Katie Gerstenberger died at twelve from a particularly vicious form of cancer (I know; is there any other kind?) that moved with speed and in silence to strangle her internal organs before offering only the subtlest hints of its presence.
I don't remember how I "met" Katie's mother Karen. It happened sometime during that fog of the first couple of years after Josh's death, when I was searching for . . . well, I have no idea what I was searching for online, but among my discoveries were other mothers, other women whose lives had been transported to that other place where children die. I suppose we all live in a Madeleine L'Engle novel, and not a very good one at that.
At some point, four of us connected in a particular way, and spent months together writing our way through a "retreat" with Joyce Rupp's book, Open the Door. By that time, our children had been gone for awhile, and we had each reached a point at which we wanted to re-engage with the rest of the world. Of the four of us, three had young adult children who had died suddenly, without warning: an unknown complication of an illness stalked a young man in the night, a rogue wave pulled a young woman out to sea, and depression claimed another young man, in the form of suicide. Katie was by far the youngest of our children, and the only one to die after a lengthy illness.
Because of Katie chronicles the Gerstenberger family's experience with that illness, from the first hint that Katie was not bouncing back from what seemed to be some sort of childhood virus, through the terrifying testing and diagnosis, through the family move to the hospital, through Katie's return to home and hospice care, through her death. Throughout the book, Karen offers commentary and suggestions that should be helpful to families and medical caregivers alike.
I think that the book may prove particularly helpful to parents and older siblings caught in the same maelstrom of illness and procedures. Karen describes the alarming disorientation of being sucked into the world of children's cancer and hospital life; in particular, the loss of privacy and the sudden appearance of an entire phalanx of personnel in her family's life, each representing a profession and set of responsibilities previously unknown to Katie's family. Seattle Children's Hospital clearly represents a model of family centered care at its best. The family is involved in every decision; parents are able to be present for every procedure. School and tutoring options are available for patients and siblings alike ~ a semblance of normalcy and activity for those who as a family move far from home to access care for a child. And yet . . . some interactions go poorly. And parents sometimes have to travel several floors to use the bathroom or take a shower!
Since the beginning of my breast cancer experience, I have realized anew how important it is to have a guide (or several) whose perspective mirrors your own. I have learned a great deal about breast cancer from the doctors and nurses, of course, but none of them have provided much in the way of guidance about daily life and comfort. That has all come from other women: from their books and phone calls and emails and blogs and, in the case of a couple of friends who are nurses, from their generous arrival on my doorstep to help with home care. In the shocking world of children's cancer care, Karen Gerstenberger is such a guide.
No one would envy a mother whose child has died, but I think that in our little group of conversing mothers, the rest of us have envied Karen her time to care for Katie and to say good-bye. What shines through this book, and is of far more importance than the medical detail (although I know that parents in similar situations will cling to that, and rightly so), is the closeness of the Gerstenberger family, a closeness forged in honesty and love as Katie's prognosis worsens. Probably many of us have experienced that awful silence and isolation that accompanies serious illness and death; family and friends vanish into thin air, put off by the vehemence of our reactions, frightened by the physical realities, and afraid of doing or saying the wrong thing. Karen's forthright approach to her daughter's final months will perhaps ease the way for others to know how to offer companionship to those in trouble. And her honesty and compassion certainly serve as a model for other parents called to wade in these particularly deep waters alongside a beloved child.