THE GRIEVING PARENT RESPONDING TO CHILDHOOD DEATHS DISABILITY

THE GRIEVING PARENT: RESPONDING TO CHILDHOOD DEATHS, DISABILITY OR DISAPPEARANCE H. Norman Wright

The Ides of March

“My family died last week. What we knew as a family for the past 12 years is gone. It fragmented—fell apart. I thought I had just lost my son, but then it dawned on me. It was both—Ted and the family we had. ”

LOSS AND TRAUMA IN THE FAMILY It’s usually not one person impacted by a death but an entire family unit. Unique problems arise. The balance of the family system is disrupted. What if a family member is terminal?

LOSS AND TRAUMA IN THE FAMILY Each member of the family unit differs in his or her response and even acceptance of the news. Some members will respond well to the needs of the dying person, while others would rather not acknowledge the impending death.

LOSS AND TRAUMA IN THE FAMILY No matter whether you meet with a family of three or four or a group of eight or ten, each one will respond in a unique way, even though they have all been exposed to the same loss.

LOSS AND TRAUMA IN THE FAMILY But have they really been exposed to the same loss? Perhaps, but perhaps not. It could be that you’ve already experienced this in some of your own grief events. Each person’s grief response is affected by numerous factors, and by its DNA. It helps to look at a mourner and realize all that has come into play.

THE FAMILY UNIT Part of the difficulty will be family differences to the event. “It doesn’t help to talk about it. ” “You can talk about it, but not with me. ” “Let’s just move on. ” “We’re doing fine, but thanks for asking. ” “If your not sharing feelings you’re not responding in a healthy way. ” “Let’s let others help us. ”

FINDING BALANCE AFTER LOSS � Will we continue to participate in the same recreational activities? What new things will we do? � Will we keep going to the same places we used to—or has the meaning changed too much? � Will we still feel comfortable with our family and friends? What things can we do to help develop a new level of comfort?

FINDING BALANCE AFTER LOSS � Will we find it difficult to fit in with other intact families? (Where does a family who lost a child fit in? Where does a family who lost a parent fit in? Now that the divorce is final, where are other divorced families we can connect with? ) � Will we stay in the same house, or will we need to downscale or move? What will help make these changes easier on us?

SEVEN CHARACTERISTICS OF THE FAMILY THAT SURVIVES LOSS 1. 2. 3. 4. Surviving families learn from others who’ve made it. Surviving families express their emotions in healthy ways, recognizing that tears are a gift from God and don’t need apology. Surviving families don’t blame one another. Surviving families look for solutions rather than create a war zone of blame.

SEVEN CHARACTERISTICS OF THE FAMILY THAT SURVIVES LOSS 5. Surviving families don’t allow themselves to become bitter, they refuse to live in the past or focus on the “unfairness. ” 6. Surviving families resolve their conflicts. 7. Surviving families cultivate a biblical attitude toward life.

Loss of a Child through Death Sudden or Terminal Sudden is a Crisis or a Trauma

The Normal Crisis and Sudden Loss Pattern Phase I Impact Phase II Withdrawal/ Confusion Phase III Adjustment Phase IV Reconstruction/ Reconciliation Emotional Level Time- Few hours to a few days Days to weeks Weeks to month Months Response- Should I stay & face it or withdraw Intense emotions. Your positive feel drained, anger, thoughts begin sadness, fear, anxiety returning along depression, rage, guilt. with all the emotions. Hope has returned. Self-confidence builds. Thoughts- Numb, disoriented. Insight ability limited. Thinking ability limited. Uncertainty and ambiguity. You’re now able to problem solve. Thinking clearer. Direction you take to regain control You search for what you lost. Bargaining-wishfulthinking. Detachment. You begin looking for something new to invest in. Progress is evident. attachments are made to something significant. Searching Behavior- Often reminiscing. Puzzled, unclear. You can now stay focused and begin to learn from your experience. You may want to stop and evaluate where you’ve been and where you’re going.

� Loss by infertility � Loss by abortion � Loss by adoption � Loss by stillbirth � Loss by SIDS � Loss by disability

� Loss by disappearance —parent has remarried and moved thousands of miles away —a parent has remarried and wants nothing to do with their former spouse’s family

—a child runs away Each year approximately 800, 0000 children are reported missing in America, including some who are lost, injured, have run away from home or have been abducted, according to the National Center for Missing and Exploited Children, the nation’s clearinghouse of information about mission children. —a child blatantly disrespects your beliefs and values

� Loss of parental values � Loss by trauma

5 CRIES IN THE LOSS OF ANY CHILD � “I hurt” – The cry of pain � “I want” – The cry of longing � “I need” – The cry for supportive love � “I don’t understand” – The cry of “Why? ” is the cry of lament

Job teaches us the lesson of grief we will learn from lamenting is that the act of lamenting, protesting, and even accusing God through the prayer of protest is still an act of faith. It’s an appeal to the loving God’s loving-kindness. Lament keeps the door open, keeps Job on the dance floor with God till the music is over, until the two tunes are resolved. Michael Card, A Sacred Sorrow

5 CRIES IN THE LOSS OF ANY CHILD � “What does it all mean? ” A cry for significance

LOSS OF A CHILD —Death robs us of the present and the future with our child or spouse but it has no grip on the past – which is why our memories are one of our greatest gifts. � You lose – hope, dreams, expectations, fantasies, wishes and in some cases the end of a family line

LOSS OF A CHILD � You lose part of yourself � With the death of your child you feel as if you have failed � Loss of sense of identity � Guilt – most prominent feature for many

LOSS OF A CHILD Parent grief unlike any other – expect grief to be more intense and last longer than others 1. Problems - “Growing up with your loss. 2. How do you mark your life – events and accomplishments of children. These bring guilt surges 3. Little social support 4. Replacement children

LOSS OF A CHILD 5. Idealize the lost child 6. Over-control with other children 7. Resent – other children haven’t grieved enough 8. Grief of siblings, grandparents 9. Face in the crowd syndrome 10. Shadow Grief

DEATH OF A CHILD The death of any child is a monumental assault on your sense of identify. Because you cannot carry out your role of preserving your child, you may experience an oppressive sense of failure, a loss of power and ability, and a deep sense of being violated. Disillusionment, emptiness and insecurity may follow, all of which stem from a diminished sense of self. It’s a loss of a sense of identity.

DEATH OF A CHILD Guilt the most prominent feature If accidental – guilt If genetic or unexplained medical – guilt “I gave her the illness. ” cancer Shouldn’t have given aspirin.

SECONDARY LOSSES —You lost someone who may have taken care of you in the future. —Handling the remarriage of a son or daughter-in-law and they move and you lose your grandchildren. —The significant “date” losses and developmental—graduation, games, proms – we see other children moving on. —Ambiguous and disenfranchised losses

MOTHER’S RESPONSE TO THE DEATH OF A CHILD � For fear of “being judged insane, ” as one book put it, most mothers choose not to voice what turns out to be the “very powerful”- and also very normal – urge to steal another mother’s child. � It is also not uncommon to feel bitterness or a sense of injustice when one loses a child. So if you find yourself thinking, “Why me? , Why my child? , Why our family? ” you are in good company.

MOTHER’S RESPONSE TO THE DEATH OF A CHILD � Some parents describe “an irrational sense of self-blame” following the death of a child. We replay the what if’s of our child’s life and death a thousand times a day. Almost always self-blame is misplaced.

MOTHER’S RESPONSE TO THE DEATH OF A CHILD � Grief over the loss of a child lasts longer than any other kind. It heals more slowly and causes the most monumental disruption for those who survive. This is because a child is part of what psychologists call our internal psychological structure – meaning that in a way part of the parent dies, too.

MOTHER’S RESPONSE TO THE DEATH OF A CHILD � Most experts believe that loss and helplessness are the greatests any human can face. A child’s death is off the charts in both categories. � You may be strong, smart and highly resilient. But nothing can prepare you for the loss of a child.

MOTHER’S RESPONSE TO THE DEATH OF A CHILD � One reason the loss feels so enormous is that a child’s death violates an implicit generational contract, that our own children will survive us. �A child’s death also challenges the fundamental instinct of parents to protect their child. That is what we are supposed to do, isn’t it? To make the world safe? The feeling that we have failed to do so can haunt us, compounding our sadness.

MOTHER’S RESPONSE TO THE DEATH OF A CHILD � In an era of medical miracles, we are less culturally conditioned to expect a child’s death than in previous generations. On the contrary, the prevailing assumption is that science and technology can and will work wonders. Taken from After the Darkest Hour the Sun Will Shine, pp. 108 -109

PROBLEMS IN MARRIAGE If your marriage was close before, that strength now may be a disadvantage. It makes both of you particularly vulnerable to the feelings of blame and anger that grievers often displace onto those nearest them. � Communication problems often develop in reaction to the grief: � One of you asks the other unanswerable questions, such as why the death occurred.

PROBLEMS IN MARRIAGE � One of you avoids communicating with the other out of fatigue or fear it will upset that person. � One of you makes irrational demands, such as asking the other to take away the pain. � One of you makes rational but unrealistic demands, such as requesting that one of you assume all the duties of the other.

PROBLEMS IN MARRIAGE � Differences in how each of you grieve – Instrumental – Intuitive � Differences also can be expected in other areas of grief: � How you express your feelings—one of you may want to talk about your child, while the other may want to avoid discussing him.

PROBLEMS IN MARRIAGE � How you carry out your work or daily activities—one of you may find comfort in returning to work, which may provide a respite from your grief, while the other may be overwhelmed by responsibilities that only highlight the loss. � How you relate to things that trigger memories of your child—one of you may want all the photographs to be removed from the home, while the other will want to make sure they are all hanging up.

PROBLEMS IN MARRIAGE � How you respond to your surviving children— one of you may withdraw from them in an attempt to protect them from your grief, while the other struggles to remain open to them, appropriately share grief, and remain as normal as possible with them.

PROBLEMS IN MARRIAGE � How you deal with the support of others— one of you may want to attend self-help group meetings, while the other prefers not to discuss your deceased child and avoids all other bereaved parents.

PROBLEMS IN MARRIAGE � How you cope with your sexual relationship —one of you may be interested in resuming sexual intimacy, while the other may feel uncomfortable and conflicted about having sex. � How you react to socializing and resuming your life—one of you may feel that if you ever enjoy life again you are betraying your child, while the other feels life must go on, and some enjoyment is healthy.

PROBLEMS IN MARRIAGE � How you search for the meaning of what has happened—one of you may find comfort in religion, while the other may give up former religious beliefs. � What problem areas you experience in grief —one of you may have difficulty in letting out feelings and asking for support, while the other may have difficulty in expressing anger. (Original Source Unknown)

SIBLING LOSSES 1. Unique for each child – like adults. 2. Some feel they have aged 10 years in 10 minutes. 3. A major hole in their life – more time with the sibling than with parents. 4. May feel restricted – may now be an only child.

What if you are a Stepparent? Single parent? Grandparent?

PHASES OF GRIEVING FOR A DISABLED CHILD � Feelings of Denial � Feelings of Anger and Fear � Feelings of Confusion � Feelings of Powerlessness � Feelings of Guilt

Dr. Robert Naseef, a parent of a disabled child, describes a common experience: “For all parents, a child’s birth is a time of great joy and optimism. ‘Your child has a disability’ is one of the most crushing statements that one can ever hear. Your child can be the source of great joy or devastating sorry. No matter whether the disability is mild or sever it crushes you for a while and you probably tend to hope for the best, but imagine the worst. ”

Dr. Naseef goes on to say: There are different incidences of odds for each disability, but when it happens to you, it always 100%. You are totally surrounded by your fate, as the father played by Nick Nolte in the movie Lorenzo’s Oil highlighted when he said that he felt like “a loser in the genetic lottery. ”

Or what if your child was healthy at first, and then the disease or disorder or accident occurred?

STAGES OF ADJUSTMENT Disability is never as clear-cut as death. Grief usually mingles with confusion and uncertainty. Living with a child who has special needs can be like living inside a pressure cooker. The less the child is able to function, the greater stress on every other family member. Many losses are hard to deal with, but the loss of your child in this way causes mental torment. There is no one right way to grieve

STAGES OF ADJUSTMENT � Dealing with Others’ Negativity � Experiencing Traumatic Life Changes � Bargaining for a Cure � Living with Chronic Sorrow

SIBLINGS Siblings experience the profound unfairness that is part of their daily life. Sometimes they find their own possessions taken or destroyed a disabled sibling who is out of control. Too often when there is a disabled child, no one things about what’s going on and why.

SIBLINGS Many children hide their distress and have to deal with it year later, in adulthood. Children raised with a disabled sibling often feel a strong sense of responsibility, either self-imposed or placed there by the parents.

SIBLINGS Siblings face numerous pressures we don’t even think about. What does a child say to others when asked about a younger brother who just died? What does a child say to others when asked about a sibling who doesn’t look disabled in any way but is nonverbal. Sometimes the less severe the impairment, the more difficult it is for the sibling.

LOSSES �I was the father of a son, but I didn’t know what it meant to be the father of a son. � Never being called “Daddy” or “Papa” or any term. � Not having my family name continue. � Not playing baseball with Matthew. � Not taking him or teaching him to fish.

LOSSES � Not experiencing all the normal developmental stages. � Not having the “father and son talk. ” � Not hearing him sing. � Not seeing him accept the Lord and grow spiritually. � Not being able to baptize him.

WHEN A CHILD IS DISABLED The disabled are the sign that all men have significance beyond what they can be, and do for us. To see the disabled honestly is to remind us that we cannot earn significance for our lives, it is a gift of God. Christ makes it possible for us to love our disabled brothers in a way radically different from the possessive love that thrives on the need to be needed.

WHEN A CHILD IS DISABLED To love the weak in Christ is to dare to be free and to be free from dependency on their needs. God wants us to see each other as significant only as we exist in Him. we are each God’s gift to the other. R. Scott Sullender Losses in Later Life

BALL OF GRIEF

THE CRAZY FEELINGS OF GRIEF The “crazy” feelings of grief are actually a sane response to grief. The following examples are all symptoms of normal grief: � distorted thinking patterns, “crazy” and/or irrational thoughts, fearful thoughts � feelings of despair and hopelessness � out of control or numbed emotions

THE CRAZY FEELINGS OF GRIEF � changes in sensory perceptions (sight, taste, smell, etc. ). � increased irritability � may want to talk a lot or not at all � memory lags and mental “short-circuits”

THE CRAZY FEELINGS OF GRIEF � inability to concentrate � obsessive focus on the loved one � losing track of time � increase or decrease of appetite and/or sexual desire � difficulty falling or staying asleep

THE CRAZY FEELINGS OF GRIEF � dreams in which the deceased seems to visit the griever � nightmares in which death themes are repeated � physical illness like the flu, headaches or other maladies � shattered beliefs about life, the world, and even God

SLEEP When you lie down you shall not be afraid; yes, you shall lie down and your sleep shall be sweet. Be not afraid of sudden terror and strong, nor of the stormy blast or the storm and ruin of the wicked when it comes [for you will be guiltless], For the Lord shall be your confidence, firm and strong, and shall keep you foot from being caught [in a trap or hidden danger]. Proverbs 3: 24 -26, AMP

SLEEP You will not be afraid when you go to bed and you will sleep soundly through the night. Psalm 3: 5, Good News Bible If I’m sleepless at midnight, I spend the hours in grateful reflection. Psalm 63: 6, The Msg When my anxious thoughts multiply within me, Your consolations delight my soul. Psalm 94: 19 I will lie down and sleep in peace, for you alone, O Lord, make me dwell in safety. Psalm 4: 8

SLEEP In a dream, a vision of the night When sound sleep falls on men, Then He opens the ears of men, And seals their instruction. (Job 33: 15 -16).

Dear God, We give thanks for the darkness of the night where lies the world of dreams. Guide us closer to our dreams so that we may be nourished by them. Give us good dreams and memory of them so that we may carry their poetry and mystery into our daily lives Grant us deep and restful sleep that we may wake refreshed with strength enough to renew a world grown tired.

We give thanks for the inspiration of stars, the dignity of the moon and the lullabies of crickets and frogs. Let us restore the night and reclaim it as a sanctuary of peace, where silence shall be music to our hearts and darkness shall throw light upon our souls. Good night. Sweet dreams. Amen Michael Leuing A Common Prayer

BAD DAY/GOOD DAY EXERCISE Bad Day, Good Day exercise. Give your client a piece of paper and a pen, and ask them to divide it into two columns. At the top of the left hand column, write ‘When I have a bad day i…’’ and the top of the right hand column, write “When I have a good day, I…”

BAD DAY, GOOD DAY EXERCISE Ask them to list as many of the things they experience under each of the headings. You can use these lists to help them think about the ways they manage their bereavement.

BAD DAY, GOOD DAY EXERCISE You can ask questions like: “What sort of pattern is there to these ‘days’? ” “How long in between the ‘days’ do you find there is? ” “What sort of things can send you into a ‘bad day’? ” “How do you get out of a ‘bad day’? ” Taken from Dodie Graves, Talking with Bereaved People

WHAT TO DO 1. List the essentials and the non-essentials 2. List what I know how to do and what I don’t 3. Help them handle the advice of others 4. Help them handle the holidays 5. Explanation letter – Change monthly or quarterly

EXPLANATION LETTER Dear Friend (family, pastor, fellow workers…) Recently I have suffered a devastating loss. I am grieving and it will take months and even years to recover from this loss I wanted to let you know that I will cry from time to time. I don’t apologize for my tears since they are not a sign of weakness or a lack of faith. They are God’s gift to me to express the extent of my loss, and they are also a sign that I am recovering.

EXPLANATION LETTER At times you may see me angry for no apparent reason. Sometimes I’m not sure why. All I know is that my emotions are intense because of my grief. If I don’t always make sense to you, please be forgiving and patient with me. And if I repeat myself again and again, please accept this as normal.

EXPLANATION LETTER More than anything else I need your understanding and your presence. You don’t always have to know what to say or even say anything if you don’t know how to respond. Your presence and a touch or hug lets me know you care. Please don’t wait for me to call you since sometimes I am too tired or tearful to do so.

EXPLANATION LETTER If you have experienced a similar type of loss, please feel free to share it with me. It will help rather than cause me to feel worse. And don’t stop sharing if I begin to cry. It’s all right, and any tears you express as we talk are all right too. This loss is so painful, and right now it feels like the worst thing that could ever happen to me.

EXPLANATION LETTER But I will survive and eventually recover. I cling to that knowledge, even though there have been times when I didn’t feel it. I know that I will not always feel as I do now. Laughter and joy will emerge once again someday. Thank you for caring about me. Thank you for listening and praying. Your concern comforts me and is a gift which I will always be thankful.

WHAT TO DO 6. Identify safe people 7. Set up a team of people – Different each month 8. Handle the feelings 9. Help them learn to live “without” 10. Develop a new relationship What will you continue do to and what will change? 11. Secondary losses

WHAT TO DO 12. Journals 13. A “Letting Go” prayer