Starting all over again, the bereaved parents journey PDF Print E-mail
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Sunday, 19 April 2009 07:38
It will be twenty-two years this December 1st 2009 since my 9 year old son died from an incurable brain tumor. Twenty-two years later I am still a bereaved parent. I am no longer experiencing the pangs of deep grief, yet I still lament and continue to express the emotions of my loss.

Having lost my father at age 15, my brother at age 21, my twin sister and her two boys at 29, I thought life could not get much worse, when three years later my son dies after battling cancer for almost two years. I was changed for life, nothing could have prepared me for the pain I felt and still feel in my heart today. Hello, my name is Mitch, I am a bereaved parent; I started life all over again when my child died; today I am 20 years old. How old are you in your new normal (abnormal)?

                                                              Starting all over again
                                           a chronological view of the bereavement process
                                               -from the perspective of a bereaved parent 

If you want to go the extremes of grief to try and understand the complexities of the bereavement process one should study the bereaved parent. No other loss is more devastating than the death and physical loss of a child. No other loss leaves your heart as deeply and mortally wounded for life. No other loss is more difficult to accept. Even among bereaved parents there is a plethora of differences that set individual grief journeys apart and in how each bereaved parent processes the loss of a child. However we are all forced to accept the unacceptable: the physical loss of our child forever.  
 
We have all heard of the five stages of grief that have been accepted and used worldwide for the most part without question: Shock, Anger, Denial, Bargaining and Acceptance. For the person dying, for parents living the nightmare of watching their child die, or the parents hearing of the news of their child’s tragic death these stages may aptly apply in the initial response to the death or imminent death. But with the ensuing months and years that follow I feel the stages do not adequately represent the true reality of the bereavement process following the death of a child.  

In accepting that initial reality of their sudden death or imminent demise, the stages are a natural progression of emotions to that loss. But for the bereaved parent in the early months and subsequent years following the loss of a child there is no linear progression of stages of grief that is a ‘one-size fits all’. We find that the societies’ accepted stages of grief do not fit our life as we have come to know it. 

 If there are true stages in our long term bereavement process, there are only two: shock, and the road to acceptance. Everything else falls in between. Both denial and bargaining are insults to our intelligence, of course we know our child is dead, we buried them. We cannot strike a bargain with God or anyone that can change that fact. We may continue to experience denial the first moment in the morning when we open our eyes and realize it was not a dream, but we are not in clinical denial; we just don’t want to believe it’s true that our child could be dead.

 Depression and anger are very real emotions that we will experience, but they are not stages, they are tools of survival and a condition of our new normal. Depression brings us to emotional pain levels that we need to experience as we continue to process the enormity of our loss and also serves to protect us from the assaults of the outside world. Anger channeled constructively can be a powerful force for positive change and be a healing process in and of itself. Anger turned inward or manifested in a negative way is concurrent to healing and can only cause more pain.
 
Bereaved parents trying to fit themselves into the accepted stages of grief find themselves frustrated if they have not gone ‘through’ the stages as outlined. Very vulnerable, the new bereaved parent--still somewhat in shock—will begin processing the loss of a child as the mores of society dictate. Following three days of bereavement leave from work, its back to your job and start getting on with your life. For surely in a few months you will be over your loss and will quietly blend back into the workplace, as hoped for and expected by most. At first you will be greeted with embarrassed looks by co-workers who almost hurt themselves by either making an unanticipated hallway dodge, or an abrupt u-turn. Others become ad-hoc bulletin board readers or mutterers hiding behind magazines. Those skillful with avoiding eye contact will utilize their skill, while the less creative will employ urgent rest room needs. These and other methods are all ruses to avoid the uncomfortable contact with the bereaved parent. 

People practice avoidance to avoid bringing up the subject of your loss which they feel will be sure to acerbate your pain. They also have their own concerns that they might be put into a position to have to say something profound and/or healing when they know there is nothing that can be said or done to take away your pain. From time to time, we ourselves play the artful dodger role when we do not want “to go there”. Sometimes the actions we see in others are reflections of our own projection.

 I remember one time seeing a person coming towards me down the hallway at work one morning a few months after my son had died. The young man rounded a corner whistling and glancing cheerfully at the headlines of his morning paper, unaware of his overfull coffee mug leaving a trail behind him. Then I notice that he catches site of me in his peripheral vision and he scrunches further into the pages of his paper. He suddenly became more engrossed in the paper as we neared each other in the narrow corridor. I was feeling down with transitional edginess from a few real bad days and did not want to hear any morning weather reports or exchange cheerful drivel, so I dodged to the right just as we neared each other, he then dodged to the same direction, we both reversed several times and at the same moment we both spoke and said, “Care to dance?”

We each laughed loudly in a very natural way and automatically hugged one another without compunction. He whispered in my ear with the compassion of a Mom tending her sick child, “How are you doing, man?” I pulled back from our brief embrace and looked him straight in the eye and responded that up to this moment I was having a very bad day. “Thanks for the dance”. We both laughed as we walked away my heart lighter, his heart brighter. Sometimes we avoid contact with others just as they seemingly do with us. Just under the surface our racing emotions are left unseen and unexpressed. In a spontaneous or forced contact situation with another, our emotions can be released like the welcome eruption of a festering boil. Although it hurts briefly, we sigh with relief that the dam has finally burst.

The first year back to work is a difficult challenge for the bereaved parent, but remember you are still an infant in your new normal, barely a few weeks old. We get lost in a forever wandering mind of our own internal dialogues. We have no attention span for the language of the real world and depend on Post it notes to remember everything. We trip more; spill things more, lose things, and get lost on a simple errand. We develop techniques to get things done, but the color is gone from our life. Those around us appear to be living in full Technicolor while we are relegated to dull, flat, still and dark monotones of the person we once were; we are changed forever.  
   
 The loss of a child is terminal bereavement. We start all over again and try to figure this our ‘new normal’. It is a new beginning in all sense of the word and our clocks are reset. We construct new concepts, new ways of looking at life…not from the passage of time but from an amalgamation of events and experiences. In the depths of early grief time seems to stand still, so it is with an infant; time has no meaning, all that matters is that we be comforted. As an infant grows to childhood, time will appear to accelerate just as it will for us and we shall cry less often, get up and walk all by ourselves and become curious about the world around us.

In essence I believe we are born again into a new life that starts the moment our child dies and ends the day we die. We start marking time just as a new born baby does, day by day, year by year in a slow progression of discovery of the person left behind. A slow metamorphosis of the psyche, like the Phoenix we rise from the ashes of our despair and become our new found destiny as surely as the maturing baby keeps trying to walk. We need to go through that progression of life developments and stages of growth that a child goes through in becoming an adult; we need to learn to crawl before we can walk. We need to grieve naturally, not stages of grief but stages of life development that takes years--not months-- to progress through. 

 In support of this theory I offer parallels to similar behaviors as drawn by the famous behaviorist and psychiatrist Erik Erickson in 1956 and his 8 stages of social –emotional development of a child from infant to adult. These stages of development are accepted world wide and used in most institutions of higher learning. 

 According to Erickson, the socialization process consists of eight phases- the eight stages of man. Each stage is regarded by Erikson as a “psychosocial crisis” which arises and demands resolution before the next stage can be satisfactorily negotiated. Stages that build on each other, each previous stage supporting the next and so on in a structural sense that demands each stage be achieved before moving on to the next. It is I who postulate their relevance and key to understanding the long term grief process that a bereaved parent is suffered to endure. I believe we are vulnerable and needy as a new born child and we grow into our new normal just as a child takes his first steps.

The world you knew is gone; time stops, your brain is in code blue and reality as you know it fades from conscious thought; you are propelled into a world of disbelief. Taken from a world that you knew and understood, a world of warmth and security, you find yourself head first in a cold painful world of the unknown. It’s hard to see, you are shaking, insecure and frightened of what’s ahead. Tears flow from your eyes, you feel cold and lost and just want someone to hold you and tell you it’s just a dream. 

Am I describing a baby just being born into this world, or a parent just hearing the news of or witnessing the death of their child? It could be both since both describe being thrust into the unknown and faced with the continuing challenges of survival.

Life without our child; our new normal; our new life. Just as a newborn baby needs to adjust to a new environment, so do we. Just as an infant does that first year we shall cry a lot, sometimes way into the night, sleep for a few hours, only to wake up frightened, cry and then sleep some more. You will find people taking care of your simplest needs for you and without compunction, -you offer no resistance. As if in a daze you allow others into your close personal space, finding it feels good to be cared for. You will have accidents, you will be unsure of yourself, you will be scared to venture out, be hesitant with strangers, and testy when you’re tired. And… you’re always tired. You will want to explain what hurts and find you have no words that can express your thoughts. Food will be tasteless and you will eat in a perfunctory fashion, yet coupled with an unabated thirst that cannot be slaked; the scratch that cannot be itched. So we find pacifiers to slake the unquenchable, indefinable thirst that gnaws at our being. Again does this describe an infant or a bereaved parent functioning at the base primal level of 1st year survival?

  *Actual Erickson Developmental Stages entitled in Bold Print


Stage One: Learning Basic Trust Versus Basic Mistrust (hope).
  The first year

The world, God, Kismet or the fates of life, have stolen our child from our arms, caused them pain and continues to assault us with more pain and deprivation. How do we ever trust again? Baby steps; we learn all over again. We will try to stand and fall, we will try to walk and stumble, we shall try to explain and cry in frustration, not finding the words that anyone can understand. We are dependant on others for our own survival; we reach out for anyone to pick us up and pat us on the back and make it all right. We want to be comforted on our own terms until we can understand this new world we are forced to accept. Sometimes this comfort comes from perfect strangers

If we are well handled and cared for, we shall develop optimism, a sense of hope and we grieve naturally. If the grieving is delayed, so will the first step towards optimism and the whole bereavement process will be chronologically delayed. Sometimes without help, a bereaved parent can be stuck forever, never finding hope, never building on that next stage of development that we must also go through. That is just the first year following the loss of a child. At the risk of being glib, we then head into the “terrible twos”, our second year of grieving that is more often worse than the first.

Stage Two: Learning Autonomy versus Shame (Will)
Two year to four years

Every morning when you open your eyes you get a mini-jolt that your child’s death was not a dream. On the second year of healing every day’s calendar memory reminds us a year ago on this day our child was dead. Today is real and with it comes another full day of painful memories just waiting to rip your heart apart. The world thinks you are on the mend while you are just beginning to understand its going to take a long time; a very long time. The second year calendar days mark time with memories of the sting of their death and the ensuing life change that followed. It is like starting all over again but without the numbness, and for the most part, the world now expects that you should be over it. 

 The terrible twos, the second year of healing, when anger, frustration, apathy, anxiety and depression play tag team for control. The loss begins to become real, and separation anxiety kicks into high gear. Extreme concentration becomes necessary in order to accomplish almost any task, and every task seems to deplete you physically. You will have accidents, lose things, and forget appointments, trip, stumble and fall. 

You want to feel better, be able to talk normal, care about things again, but yet it’s hard to leave behind that initial, albeit painful but protective cocoon of grief that has protected you for so long. A butterfly cannot turn back into a caterpillar no matter how hard he tries and may be fearful of breaking free of its cocoon. Just as a baby longs for independence, it still clings to and longs for the security and comfort of bottle, crib and someone who cares. We struggle with many mixed emotions during our second year of healing.

We can fly into a rage at a moments notice, cry uncontrollably out of the blue, say NO to everything, don’t eat what is on our plate, we want our nap, we scream out, “Its not Fair”, we pout, we are difficult to be around, we sometimes run around like a chicken with its head cut off and we fall into an exhausted pile and sleep. Begging to be left alone one minute, and then begging for hugs the next. Are these symptoms of our second year and third year of our bereavement process? Or a two year old learning autonomy? Hard to tell one from the other isn’t it?

Stage Three: Learning Initiative Versus Guilt purpose)
Five to seven Years

We as bereaved parents entering our 5th of year of experiencing life without our child will usually feel we have hit a benchmark, a milestone in recovery from our devastating loss; yet still feel without purpose. If active steps have been taken to integrate our loss into our new life, by this time we are starting to broaden our experiences, reaching out to the world and see how we fit into it. We may go back to school, change careers, start a foundation, lead a recovery group, get involved, and dare I say make plans for the future. Imagine! We can have a life again. 

As an inquisitive youth we are discovering the nature of our selves (our new normal) and naturally gravitate toward experiences that can bring interaction with the world. To hunger for knowledge, love, and pleasure, to experience growth and maybe even have fun again. To become involved with support groups, attend meetings, as a leader and/or contributing follower, all show a desire to invest in life again. At this point you may have discovered ways to help process your loss that helps to heal or support others in their pain or grief and found relief yourself in the process of the giving.

Not working on proactive ways to heal from your pain you may become stuck in unresolved anger or apathy and not want to move beyond a previous stage, staying dependant on others for your needs and avoiding interaction with the world that has hurt you so badly; picking up your softball, glove and your bat and slinking back home.

Stage Four: Industry Versus Inferiority (Competence)
Seven to twelve years

Seven to twelve years following the loss of your child you have more than likely have fully integrated back into the work place and the world in general. Your loss to most people is not known or forgotten about and is ancient history. At this point in our journey we may be even be playing catch up with the world that has moved on so quickly while we were absent from it. At this juncture of our bereavement process we are honing the new skills we have learned in our survival of the horrific loss we have to bear. Our social skills improving, once again we hunger for more of what life has to give, experience more love, more joy, to see more of the world. We are willing to take on tasks, become a team player once again and work hard to accomplish goals.

If on our grief journey we have not gone through an earlier developmental stage of our ‘new normal’ we may still be caught in a negative, guilt based position of being defeated and have no thoughts to the future. With most thoughts locked in the past we might be stuck in anger without resolve and used to living life feeling inferior, beaten, with no hope of redemption. Life sucks; I have no friends who understand; I am lonely. I am bitter. I am bogged down in the past and simply do not care!

Stage Five: Learning Identity Versus Identity Diffusion (fidelity)
Thirteen to twenty years

From thirteen years to twenty years in your bereavement process and if you have experienced every previous developmental stage of life progressions in your new normal, you may finally have come to terms with who you are now; the transmogrification of your post child- loss identity almost complete. You have integrated into your new normal and how the loss of your child has changed your life. You accept that change and build on it, even look for growth opportunities that are presented to you in your new life. You have the strength to take on causes and make positive changes. At the same time you may still have feelings of self-doubt and despair. You may still not want to move forward, frightened you may forget. This insecurity in moving forward may cause one to long for the security of the old days of early grief despite its’ extreme pain. 
By this time in the process of your bereavement you may have allowed yourself to love again. You may have lost relationships with many friends, some even the closest of friends or relatives as well as other acquaintances lost through attrition. It may be by our choice that we have lost friends or by their choice. Sometimes, it is no-ones choice and bonds just dissolve; lost in the sheer battle to survive our loss. You may experience further loss from divorce in a marriage that could not survive the storm; you may have children in college, married or have simply moved away to experience their life; you could even have possibly suffered more personal loss by death. 

Stage Six: Learning intimacy Versus Isolation (Love)
Twenty years and longer

By now in your journey you have learned to value more than ever the relationships that survived and the new ones that were created. New friends, more children and or grandchildren, new marriage, or a new job may already be an integral part of your life and you have felt joy again.

As bereaved parents at this point in our journey we may find our old selves and our new normal selves merging onto the same road. We integrate the wisdom of our former and present self together and we meet the challenges of the life as we now perceive it. This is where we truly get back on the sidewalk and walk neck and neck with the fortunate others with our head held high and meet life’s challenges on an equal and level playing field again…only we have an edge. No one can hurt us anymore than we have been hurt! We can take the risk to be ourselves fully, play no roles, and strive to make a difference where we can without remorse.

If you have not completed these stages in life progressively with or without experiencing a loss in your loss you may be stuck forever in one or another stage and may never find true joy or the meaning to your life. We always have a choice to make efforts to back up a stage or two and start over.

                                 Stage Seven: Learning Generativity Versus Self-Absorption (Care) 
 
In our new normal, the last two stages can give each of us an opportunity to experience phenomenal growth in areas of both creativity and productivity. After all, by this time a parent has not only survived the unnatural experience of the death of a child, but many parents have suffered untold challenges in many other areas of their lives as well and somehow have been able to move forward on the road to a fulfilling life. Some parents may become dependent on prescription medications or alcohol and have to fight their way back to normalcy and sobriety in the midst of their grief work. Having undergone a myriad of other losses in addition to the loss of a child and having survived huge life changes, the typical parent has by this stage become a pillar of strength. Although still pitied by many they have garnered much respect and awe as a survivor of the unthinkable.

At this stage of your ‘natural life’ merging with your ‘bereaved life’, if you have not already done so, you can take your “Mulligan” and start again. After all, you have survived the loss of your child and nothing else in life can be so hard. Grief has forced you to come in contact with your entire range of emotions, grief has taught you how to keep on working when you could not care if you starved and or became homeless; grief taught you how to respond to others around you in socially appropriate ways when you could have cared less; grief forced you to create new innovative ways to jump start your life again. Because of your journey you may have recognized for the first time the music that truly emanates from your heart and your feet long to dance to its tune. 

                                               Stage Eight: Integrity Vs Despair (Wisdom)

This last stage that Erickson outlined we reach or do not reach regardless of our grief journey. I feel every one of us goes through, or does not go through, all these stages of human development in the process of experiencing life on this planet. If we experience the first six stages of development fully and sequentially the last two stages will only enhance our lives and the lives of those around us and we will find ourselves making a difference in this world. This last stage is up to us, what we have learned on the journey and how we choose to use that knowledge.

When you experience the loss of a child your life is changed forever and in essence you start all over again in the developmental stages of life. Just as in your own birth experience and its developmental stages of life that you complete or do not complete are so unique, so it is with your bereavement experience for the loss of a child. Everyone’s journey is so different. What is the same although is the lifetime journey to find purpose in our lives. The loss of a child can cripple you forever if you let it. Life can cripple your life forever, if you let it. If we bury our life with our child’s body, then two lives are wasted, joy is non-existent and the world itself diminished. 

Your personal journey of development in your new normal chronologically will be varied as we are. Delayed active grieving such as in the case of murder or a negligent accident may propel parents into many years of legal battles and painful memories that continue to bombard their psyche. In cases such as this, processing of grief may be delayed and the journey lengthened. Conversely active grief work, such as taking on a bereavement group leadership role, creating a foundation, volunteerism, all can accelerate the process and one may find that they are moving through the developmental stages more rapidly.

If we create a legacy in our child’s name with our life, we in essence start a new relationship with our child and in the process give them life. When we can continue to be a part of their life and recognize our continual part in it -joy will come into our heart once more. It may take a lifetime or a few years but joy will eventually return. When we feel joy again, our love is validated, the world is enriched and we find tomorrow is not so scary.

If we have breath… there is reason to love.
If we have love…there is reason to live.
If there is reason to live
…there is reason to give

Turn on you heartlight
-Mitch Carmody
 
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