Commentary : Children Face Death With Courage, Strength

As a pediatric nurse with San Diego Hospice, I am often asked why I have chosen to work with children who are dying.

For me, it is a privilege. Each time, I stand in awe of their inner strength and wisdom. These young children fight with all their might and live with all their hearts until they finally surrender to peace. To witness and participate in the living and dying of these children transcends everything ordinary in one’s world. I learn something from each child.

In sharing the story of one very special boy, I hope you will appreciate the rare events I have experienced.

The first time I met 8-year-old Matthew, he appeared frail and wide-eyed, keenly observing me while I spoke with him and his mother. His parents were protective, and concerned that I might be overly direct with their son about dying. They were unsure just what I and the other hospice staff would be doing. We knew we were entering their lives during an extremely intimate event and that we could never truly experience their loss or grief. But the hospice staff could provide support, information, medical care and an emotional outlet. Their concern soon relaxed.

Matt was born with a defective heart, which had required several surgeries and difficult, often painful procedures over the years.

Through it all, he exhibited a desire to maintain control over his body. He was kept informed about his condition and actively participated in decisions about his treatments--always maintaining in his quiet way a consistent courage and inner strength. During one hospitalization in the intensive-care unit, Matt discovered that another child had died. He told his mother: “You know all these children are really brave, Mom, it’s just that some get tired and can’t go on.”

Having a child with a life-threatening illness dramatically alters the concept of normalcy in family life. But Matt’s family always tried to maintain balance between normalcy and illness, greeting life’s events with joy and celebration. His parents helped him live fully all along. They openly discussed their feelings and their fears with each other and with all three of their sons. This gave Matt permission to explore his own response to the situation.

Matt knew he was dying. His physical symptoms were worsening and his strength was failing and the honest information he received from caring professionals indicated that he wouldn’t get better. I had many discussions with his parents on the implications of this.

Adults tend to underestimate the capability of wisdom and insight in children, but I have witnessed it repeatedly. I have seen them age 4 or 14 bluntly ask, “Am I going to die?” When efforts are made to keep the facts from children, it is often the child who leads the way in acknowledging the possibility of dying. Their courage challenges the adults to follow. Perhaps this insight comes from going through so much so quickly. Maybe it accelerates their development.

Dr. Elisabeth Kubler-Ross, in her book “On Children and Death,” summarizes best: “They have gone through the windstorms of life at an early age, they know things that others their age would not comprehend. Thus God who creates us all, compensates the little ones as they fail physically. They become stronger in inner wisdom and intuitive knowledge.”

During his last few weeks, Matt’s parents saw this and developed a profound respect for their son’s inner resources.

The religious foundation of Matt’s family life provided him with a true source of comfort as he realized he had little time left. His blooming faith allowed him to believe that he need not fear death nor be alone. His parents told him that, despite his physical absence, he would always be a part of them.

Matt knew he wouldn’t live to see his ninth birthday, a major event to him, so he and his family decided to celebrate it early. He wanted it made clear to his guests the truth of why it would be held before the actual date.

He also wanted to celebrate Valentine’s Day, but knew that it, too, would be out of reach. So he presented his classmates and teacher with a tape-recorded greeting as his way of saying goodby. He passed out Valentine candy hearts at home with loving messages to his visitors that day and presented me with a heart-shaped box of chocolates. I was so moved by the gesture, by the honesty and openness of his vision, and the serenity in his huge blue eyes.

Matt’s last hours were long and full ones. He struggled for breath and we worked hard to relieve his discomfort with morphine.

Still, he relentlessly pursued his last personal gestures of love to his family. Barely able to sit up, unable to walk, he sat in the kitchen and made his brothers their favorite lunch treats for school, sent his grandparents out to purchase crosses for his brothers to remember him by, and, in between, he satiated his cravings for fried clams, french fries and a hot dog--all this only hours before his weary heart stopped and he was able to let go. His mother fondly remembers his endless string of “I love yous” and the showering of kisses for days before the end.

Matthew died the evening of Jan. 27 in his home, peacefully, in the arms of his parents. He was surrounded by his family and a few honored friends: his lifelong pediatrician, his confidant-counselor and myself.

As I watched his last breaths, listening to his family, I was overwhelmed by the similarity of this experience to coaching a woman through the birthing process. Matt was released with a prayerful and emotional farewell I will not forget.

Although my time with Matt as his hospice nurse lasted only a few months, he touched my life and left a spray of light. Matthew gave me a sacred gift in allowing me to share the last steps of his remarkable journey.