In 1993 my two youngest brothers made a pact to try to stay healthy enough to outlive our parents. It was not to be.
This pact wasn't as strange as it might seem, as they were the last two of my six brothers who had lived with, and would ultimately die from, complications of agammaglobulinemia. My family consisted of my parents, seven brothers, and me. My oldest brother was beset by chronic respiratory illnesses as a child and eventually, in 1955, was diagnosed by Dr. Nancy Huang, a physician at St. Christopher's Hospital for Children in Philadelphia. Each child was subsequently diagnosed with the disorder, except for my brother Roger and me.
In those days, treatment consisted of im gamma globulin, inhalation therapy, and antibiotics to fight the almost constant infections. The person who held it all together was my mother. She'd graduated from a diploma program, served four years in the Army Nurse Corps during World War II, and married my father soon afterward, teaching med-surg nursing for the next three years while obtaining a bachelor of science in education degree.
Only her knowledge and skills, and her partnership with Dr. Huang, kept my brothers as well as possible and the family functioning. She devoured the literature of the time and made herself an expert on the care of children with immune disorders.
In some ways chronic illness was the organizing framework of our world. It was not unusual to have one boy in a local hospital, another in a Philadelphia hospital, and others in various states of wellness/illness at home. My mom and Dr. Huang collaborated on treatment decisions, brainstormed with other providers, and acted on ideas put forth by the hospital nurses, residents, and pharmacists.
I think my mother felt it her mission to normalize our lives as much as possible. While a very large room in our home was outfitted with hospital beds, mist tents, supply cabinets, and a medicine refrigerator, it also had a Ping-Pong table, television, and bookshelves overflowing with books and toys. Academics were extremely important. Tutors filled in gaps associated with prolonged absences from school. Chores were distributed based on levels of energy and severity of symptoms-as for most children of nurses, symptoms had to be pretty severe to get out of doing the dishes.
And yet, my mother was always one for making special moments. She was a big fan of the saying "make hay while the sun shines." If everyone was fairly healthy, no one would go to school and there would be an outing. Animal visitation wasn't done in those days, but she had dogs and cats smuggled into hospital rooms while staff pretended not to notice. While there was the squabbling, teasing, and laughter found in any big family, at times it was with a sense of time running out.
She was a woman of great faith. An Irish Catholic of the old school, Mom believed God gave her those children as special gifts to love and cherish. Once, one of my cousins, with the arrogance of youth, asked her why she kept having children when they were all sick. She replied, "Which of them would you prefer had not been born?" Another time I heard her comforting a mother whose child had cystic fibrosis. She said, "You do your best, help them live as full and normal a life as possible, and love them while you have them."
She always said that being present was more powerful than morphine or chemo. Over the years, my brothers succumbed to various maladies. Raymond died at 10; Bob at 19; Ron at 17; Richard, the oldest, at 38; Roderick at 33; and Randy at 31. I see her at the bedsides of each as he died-speaking softly, telling stories, and delivering the comfort measures that comfort the doer more than the patient.
When I was becoming a nurse, she advised me to read constantly because the pace of change and progress would only accelerate. She was generous with her knowledge about the disease and lectured at nursing and medical schools.
She wasn't perfect. She didn't suffer fools gladly and more than once she dismissed physicians from rooms because, in her view, they were either idiots or had no people skills. Both were mortal sins.
Over the years I've looked for meaning in all of this. I've realized the great gift was that in my family there was no illusion of forever. If you loved someone, you let them know. If there were celebrations to be had, we did them to the max. We took nothing and no one for granted. I remember thinking, as I sat beside my mother as she was slipping from life, that presence is more powerful than medicine-and how lucky I was to have loved all of them while I had them.