Initiatives of Change - Detailed view of For A Change Articles

By ANNIE CANTWELL BARTL
Four years ago our son Anthony, then aged six, was hit by a car outside our home. I was beside him within minutes. He was lying unconscious in the road in his school uniform. His silly brewery hat with the big brim was still on his head. I quickly realized that he wasn't breathing. I sobbed but then a primitive urge to protect him made me decide to be calm so that I would be allowed to stay with him in the ambulance and at the hospital.

My family and some friends stayed with us through the night as we waited and watched in anguish. Anthony was diagnosed as having head and internal injuries. During the night, while he was in the operating theatre, he had a massive haemorrhage. The medical staff didn't know its source. We could only sit in helplessness and fear. After major intervention, his condition stabilized and some of our anxiety abated.

We continued to wait and watch during the next week while he was in intensive care. His head injury improved and he seemed to be getting better. The staff were optimistic about a full recovery. So it was a great shock to learn that he had a spinal cord injury and would need a life support-machine for the rest of his life.

Agonizing questions
Our horror was numbing but even so we were completely overwhelmed. How could this active boy, who had been the best runner in grade one at his school, cope with being a quadriplegic, unable to move any muscles below his neck? Was life the best thing for him, or was it better for him to die? Such agonizing questions had to be faced.

The doctors made it clear that their choice would be not to continue treatment. Although we felt extremely vulnerable, we felt that we had to talk to Anthony himself and let him decide his future. We searched for what he wanted. He indicated that his choice was to stay with us. So we decided to care for him fully and help him have a satisfying life, though we did not know what it would involve. We knew we would have to align ourselves very closely with Anthony's needs. We couldn't do this from a distance. We had to extend our boundaries and leave our comfort to generate a full life for him.

After two years in hospital, Anthony returned home to our family. It was good for his brother and sister to have him back with us. He now attends the local state school and writes with a pen in his mouth. He works an Apple computer with a mouthstick. He does beautiful drawings and stories and goes everywhere that we go.

I don't understand how he copes. But I rejoice in his courage. Once we took him on one of those big curly slides that wind down a hillside. Bernd, my husband, took him out of his chair and off his life-support machine and ran up the hill towards the slide. At the top, I manually pumped air into his lungs with a bag and Bernd positioned him on the slide. Bernd sat behind him, supporting him. I pumped more air in and then they took off. Anthony's face was aglow with joy. I ran down the hill and pumped more air into Anthony when he reached the bottom. True to character, he demanded a repeat performance.

We feel great joy when we acknowledge that this little boy who should be dead is not only alive but as mischievous as he always was. He will tackle anything, just as he would before his accident. He will now get others to do the naughty things that he would like to do. And there is his belly-aching laugh when someone does something silly like repeatedly throwing a ball at his chair. I don't know why he chooses to get on with life so completely, and is now so patient when doing intricate tasks - like spending an hour drawing on a birthday card for me. There's so much that I don't understand about him but I thank God for.

It is Anthony himself who teaches me much. What he most wants is to be discovered and valued for who he is. When I can be with Anthony in this way it is nourishing and sustaining for us both. I feel his resilience and the deeper things inside him that are a source of life for others. When I am restless and caught up with my own agenda, he draws me back to what is most important.

Not everyone shares our vision for this sort of life. The road is long and lonely, with only occasional professional support. There are people, both medical and lay, who make it clear that they would not have decided to keep Anthony alive. The financial and personal burdens are, they feel, too great. At times Anthony has been excluded from social events. Yet I have also been surprised and delighted by people's goodness. For instance, some local people, most of whom we had never met, organized a street party that raised A$200 for Anthony.

Dream
The demands are still huge even though they have lessened. We have become more sensitive to the great number of people in our community who are on the fringe and in need of support. It is our dream that we will be further able to help them as a result of our knowledge. At the moment we are trying to raise money for an extension to our home so that such people can stay with us.

At times I am burdened by fear or sadness. It is so good when others can listen to me with gentleness and empathy - and they can do this only when they are at home with frailty and powerlessness within themselves. I have found that it is at this level that God is most alive for us. He is with us and loving us as we are.

Likewise Anthony in many ways is helpless and yet can draw love out of people. He has much to teach us about courage and what is important in life. I feel so grateful for him. I know that God will stay with us in our stumbling attempts to love, and keeps calling us to each other and into his love.