A Parent’s Perspective
by Cal Lambeth
My daughter was born nine weeks prematurely after my two week stay in the hospital with ruptured membranes. She had to be resuscitated in the delivery room. She had no breathing difficulties and was soon transferred out of the intensive care nursery. Five weeks later, still a month ahead of schedule, we took her home. I remember that time as a difficult one of adjustment. She was our first baby. Things hadn’t gone according to”script”. I felt both she and I had been cheated out of those important nine weeks in the womb. These negative feelings were those of many new mothers and they did not relate to any anxiety about her long-term health. Rather naive, I had considered that her birth circumstances were either “do ” or “die”. She would be born and survive with no further problems, or she would die (probably from breathing difficulties). I was unaware of the increased risk of many disabling conditions which prematurity creates.
Over time I began to notice “things” about her. She was irritable and colicky. She couldn’t seem to master breast feeding as her tongue kept thrusting out. Her head control was very poor. She kept arching her back to look over her head. For a time we all found this amusing, thinking that the ceiling fascinated her. Her right hand remained almost always clenched. Her legs seemed stiff and her feet scissored. Gradually, private little fears began to creep in, but I held them off as merely relating to her prematurity. Because of her premature birth she became involved in a study of lung maturity. This necessitated follow-up with certain health professionals over the course of the year after her birth. It was as a result of this study that we received a diagnosis. When she was about 11 months old a paediatrician at one of these meetings merely said “You’re aware that she has cerebral palsy.” She was described as “mild to moderate”. I was absolutely
devastated. I remember clutching her and sobbing, “My poor baby!”. It was like a scene
from a bad movie and I still remember it vividly. Later, doctors apologized for this rather
blunt and unprepared announcement. It seemed that they had been concerned about
her condition for some time but were monitoring it and didn’t want to say anything until
they were sure of the diagnosis. Although I appreciated this goodwill, I questioned the withholding of this information. They couldn’t shield me forever, and in my opinion, my daughter was losing valuable time in which to begin physiotherapy.
Thus began our lives as “Parents of a Special Needs Child”. Those were bleak days. I was despondent, panic stricken, and felt that life would never be good again. My career plans were destroyed. Looking back at this time I realize how bitter and hostile I was. I found it difficult to maintain close relationships with people who had children of a similar age as my daughter. I wanted to scream when they complained that their child was “into everything” while mine lay flat on the floor, unable to sit or crawl. I also felt angry when people told me how marvelously I was coping. I felt neither marvelous, nor that I was coping well. Furthermore, it seemed that this was an indication of their view that my child was a burden. Privately, I felt this way myself at times. I suppose this all represented a fairly typical and predictable process.
Although I presented a bold front to those around me, the truth of the matter was that I was depressed and frightened. I was fortunate to have a family which offered physical help and a listening ear. Not everyone is so lucky. Furthermore, I strongly felt the need to talk to others about their own experiences. My first thought was to look up “Cerebral Palsy” in the telephone directory. I took a deep breath and called the number of the Cerebral Palsy Association, determined to be strong and in control. Shortly into the conversation I broke down, but the woman I spoke to was kind. She offered the information that her husband had CP and that they were expecting their first child. These words gave me a new sense of what the future could hold. CP was not a death sentence. My child could grow up, be happy, lead a life of purpose. At least the possibility was there. From this conversation I received information about parent support
groups which I attended for a time and found valuable. But the most important fact was that I had taken some action. This small step had helped to allay the sense of “aloneness” and had given me a renewed sense of control.
Our family is now much like any other – enjoying the excitement of new achievements and the ups and downs of child rearing. But it would be wrong to claim that all of the emotional and psychological hurdles have been overcome. As our child matures, new challenges present themselves. We are always seeking new ways to adapt her physical environment to allow greater independence. We want to encourage self-esteem, and pleasure in new achievements. We are not experts in these matters, but have learned to rely upon our common sense and the knowledge and expertise of those we trust.
from the quarterly newsletter ‘InformAction’
The Ontario Federation for Cerebral Palsy
1630 Lawrence Ave. West, Suite 104, Toronto, ON, M6L 1C5
Phone: 416-244-9686 Toll Free: 1-877-244-9686