Are you courageous?
I walked into the exam room as the mother said to me, “She has been waiting for you.” I turned to the mother who was sitting next to a home healthcare nurse. The mother and the nurse were smiling. The nurse turned to the mother. “I don’t think I have ever seen her sit so quietly.” The mother answered, “She loves coming here for her visits.”
I walked over to the young woman sitting in the wheelchair and touched her arm. I had first met her about two decades earlier when I diagnosed her with cerebral palsy. She had limited use of her arms and legs and had difficulty speaking and swallowing yet even as a toddler I remember telling her mother, “Never let anyone tell you she does not understand every word you say.”
“How are you?” I said looking into her knowing eyes. She shook in her chair and said, “Baby” over and over. Throughout her life this was the only word I had ever heard her say. I sat down next to her. “You look great today.” I said. I turned to her mother. “How are you feeling?” “Tired, very tired” she answered. “She loves coming to see you.” “Have you been getting enough sleep?” I asked. She shook her head no. “You have to take care of yourself. We can’t do this without you.” “I know, I know,” She replied. I returned my attention to her daughter who was smiling widely and still saying, “Baby!” “I think I need to take you dancing in that wheelchair.” I said to her as I rolled her chair back slightly. She stiffened her legs and arched her head back. “I think we will be able to do some great spins in that wheelchair.” Everyone smiled as the world disappeared and only the moment remained.
Parents of children with special needs are confronted with unasked-for choices. A child is born who is different from other children. A difference filled with beauty and sadness. Every parent confronted with such an event must make a series of choices.
The first choice is avoidance. There is no greater pain than the pain felt by your child. All parents seek to protect their children from suffering and lack. This genomic drive is imbedded within the psyche of every parent. This results in parents willing to risk and give everything, including life, for their child. This drive encourages a parent to live in a make-believe diorama where horror, pain, suffering and loss are cloaked by avoidance.
Other parents move beyond avoidance and choose to alter or adapt their lives in exchange for opportunities for their child. Such a gift is given with love and seeds hope in the heart of the parent. Happiness is often found as challenges replace opportunities and actions and deeds replace parental dreams and relationships.
A final choice available to parents is to accept and live in the present rather than the past or the future. By living in the now these parents realize their child came into this world having made a choice. A choice to experience a life chosen with foresight and understanding in exchange for the knowledge and experience it would provide. A life filled with emotional and physical difficulty, suffering and sadness yet overflowing with joy from the words and touch of those they love.
When I touched her arm that day, heard the joy in her voice and saw the love in her mother’s eyes, I remembered what her mother and I had talked about almost two decades earlier. “Her body did not fail her,” I told her mother. “Her cerebral palsy has freed her to live a life where her acceptance has given each of us the ability to replace fear, anger, anguish and grief with our own acceptance and love.”
When she was an infant I held her in my arms and heard the song of her voice. I knew but had not yet seen. Now, on this day, two decades wiser, my heart opened as we danced under a shimmering light projected through this child and mother both overflowing with life, love and courage.