The Journey of Grief For Parents and Families Who Have Children With Special and Unique Needs

The Journey of Grief For Parents and Families Who Have Children With Special and Unique Needs

“There is a sacredness in tears. They are not the mark of weakness, but of power. They speak more eloquently than ten thousand tongues. They are the messengers of overwhelming grief, of deep contrition, and of unspeakable love.” – Washington Irving

There are many misnomers concerning the human experience with grief.   As a culture we are inclined to think about grief solely as we encounter the death of someone who we deeply love.   However it encompasses other situation and circumstances and is expansive across the spectrum of loss.   We have witnessed grief on so many levels in the parents who we have had the privilege to work with over the years who have children with special and unique needs.  Some of these include parents who have children with an addiction, a child with a physical or emotional diagnosis, an eating disorder or a learning disability, we have even seen the prevalence of grief as children come out to families as LGBTQ.  We believe that grief is much broader and not limited to the experience of death and that it is in fact a universal language that countless people know and experience firsthand.  We like to think of it in these terms:

“Grief is the conflicting feelings caused by the end of or change in a familiar pattern of behavior.” – Russell Friedman

 I will never forget the flood of emotion that followed that moment in time when we heard those words for the first time, “It is quite possible that your son has autism”.  I particularly remember the evening that followed.  In the darkness of the night as I lay in our bed with nothing but the silence engulfing me, I felt nothing but desperation, fear, anxiety and intense pain.  My chest was heavy, it was difficult to breathe and as much as I wanted to sob with tears they just wouldn’t come.   I felt empty, alone and desperate.

I recall saying to my wife, “Just please tell me that it is all going to be alright!”

This was not only an impossible request to fill.  I was asking her to provide me with something that she was unable to give, namely a sense of assurance and comfort in the midst of the pain and grief  I was experiencing in the wake of the news that we had just heard.   Her grief journey had just begun too!

For Lisa Goyette (co-founder of Celebrate Hope) and her husband Dave, they too encountered their own experience with grief as they traversed the journey with their son.  Though the experience and journey with grief looked differently for all four of us, it was grief nonetheless as we all experienced “the conflicting feelings that were caused by the end of or change in a familiar pattern of behavior.”

In our seminars and our coaching of parents and caregivers we talk a great deal about the “movement of grief”.  We have discovered that there is a prevalent misconception about grief, namely that it only lasts for a period of time, that it eventually comes to an end and then goes away. Further we teach that it is not a unilateral process in which we move from one stage of grief into the next, never to revisit the same emotion twice.   This is ideology is the farthest from the truth.  Grief is a not a destination, it is a movement.   It is a personal and individualized movement that is unavoidable, a journey that we must endure.   It is on that same journey that we will experience a wide variety of emotions , many of which we will revisit time and time again as we continue to journey through life.  And for those who have children with special and unique needs we know this path all too well!   It is those hopes, dreams, aspirations, visions, experiences, opportunities that we once held for our children that may never come to pass that initiates us into the movement of grief.

Over the next several weeks in our blog we will look closely at each of the 7 movements of grief; admission, shock and denial, pain and guilt, anger and bargaining, depression, reflection and loneliness, reconstruction, and finally acceptance and hope.  We look forward to walking with you over the next several weeks.   We invite you to contact us to learn more about how we partner with parents and caregivers of those with special and unique needs, not to mention educational systems, non-profits and corporations as we empower parents to move from a place of crisis to a place of hope.

Be sure to check out our website at http://www.celebratehopellc.com. Feel free to contact us by email at http://lisa.goyette@celebratehopellc.com or http://john.ball@celebratehopellc.com.  You may also reach us by phone (248) 330-8493.