A CONVOCATION OF FATHERS, united in their calling to parent daughters and sons who live with disabilities, convenes each year as the summer solstice approaches. Under the auspices of the Washington State Fathers Network (a nonprofit organization held together, barely, with bake sale brio) these 80-or-so men care for children of all sorts, from infants to teens to young adults, of diverse colors and creeds, with autism, cerebral palsy, or chromosomal rearrangements, with diseases afflicting the lungs, bowels, heart, or brain. Some of these fathers asked for this job, adopting their child with special needs; most did not. All gathered here, though, strive to meet the challenge. This gathering of grief-love roils with emotional contradictions, the warp and the woof of these men's lives. As they talk with one another, exchanging stories, feelings, and points of view, common themes emerge. The unpredictable course of their children's conditions, marked by Odyssean reversals of fortune, revises their dreams and goals relentlessly. Caught at times in a vortex of disappointed frustration, they struggle with surges of anger-guilt, wondering what life would have been like if their child were normal, feeling angry over the loss of what might have been, and then feeling guilty for what the anger confesses. At home, balance proves elusive. They worry about their other children, their spouses, and their marriages. So many medicines, therapies, and programs. Amidst a cacophony of advice and prescriptions, their families labor, bereft of spare time or energy. Not every day, no, but sometimes still they wonder, why my child, why my family, why me? Grappling constantly with self-other, they ask themselves whether the pursuit of this or that dream is truly for the child's sake or whether certain aspirations are, in fact, more in the service of their own egos or emotional needs. Experience, bitter and sad, has taught many of them that they cannot speak freely with family or friends about their stresses and resentments without risking an incredulous reaction or silent withdrawal. All the while they wonder how other fathers deal with this issue or that dilemma, the unseemly problems or concerns that go unnamed outside this haven of fellow strugglers. Some fathers, after what is described as a personal epiphany, have stopped wanting their child to be the person she or he isn't. One new day, they realize that what they have is what they've got, and, filled with a swell of pride-sorrow, strive to change from seeing what their child doesn't do to relishing what this son or daughter does do. They say, "We started out wanting to change our children; our children wound up utterly changing us." They have had to go beyond acknowledging problems that they cannot fix to embrace their personal, irredeemable doubts and desires. They oscillate between questing and coping, one minute seeking new solutions, the next easing into a profound acceptance of what is, worn out yet resolute. Rarely is so much paternal emotion contained within 4 walls or are fatherly desires so clearly expressed. Mothers, who typically bear most of the demands of raising a child with special health care needs, are the parents most often heard, and perhaps rightly so. Yet these children still need dads, and in this particular uncharted domain of fatherhood, there are no answers, just struggle and search, lament and celebration, a journey made without a map. For the past 4 years, as a pediatrician, I have collaborated with a parent, Robert Perretz-Rosales, in facilitating a group discussion on how to balance the drive to improve the lives of these fathers' children with the need to accept certain aspects of the status quo to take care of the rest of the family. I thank the fathers of this group for allowing me to participate in their meetings and especially Robert for sharing his experiences and insights. For more information about the Washington State Fathers Network, contact James May, program director; telephone: (425) 747-4004, extension 218; e-mail: firstname.lastname@example.org; Web site: http://www.fathersnetwork.org.
Archives of Pediatrics & Adolescent Medicine
– American Medical Association
Published: Jul 1, 2002