Karen Graziano, CSW

The loss of the idealized perfect child can impart a depth of feelings upon families that is often unknown to others.  The shattering of a dream, of hopes needing to be redefined, a complicated pregnancy or delivery, genetic mishap or tragic accident which escorts parents into a netherworld of confusion, denial, self-sacrifice, exhaustion, notwithstanding feats of courage.  How individuals embrace these feelings can set the tone for the future both on a personal and ultimately, a societal level.  Optimally, one outcome may be acceptance; of oneself; of others and acceptance of fortune.

As within the grieving process, there are transitions individuals, parents and other caregivers may experience:

  • Why Me – Many people feel as though they have done something wrong and are being punished for an unknown deed.  They feel that they have either been chosen to grieve or have been blessed as a “special person,” dependent upon whichever take is assumed.

  • It’s All Your Fault – Any extremely stressful situation increases tension in the marital and familial relationship.  This is common.  Many parents tend to affix blame on the partner alluding to the fact that it is in the genes, social make-up or has to do with why “the sky is blue.” People sometimes feel better if the unknown can be explained, and they often struggle to feel better.

  • To Be Or Not To Be… - Some parents cope by sacrificing themselves, siblings, extended family members and/or friends, for the sake of the member most in need. Perhaps, this cannot always be avoided by caring parents. However, it seems that often in these circumstances and emotional expressions that guilt and a myriad of deep feelings are at play.

  • Shop Till You Drop – There is always a quick fix, in our society, is there not? Some parents will resort to doctor shopping. However, a distinction can be drawn. It seems that to visit many doctors in seeking a “magic cure,” harboring unrealistic goals might qualify. Parents seeking wisdom, skill and an understanding benevolence would seem rather, to be informed consumers of specialized medical care.

  • Inclusion – More transitions unfold.  Many efforts on behalf of children with special needs have yielded a wave of growth for our societies as we witness inclusion within the community, whether it be in school, housing, or the warm smile of a stranger as opposed to that often encountered “blank stare.”  If we apply this to the family, we see an adjustment where each member’s needs are addressed in the context of equality.

  • The Healing Process – It makes me think of the childhood game, “Pin the Tail on the Donkey.”  When the blindfold is removed, everything becomes clear.  But it is not that easy, as parents find inner resources to call upon, attempt to gain some control, establish a more meaningful and supportive relationship with their child, attempt to deal with the world they have been thrust into, while maintaining a modicum of their lifestyle.  It helps to relate to others in similar circumstances as isolation, although common, is often stultifying.  It is also important to practice what I refer to as “advised conscious awareness,” or to soul search, learn from others, and work through feelings.  That energy may be channeled into other constructive outlets: The birthing of a true advocate, perhaps.

How does one cope with the engendering of anger, sadness, grief, or pain and yet still abound with love?  It is a journey of the mind, body and spirit.  Time does eventually heal.  Reaching out to others, whether it be to friends, family and/or agencies can help.  Support services are available for parents and children to do just what the term states; offer a bolstering, an anchor, when needed.  A social worker is the appropriate professional to help negotiate this complicated mire.  Whether it be counseling, accessing entitlement programs, equipment needs, or just a knowing heart, a social worker can help you pull it all together.

As parents work through the strong feelings brought about by an unexpected stroke of fate, I would like to leave you with a quote from William Wordsworth… “though nothing can bring back the hour of splendor in the grass, of glory in the flower, we will grieve not, rather find strength in what remains behind…”  It is your courage and no one can take it away.

Karen Graziano, CSW is a social worker with the Long Term Home Health Care Program at St. Mary’s Hospital for Children. You can contact her at St. Mary’s Hospital for Children, Long Term Home Health Care Program, 29-01 216th Street, Bayside, New York 11360

March 2001

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