managed to pull my self together to get through class and then cried all the way home.
I told only a few family members of Joay's illness and received very little support. They couldn't understand how I felt. They said that 40 was a long way off and maybe a cure would be found by then. It's one of things that people say when faced with grave news and lack the skills to handle the situation.
The days, weeks and months went by. I found myself no longer thinking about Joay's disease. I was still attending school and it left very little time to think.
About a year after the diagnosis I suddenly became deeply depressed. I cried over anything and everything. I wasn't handling my daily duties well. I couldn't sleep, concentrate on school, and had no patience for Joay. I dreamed of going away to some foreign land by myself. I had lost interest in my studies, my son, my life.
I realized I was grieving but was helpless to control it. I dropped out of most of my classes and continued only the few I needed to still receive my student loan. During the summer I didn't attend at all. I enrolled Joay in a summer program and would drop him off every morning only to come right back home and cry all day in bed. The summer passed and I was feeling no better. I had to go back to school in the fall but I knew I couldn't do it. I had lost weight and was down to 87lbs.
The doctors office called wanting to see Joay again. They wanted to see how his disease was progressing. I dreaded going back there and wasn't sure if I could even get myself to the office, I could hardly get out of bed.
The day of the appointment came and I managed to get up and get dressed. I had swollen bags under my eyes from crying, my skin was sagging on my face, my clothes hung from my bones. I was shaky when I walked and probably shouldn't have driven but I was too depressed to realize it. We made it to the doctors office and Joay and I were led back to that horrible tiny office. They allowed Joay to stay with me and I hoped it meant that there was no more bad news. I soon realized though that if there was they would simply take him to the toy room.
The doctor came in and sat down. I remembered him well and wondered if he remembered me or if I was just a chart with notes and bad news. He watched Joay stand up and sit down, walk down the hall, run down the hall, and tested his muscle strength. He called on his nurse and had her take Joay from the room. I was so weak from depression and weight loss that I thought I would actually die at that moment, would have welcomed it too. He pushed his chair back from me and put his hands on his hips. He looked at me with an expression that didn't hint of what he was going to say. I froze. He began to talk.
"I don't see any signs that Joay's muscles have deteriorated. I believe that he will walk the rest of his life unless he becomes overweight. He will live as long and you and I unless he develops lung problems."
It took a moment for me to understand what he had said as I was expecting bad news.
He looked at me, waiting for a response, a question. I didn't say a word. I had ran out of words long ago when my depression started. He picked up Joay's chart and spoke to me while writing in it.
"Come back one year from now and lets see how he's doing."
With that he left the room. I sat there for a few minutes unable to move. The nurse came in and ushered me out. They no doubt needed the office for the next unsuspecting mother. I got Joay, left the building and never returned.
Over the next few months my depression lifted. I became interested in life, school and motherhood again. I gained back my weight and became happy.
I am angry at the doctor for his initial prognosis, it was premature and he made my life a living hell. Joay and I may have been just another case to him but we are human beings with feelings and I believe he forgot that. He should have waited to give the prognosis, although the diagnosis would have been the same.
I carefully watched Joay's muscle strength over the years and worried over every fall, wondering if his disease was progressing. It never has. He is now 22 and still walking. He has had many colds that never turned into pneumonia although I spent many days wondering if they would and still do. I haven't told him of the year that changed my life and his. He is happy and I expect him to live a long life.
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