The death of a child is largely considered to be the most excruciating type of loss living beings can experience. Not only does it go against the "natural order" of life as it expected, but it creates a complicated grief. Coping with the death of a special needs child can create even more havoc in the grief process.

While pregnant, most parents develop hopes and dreams, ideas and longings for what their anticipated offspring will do and who they will be. Maybe a future president, a celebrity, or a respected athlete. A wife, husband, mother or father perhaps. This is a natural phenomenon that is encouraged throughout western society. Unfortunately, each year, thousands of families will be devastated by a diagnosed special need. According to the March of Dimes, over 120,000 or approximately 1 in 33 babies "in the United States are born each year with birth defects (1). A birth defect is an abnormality of structure, function or metabolism (body chemistry) present at birth that results in physical or mental disabilities or death." Out of these, hundreds of children will be given a terminal diagnosis and require intense medical intervention in order to maintain an acceptable standard of quality of life.

These needs, the diagnosis, and everything that goes with it are devastating to a family. It is at this time the grieving process begins. Parents, grandparents and all family members and friends must first grieve the loss of the child they thought they were going to have. The hopes, dreams, desires and expectations have been lost and a mourning period must be encouraged by professional and social supports. This grieving process has been referred to as anticipatory grief or mourning. In "The Last Dance: Encountering Death and Dying" by Lynne Anne DeSpelder and Albert Lee Strickland, anticipatory mourning "can be understood as a reaction to being aware of an impending loss. Therese Rando defines anticipatory mourning as encompassing both the awareness of an impending loss and the recognition of associated losses" This grief process, while necessary, is in some ways like a warm up for dealing with the actual death of a child.

After days, months or years of caring for a child with special needs, there are many issues that parents, as caregivers, are faced with. Among these can be a feeling of expectation or waiting for death. Wondering when, how and where it will happen, for example. When the death actually occurs, whatever the circumstances, there is often a feeling of relief intertwined with the other anticipated reactions of loss. The feeling of relief often can lead to feelings of guilt for not "feeling the right way" or "reacting normally". This is what makes the grief complicated.

In coping or helping others cope with this type of loss, it is imperative to recognize the complicated grief and identify as a normal reaction. There is not a magic formula or specific steps parents and families take to "get over" this type of grief. Having a solid professional and social support system is able to recognize and understand the additional feelings and reactions that complicated grief comes with is an important step in managing the mourning period. Additionally, there are many resources available to parents and extended family members through local hospice programs, hospitals and on line support groups that can offer support.

Learn more about this author, Jennifer Volkers.
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