Maria Shriver

Dr. Kathy Hull, Founder George Mark Children's House

By Dr. Kathy Hull

The setting is the oncology wing of our local Children’s Hospital in Oakland, California. As a psychologist, I am part of the treatment team that cares for critically ill cancer patients -- infants, little children, adolescents -- all still young enough that their lives should hold futures filled with hope and promise. The year is 1996, and the outcome for most of our patients is a good one. But, sadly, not always.

The phone rings at six on a Saturday morning. It is a fellow psychologist calling to ask if I can come quickly: one of my long-term patients has just returned to the hospital and is dying. After dropping my own daughter off at a friend’s home, I arrive at the hospital post haste. I want to tell Domingo, who is nineteen, how special our friendship has been to me; I want to support his family and try to accommodate their wishes at the end of Domingo’s life; I want to give his mom a hug. She and I have spent many hours together during the course of Domingo’s illness. Our efforts at communication have made us both laugh -- my halting Spanish, her challenges with English, and lots of gesturing. On this particular Saturday morning, however, our shared tears are a universal language of one grieving mother to another.

The losses that I experienced in my own life, the deaths at tragically young ages of my brothers, George and Mark, dearly loved and sorely missed, have forever impacted my life going forward: giving stronger value to relationships, choosing meaningful work, trying to make a positive difference in whatever time I might be on our planet. My experiences at the hospital, combined with knowing the profound sadness of losing a treasured family member, were the “aha” moments that led to the vision for George Mark Children’s House. Wouldn’t it be wonderful to provide a more tranquil, nurturing environment than a hospital intensive care unit where families could stay together and spend quality time at the end of their children’s lives?

The five tips that sustained me through the next eight years (the time it took to develop the concept, raise money to support the project, hire an architect and building firm, negotiate our way through a seemingly infinite myriad of state regulations regarding the provision of health care, hire a staff and OPEN OUR DOORS) would include:

1. Recognize a need. Although there were over thirty lovely such facilities throughout Great Britain, there were none in the United States. The vision for George Mark Children’s House, the first residential pediatric respite and end of life care center in the U.S., became the goal for which we were aiming.

2. Believe in yourself. As Margaret Mead wisely shared: “Never doubt that a small group of committed people can change the world. Indeed, it is the only thing that ever has.”

3. Surround yourself with energetic, committed people. I so agree with Margaret Piercy who says: “The people I love the best jump into work head first without dallying in the shallows, and swim off with sure strokes.”

4. Take painful experiences and create meaning of them. Caroline Kennedy is ever eloquent in reflecting on the profound grief that she has experienced: “When we lose someone before their time, we can stay connected to their spirit by caring for those they loved, doing things they enjoyed, living and working for the things in which they believed, and relying on their memory for a sense of direction and purpose.” When I felt the most discouraged while trying to make GMCH a successful endeavor, I turned to fond memories of George and Mark to remind me of the importance of never saying never. I wanted to give their lives a sense of meaning and immortality, and I could, and would, stay the course.

5. Laugh out loud! Holding on to ones’ sense of humor may be the most valuable life preserver of all. Kathryn Hepburn’s wisdom on this topic is invaluable: “Life can be wildly tragic at times, and I’ve had my share. But whatever happens to you, you have to keep a lightly comic attitude. In the final analysis, you have got not to forget to laugh.”

Love, laughter, tears -- all such important threads in the rich fabric of our lives. Reach out to support the people you hold dear, and those who need the strength you have to share. Together, we can make a real difference.

Dr. Kathy Hull founded the George Mark Children’s House in San Leandro, CA, the first freestanding residential pediatric palliative care center in the United States, because she believes that all dying children and their families deserve a sanctuary as they endure one of life’s most excruciating experiences.