Grief not shared or acknowledged by others can be the hardest to bear. Christopher Pramuk's "A Hidden Sorrow: Praying through Reproductive Loss" brings to the Christian Community's awareness the piercing sadness of stillbirth or of infants who day shortly after being born. Although the support of God working through human families and friendships can be comforting, it is clear that one never gets over a loss such as this. Professor Pramuk recalls his 103-year-old grandmother, who until her last days recalled five of her siblings whose lives never reached adulthood.
There are often two incompatible notions we hear about grief, both from professionals and common lore: one is that grief is time-bound, while the other is that is is chronic. Although each person grieves uniquely, persons and families experiencing what Professor Pramuk writes about may share aspects of grieving with parents who raise children with genetic anomalies or who suffer from mental retardation. One father wrote about how his experience as the parent of a retarded child did not fit with the view of parental adjustment suggested by the professionals:
Parents of retarded children, the theorists tell us, learn to live with their children's handicaps. They go through stages of rejection, moving through shock, guilt and rejection to the promised land of acceptance and adjustment.
My own experience as the father of a retarded child did not fit this pattern. Instead, it convinced me that most people seriously misunderstand a parent's response to this situation. The standard view does not reflect the reality of parents' experiences or lead to helpful conclusions.
Professionals could help parents more--and they would be more realistic--if they discarded their ideas about stages and progress. They could then begin to understand something about the deep, lasting changes that life with a retarded son or daughter brings to parents. And they could begin to see that the negative feelings--the shock, the guilt, and the bitterness--never disappear but stay on as a part of the parents' emotional life.
Most parents, I believe, never fully resolve the complexity of feelings. They don't 'adjust to' or 'accept' that fact, at least not in the way psychology books describe it.
This parent was quoted in the classic article "Chronic Sorrow Revisited: Parent vs. Professional Depiction of the Adjustment of Parents of Mentally retarded Children" by Lynn Wikler, Mona Wasow, and Elaine Hatfield [American Journal of Orthopsychiatry, 51(1), 1981, 63-7]. They sought to discover just how "time bound" and "chronic" aspects of sorrow were experienced "by the parents themselves." An interesting discovery was that—while sorrow might be chronic—it was often not continual or continuous but rather was evoked or exacerbated by certain developmental experiences.
There were ten specific developmental crisis points for the parents of retarded children where grief and sorrow were experienced intensely: 1) diagnosis from a specialist; 2) time when child should have begun walking; 3) time when child should have begun talking; 4) younger brother or sister overtakes the retarded child's abilities; 5)serious discussion of placement outside the home or actual placement; 6) beginning of school attendance; 7) management of crises (behavior problems, seizures, health problems) unique to the retarded child; 8) onset of puberty; 9) 21st birthday, which for others is a milestone of independence and entry into adulthood; and 10) serious discussions about guardianship and care for retarded child when parents die.
Within each Christian community there may be parents who experience hidden sorrow, chronic sorrow. This may be brought about by having experienced a stillborn child; it may be due to infertility or it may be due to raising a child who is mentally retarded. While others in the community may think that grieving has been dealt with, these parents themselves know that hidden sorrow becomes chronic sorrow and can become sharp suffering or even incapacitating grief at future times far removed from initial grieving.
William Van Ornum