JUST AS SHE IS

I am writing our story in the hope that it will help you understand more about raising a child with cerebral palsy.

Thirty –two years ago, my daughter was born prematurely. At five months of age, although bright and responsive, she had poor head control and couldn’t sit properly. After a referral to the Child Development Clinic at Children’s Hospital and many long and wearisome assessments, she was diagnosed with cerebral palsy. How could this happen? Why? I mulled over every incident that had occurred during my pregnancy. The professionals could only speculate. Their response was, “many disabilities are caused by factors beyond anyone’s control.”

Conflicting emotions plagued me. As I celebrated the love of this new life, I also felt angry at being cheated. I had dreams for her and now I felt confused and unsure about what I could expect. I wanted accurate and current information from sensitive and supportive health professionals. Instead, the doctors kept holding back information because they felt I couldn’t cope with the truth. I felt unsupported and demeaned. I wept, ached inside and struggled during those early months.

In my anguish, I didn’t realize that family and friends were also greatly affected by this situation. Well-meaning family members expressed thoughtless opinions. I eventually found myself helping them by sharing my thoughts and giving them information.

My daughter was two years old when I became a single parent. Although frightened and tempted to isolate myself, I knew I had to confront the situation and create positive changes in our lives. My feelings of guilt and anger were not helping either of us. There was so much to learn. I connected with other parents who contributed valuable information; I attended conferences, workshops and consulted with professionals who offered additional knowledge. But the most important thing I learned was that a child with a disability is just that, a child. Like all children, they have love to give and it fulfills their lives to have it accepted.

I have been my daughter’s primary caregiver. It has been hard work to be constantly lifting; helping her to wash, dress, and manoeuvring her wheelchair inside and outside; and always ensuring that she has a companion. As I moved from one experience to another with her, I realized that it was vital for me to stay healthy – physically, mentally, and spiritually. When my daughter turned 18 I turned to a residential agency funded by the provincial department of Family Services as well as the provincial Home Care Program, to assist me. Through respite services I could schedule time for myself and time to be with friends.

Over the years, therapists, counsellors, teaching staff, co-workers, friends and family have offered support to both of us and I’m grateful for their contribution. Along the way, we have connected with the services my daughter will need to prepare for the future. Together, we have succeeded.

With the help of these wonderful people, my daughter has blossomed into a vibrant, outgoing person, whose spirit I admire. No matter what label is attached for the convenience of others; she is totally “herself” and will find her own way of approaching things.

My daughter Karen is a beautiful woman now. She is kind, caring, interested and interesting. She enjoys listening to music, dining out, being with friends and attending sports events, festivals and concerts. She likes going to work and she finds great satisfaction and meaning in her job at Misericordia Health Centre where she has volunteered since leaving school at the age of 21.

The Volunteer Resource Department at Misericordia, in its’ nomination of Karen for the Premier’s Volunteer Service Award, stated that “those who know Karen well fully expect and welcome an opportunity to share in her many victories as well as support her through her challenges. She in turn passes on her inner strength and grace to others, as every good role model should. As we watch Karen achieve interdependence and a sense of worth, we have no doubt that many others in the community will be shaped by and grow through the spirit of this young woman.”

None of us can rely on our present situation to remain the same forever. I struggled between my instinct to protect Karen and the need to let her go. I wanted to assure myself that she has an accessible and safe place to live with an income that will not only provide basic needs but also the “extras” in life which provide enjoyment. As I recognized the need to give others some of my responsibilities I still wanted to assure myself that my daughter would be respected and treated with dignity; that she would have access to opportunities and information in order to make choices and to exercise her rights. It continues to be important for her to learn skills needed to participate as a valued and contributing member of the community. I hope that she attains all of these things.

Karen’s gifts are many. She is somebody who is a really great generator of relationships in the community. She has a strong propensity to relate to the “heart qualities” of other people. Karen’s positive attitude, coupled with an outgoing approach to life, allows her to teach others very subtle but important lessons. She helps others realize that in order for communities to grow richer and stronger they need to recognize and appreciate the gifts of all people.

In the fall of 2006 Karen transitioned from the home she has shared with me to a “home of her own”. Mobilizing staff and resources took a great deal of time and energy but well worth every second and every action. Karen loves her house and enjoys being a member of the local community.

People with disabilities should and can live in their own homes. They should be “part of” not “separate from” community. For Karen and I it has been a privilege to play a small part in creating a world in which all people belong and have a place they can call home.

Thanks to Karen, not a day goes by without my learning something about living, especially a sense of what is important in life. I am very proud of her. Not only do I love her, I like her Just as She Is.

Laura Schnellert, Program and Membership Director
Cerebral Palsy Association of Manitoba Revised 2009