The ultimate act of faith

May 17, 1994|By Gordon S. Livingston

OUR 6-year-old son, Lucas, died two years ago at Johns Hopkins following complications of his treatment for leukemia. He took with him our hopes for his future, but he left behind the memory of the purest love, given and received, that we have ever known. Though much of the time since has been painful, our journey through grief has finally become for us a healing dream which carries within it meanings we never thought to see.

During his brief time, Lucas brought us happiness beyond all calculation. After he became ill, he underwent six hospitalizations for chemotherapy and, finally, a bone marrow transplant which failed. During that time, Lucas taught us about the power of the human spirit and what it means to be a family.

Harold Kushner has written: "Vulnerability to death is one of the given conditions of life. We can't explain life itself. We can't control it . . . All we can do is try to rise beyond the question 'Why did it happen?' and begin to ask 'What do I do now that is has happened?' "

The suite we have established at the Tremont Plaza Hotel is one measure of our answer to that question, an important part of our attempt to attach meaning to Lucas' life and death by creating in his name a memorial which will be for families of sick children a place of comfort at a time they need it most.

The treatment course following a bone marrow transplant in a child is lengthy and complicated. Since Johns Hopkins is a well-known center for this procedure, people travel here from around the world. The inpatient care lasts two to three months, and daily outpatient follow-up is required for up to 100 days.

The process of finding suitable housing can cause an emotional and financial crisis for families from out of town. One parent is allowed to sleep in the child's room, but other family members have limited choices. Hopkins has recently built additional housing near the hospital, but these units are usually full, and families in need of a place to stay often have to pay for accommodations elsewhere. This is why the Children's Center has endorsed our project.

The money raised to create this memorial came from more than 300 donors as well as a variety of Maryland foundations and corporations. We decided to open the suite now and make it available eight months of the year with the hope that our continuing fund-raising efforts will eventually enable us to endow the project indefinitely.

This is the second lodging at this hotel to be offered to families of Hopkins. The owners, Chris and Debbie Smith, dedicated a similar suite in 1990 in memory of a relative who also died following a bone marrow transplant. For our family this place was a source of comfort and support. After Lucas' death, we could not immediately face returning home without him, so we spent three days here, cared for by an attentive hotel staff until we gathered ourselves to resume our lives.

The creation of this memorial has been a crucial step in our family's efforts to find meaning in our loss, to distill hope from anguish and to validate the lesson of Lucas' life and death: that it is our ability to love, still and again -- the ultimate act of faith.

Gordon S. Livingston writes from Columbia. Humorist Art Buchwald will speak at 7:30 tonight at Shriver Hall of Johns Hopkins University to benefit the Lucas Scott Livingston Memorial Fund.

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