Parents...What Do We Need? Information and Kindness!

Here is a story that I tell in my book, "The Four Walls of My Freedom". It is a story about when Nicholas was a baby and we had just received his diagnosis of cerebral palsy and possible 'mental retardation', as they called it then.

Jim's cousin arrived at the door with another woman in tow. The stranger introduced herself this way: "My name is Kathleen and I'm a volunteer consultant for parents of children with disabilities. I'm a Mum myself." Kathleen's arms were filled with piles of information about therapies and community resources. She put the papers down on my dining room table and then reached out her arms to hold me.

As I remember that day, I am reminded that we mothers and fathers of children with disabilities need two things more than any other: information and kindness. This is what my online friend Rose said about getting the information that is relevant and the kindness that she needs:

We must always remain hungry for knowledge to help our children and inform our difficult daily choices. I want it all out on the table, the good and the ugly. I want options explained to me in detail. I want time to do my own research and to connect with other parents for their experiences to assist me and my husband in reaching our decision. We have a right to these things; our children have a right to our full awareness and understanding of their medical condition, treatment, and potential dangers/outcomes. Their lives are literally in our hands.

Moreover, we are entitled to respect by medical professionals, who should realize that any decision we make is difficult. There are risks to doing nothing, as well as intervening drastically. Choosing which path to follow is enormously stressful, painful, and frightening. Overall, we need compassion as we wander our way through this twisting and complicated journey.

Yes, we need compassion badly. I remember perfectly clearly standing in the hallway of the hospital and saying, "I really need you to be nice to me. I am not kidding, it is so important. Please." But I remember his face - he didn't understand.

In the recent case of Amelia at the Children's Hospital of Philadelphia, for example, it seems pretty clear that the family received neither relevant information nor compassion. Maybe, just maybe, if we keep telling our stories, they will listen and finally understand.