6
“At what point do I get to cry over it? The answer has been ‘Never.’ ”
—ELIZA
AS A SOCIETY WE HAVE DIFFICULTY DISCUSSING disability in terms of grief; we are trying to promote disability as a “difference” rather than anything that should bring about grieving. The reality for many families, however, is that a child’s disability is a huge disappointment, and until the sense of loss can be acknowledged and expressed, it is difficult to move on.
All members of a family in which there is disability experience loss: the person with the disability, parents, other children and extended family. Grief is often unrecognized, but in fact it is a chronic sorrow that continues throughout a lifetime. Many families are able to pick up the pieces and find new meaning in changed directions. They can still love and laugh, but there may be lasting heartache that keeps surfacing, often at times when it’s least expected.
In order to understand the grief of siblings—which is less often recognized than that of other family members—it can be helpful to look first at the losses for parents.
PARENTS
For parents of a child with a disability, the losses can be far-reaching. At the same time, in the initial stages of diagnosing a child’s disability, it is often unclear what the losses are for the child and what the future holds for him and his family. Parents suffer from the loss of dreams for their child’s future, the loss of the “normal” child they thought they would have, the loss of the family’s future as they envisaged it. There can be loss of a sense of security or control over destiny and, in some cases, the loss of religious faith. Many, particularly women, lose their career, income, and social networks. In some cases, bonding with the child may be affected. In other situations, parents become so absorbed with the child (through love, protectiveness, and sometimes guilt) that they shut themselves off from others around them, including their spouse and other children.
Parents’ self-esteem can be severely shaken, which in turn affects their attitudes and coping strategies. They can be racked with guilt and have constant questions about what they could or should have done to prevent their child from suffering. One mother was afraid that the chemicals she had used cleaning the bathroom might have been the cause of her child’s problems. Doctors told another mother that the probable cause of her child’s disability was the influenza immunization she had during pregnancy, even though she had been advised to have it by another doctor. She lived with that guilt for many years until genetic tests proved that the immunization was not the cause.
Julie’s mother carried guilt in another way.
My mother always felt responsible for my sister’s illness; she felt she must have led a very bad life for this to happen to her.
Some mothers may lose faith in their femininity, as defined by their ability to produce a healthy, active child. Fathers may have similar doubts about their masculinity and their ability to act as protector of their family.
Caroline tells of her anticipation leading up to her son’s birth. He was born with heart problems and other disabilities. Instead of being surrounded by flowers and congratulatory cards, she was pretty much left alone. People didn’t know how to respond and so they stayed away. She felt keenly the loss of all the large and small celebrations of her son’s birth she had anticipated during her pregnancy but received none of the sympathy and support she would have been given if her baby had died. She needed comfort and reassurance but was told by her mother, “Well, at least he isn’t in a wheelchair,” as though that should be some consolation.
Often people don’t know what to say, and what comes out can be quite inappropriate. Joy finds it difficult when people say things like “But she looks so normal!” when referring to her daughter Sally, who has epilepsy and intellectual disabilities.
My sister-in-law commented once that it is sad about Sally, because she is so pretty. I think it is sad, even if she were ugly!
Various accepted psychological models that focus on the stages of grieving don’t seem to fit the situation of families of people with disabilities. For example, it can be difficult to accept the reality of the loss. For parents of a child born with a disability, there are no rituals to help them come to terms with their loss and grief. They don’t get to talk about it; some may be made to feel guilty if they even try to express their feelings. So their grief remains largely private and repressed. Holly Lu, the mother of a teenage son with multiple disabilities, talks about the difficulties of the grieving process.
When I think about the coping process, it seems to me that the Elisabeth Kübler-Ross [a psychiatrist who published On Death and Dying in the United States in 1969] model of the stages of grieving doesn’t fit our experience of having a loved one with a disability. We don’t move tidily through these well-defined stages, ending up in the magic place called acceptance. Instead, we cycle through all those feelings—including several others, such as envy (of folks who don’t seem to appreciate the gift of life without disability), frustration (with nonresponsive, if not actively weapon-bearing service systems)—more like a Ferris wheel than a straightforward climb up a ladder.
Parents of a child born with a disability may feel guilty about grieving too much or for too long. In some ways, it might seem like a negation of the child as he or she is. We are pressured by society and our best selves to love our children unconditionally. If parents grieve too much, they are saying, in effect, “I don’t love you one hundred per cent the way you are. I wish you were different.”
Grief is a process. If you don’t work through the grief—understand, acknowledge, and truly experience it—then it is hard to resolve the pain and loss. In the same way that people may experience a range of reactions to a death, parents of a child with a disability may go through shock and withdrawal, sadness, denial, despair, fear, anger, and guilt. If these are not allowed an outlet, they might suffer subsequent physical or emotional problems.
One of the normal phases of grief, which Kübler-Ross discusses, is a feeling of anger, either at the person who died or at the world or both. Again, some parents with a child with special needs can’t allow themselves to feel anger at the child—that would be too unfair to contemplate when the child is so vulnerable. It’s easy for the anger to be turned inward and build on existing guilt or anxiety. If anger is left unexpressed, it is difficult to resolve the grief and, in some cases, can result in parental depression, substance abuse, or even abuses of the child with special needs or their other children in the family. For some, the “system” becomes the focus of their anger. Although in many cases this might be quite understandable and reasonable, for some parents the aggression toward the system can become unhealthy for them and their child.
For parents of a child with a disability, grief resurfaces throughout their lifetime as they are reminded of their own and their child’s loss, especially when their other children or friends’ children reach different milestones. Many may feel that they have come to terms with the situation but then will be reminded again of what could have been. It can be difficult finding resolution given the unending tasks they face and the unfixable nature of their child’s disability. Caroline reflects on the pain.
I don’t feel we can ever complete the grief process. The pain and loss will always be there; it is a day-by-day rollercoaster ride of emotions. When do we start to grieve and when do we end?
Joy’s daughter Sally started at a “normal” kindergarten but then transferred to a special school for children with disabilities. Many of the children from Sally’s kindergarten had gone on to the school that Joy’s older daughter, Rose, attended.
We went to Rose’s end-of-year concert at school. I was sitting there, watching the children perform, with my husband and new baby. I recognized some of the children from Sally’s kindergarten class and suddenly realized that if things had been different for Sally, I would have been watching her sing with the class onstage. This was the class that Sally should have been in. The feelings of overwhelming grief swept over me, once again.
Having a third child, Catrina, has triggered new emotions in Joy. She revisits the feelings she had when waiting for Sally’s diagnosis and feels enormous sadness when she remembers the difficulties of the early years and how hardly any mothers spoke to her at Sally’s kindergarten. She feels sad that Sally has no little friends and can’t do ballet and other activities like her sister. She realizes they will have to teach Catrina about Sally’s disabilities and that Catrina’s development will overtake Sally’s in a few years.
My parents had difficulty acknowledging and coming to terms with their own grief. Mum and Dad had come from a generation that didn’t talk readily about feelings; you just got on and did what you had to do. My mother told me that for weeks after hearing of my sister’s diagnosis, she walked the streets of the town where they lived, pushing her baby’s pram and crying. She would go home and clean herself up each night, ready for when my father returned from work. One day she just said to herself, “This has to stop, I need to handle this and get on with life.” She no longer walked and cried.
My father went off to work each day. He had no outlet for his own pain. If his child had died, he would have been given compassionate leave, time off for grieving. But in this situation, he too had to just get on with the job. I don’t believe he ever cried. He submerged himself in his work and now wonders about the effect of that on my mother. There was certainly no counseling or other support to help them deal with their emotions.
Within a marriage there can be differences in how each partner deals with his or her grief. In general, women find it easier to express their feelings about loss. Men often feel they need to be strong, to be in control, not to show emotion and to be there for others. They are expected not to cry or show vulnerability. Often men need more time before they are ready to discuss the implications of the disability.
Joy tells of the frustration in trying to get her husband to talk.
Sally had had a long seizure during a family vacation. As a result she was taken by helicopter back to the city hospital. We had to pack up the vacation house and drive back to the hospital, not knowing what we were going back to. Sally ended up being okay, but when we returned home, all I wanted to do was sit down and talk about what had happened, be hugged, and have a good cry.
I wanted to know that we would be okay and that we could face together whatever life was presenting us with. All James wanted to do was be by himself, to think. So he went outside and mowed the lawn. I can remember sitting on a seat on our porch crying and feeling more alone than I had ever felt before. I kept thinking, “My baby has something terribly wrong with her and how will we cope with all this if James can’t even give me a hug and talk about it?”
On reflection, I can now see that we were both feeling overwhelmed by the situation and were each dealing with it in our own way. Later, we did talk about things and our relationship has been strengthened by it all. I had to accept, though, that we were going to have to go on our own journeys to survive it together in the end.
Josie tells a similar story about her father.
My mom now jokes about it, but my brother was born at the beginning of summer. Every morning my dad exercised—ran, biked, and lifted weights. Every night after my brother and I were in bed, he would go outside and sit and stare at the sky. My mother said that she wanted to talk about how their new baby was going to affect their lives, and my dad just wanted to be alone. She experienced a loneliness like no other. She says that it really upset her that he didn’t want to talk about it, but she says that something just kept telling her to leave him alone out there at night, staring.
After some time, my dad was ready to talk about what had happened during the previous months. My mom now says she is sure that if she had pressured him early on, they never would have made it through. She realizes it was his way of coming to terms with the life he had expected versus the life he was given. It was my dad’s way of accepting what was going to happen during the next fifty-plus years of his life and accepting the loss of the son he thought he was going to have.
He has always been a wonderful father to both my brother and me—very involved and very loving—but I definitely think moms and dads handle the birth of a child with disabilities very differently, and there might be a lot fewer marriages in trouble if someone were there to help the parents work through their feelings.
These parents could have been helped enormously if early support had provided an understanding of each other’s different needs. Joy observes that she has seen several marriages break down because of the stress in the early years of dealing with a child with a disability.
On the other hand, while the stress and grief can contribute to trouble in a marriage, a couple’s relationship may be strengthened by all that they have gone through together. This obviously depends on how healthy the relationship was before the child’s disability. Supporting each other through pain, disappointment, and celebrations can create an unbreakable bond that sustains partners through a lifetime. Each parent needs reassurance of the other’s commitment. Again, early support from outside the marriage can be of enormous benefit in the long term.
SIBLINGS
It can be even more difficult for siblings to understand and express their losses than it is for their parents. Children with a brother or sister with a disability have to grow up quickly and be responsible. In the process, they lose some of their childhood.
Siblings who are older than the child with a disability have a period of “normal” family life when they can share all the usual activities with parents and possibly other siblings. Along with the rest of the family, they anticipate the approaching birth of a baby with excitement and imagined scenarios. But that can all come unstuck when a child is born with a disability. Siblings know there is something wrong, but well-meaning parents may shield them from the full picture as long as possible. Some parents, absorbed in their own distress, find it difficult to recognize or acknowledge the effects on siblings.
If siblings do start to understand the magnitude of the loss suffered by their brother or sister with a disability and by the whole family, how can they possibly grieve for themselves? It feels too self-indulgent. What is their loss compared with that of their brother or sister, or that of their parents?
Nance says:
I don’t know if I’ve ever really acknowledged my grief. I’m always so defensive if people feel sorry for me or pity me because of what we’ve been through. I always say how great Ashley is and how proud of his achievements I am and how I wouldn’t be the same person without him. But at the same time, I just well up with tears when I think about him. It’s like a double-edged sword. I feel his frustration, that he can’t take control of his life as I can. I never bring up with Mom how he got sick when he was little; it still upsets her too much.
Siblings who are younger than the child with a disability have even fewer opportunities to grieve. They are born into the role of sibling to a person with disabilities, and many don’t really come to an understanding of their losses until adulthood. They may wonder what their brother or sister would be like if he or she didn’t have disabilities, what their relationship would be like. When you are the only sibling, it is easy to wonder what it would be like to have a brother or sister with whom you could do the “normal” things that other siblings do, and you have no one else in the family who can relate to your feelings. As Josie explains:
As the only other sibling, we have had no one to share our heartaches with. Our parents had each other and they understood each other’s feelings . . . but there has been no one in my life who has also had my brother as their brother . . . and so at times I have felt sadness and not understood, and I’ve noticed that those feelings get stronger as I get older.
There are times when I would give anything in the world to know what it feels like to call my brother on the phone and talk.
In my case, having my own family helped me to really understand my own loss. I saw my children sharing the full range of emotions—screaming with anger one minute, sitting with arms entwined the next. I began to feel the loss of a playmate, a confidante, a “partner in crime,” someone to share the birth of my children, someone to share the birth of hers, someone to share a past with, and someone to look forward to the future with. I still long for a “normal” sister, more so as I get older.
Other siblings, also, have not recognized the need to grieve until later in life. Renee reflects on the difficulties.
I never spoke about it until I was an adult and then only to a very few trusted friends because I knew I would howl. I had never grieved. I had never done any of the things I needed to emotionally.
Eliza talks of a range of issues.
I have often felt like grieving over my brother as though he had died because it feels like a death of all potential and possibility for who he could have been, individually and as a member of our family. But when do you start and when does it end? At what point do I get to cry over it? The answer has been “Never.” As a sibling, from the time you understand the problem, you are ushered into playing your supportive role in the family. No one has time or any extra energy to deal with the other sibling’s grief. And I certainly did not want to burden my parents with any more needs.
Caroline talks of her own father’s grief. He had grown up with a sister with disabilities, and then his grandson was born with disabilities.
It was only after becoming a grandfather of a disabled child that he talked about growing up with a disabled sister. For the first time in his life he truly grieved for the losses of childhood.
Siblings go through different stages of grief over the losses associated with the disability. As they proceed through different educational levels, in some cases they might realize that their brother or sister will never be able to have the same experiences. Some grieve when they marry and wonder how it would have been if their sister could have been the bridesmaid. Each celebration, every rite of passage, can be a source of grief, knowing the other child will never experience the same fulfilment. Some hear others talk of their “normal” sibs and the activities they enjoy together and the squabbles they have, and think, “If only those people knew how lucky they are.” I remember being particularly jealous in my teens of one friend who had a brother and a sister. To me, it seemed like the ideal family, and I fantasized about marrying the brother and becoming part of it.
Joy remembers her daughter Rose’s sadness when she realized her sister Sally would not be going to the same school.
Rose had a number of children in her class with younger siblings starting school. We had hoped Sally was going to be able to go to the same school, but it became obvious she needed a special school. Rose became very sad and teary when she saw her friends and their siblings playing together at school. In the end we arranged for Rose to go to Sally’s school for a couple of visits, and her feelings began to resolve, for now.
Losses can include memories of childhood. Many siblings don’t have family vacations to remember. Meagan talks about her brother ruining her homework or damaging other possessions.
We had to get rid of trinkets and other things—he would destroy them all. I wish I had something left over from my childhood.
Many siblings need counseling as adults to work through the grief and guilt. Most recognize the tremendous loss for their parents, but they also express the wish that parents and others would recognize their own losses. Eliza talks of the difficulty in focusing on her own future.
I think that siblings really grieve alone, or maybe never really get to grieve in a healthy way, which includes knowing when it’s okay to stop grieving and focus on our future.
Nance sums up the experience of many:
Talking about my brother and my relationship with him brings tears to my eyes, as it has so many other times in the past. And it is not because I feel particularly deprived, that in childhood I missed out on anything significant because of him. I’m the first to admit that there were difficult times, times of great sadness as well as the small victories that were celebrated out of proportion. It just seems there are many feelings that I have never acknowledged, and unfortunately, despite the great joy and pride I feel in his achievements now, speaking about him in an intimate, sharing way almost always brings out the tears.
When a brother or sister with special needs dies, a sibling’s feelings can be intensely complicated. They might feel a huge sense of loss over the life their sister or brother might have lived. Or they might feel relief, mixed with guilt for having that feeling. They may also experience guilt about not having done enough to contribute to the child’s care.
RELIGION
Parents and siblings of someone with a disability may suffer yet another loss, a loss of faith. Religious faith can give strength in all sorts of adversity, but disability can sometimes provoke a turning away from long-held beliefs. Seeing your child suffer a chronic, terminal illness, or watching your brother struggle to walk or talk, or observing how your sister is dependent on others for the most basic functions can lead to a questioning of faith. For those whose faith has been shattered, it can be a major task to re-create a new sense of spirituality.
Some people explain the disability as “God’s will.” They say that it is “for our own good” or that “we were especially chosen by God to care for this special child.” This belief, if freely chosen by parents and siblings, can be of considerable comfort. Families can gain sustenance from the belief that their purpose in life is to care for the child with a disability. However, when religious figures or other family members or outsiders impose the belief on families of people with disabilities, it often has the opposite effect and adds more grief and suffering to their lives.
Some see a family member’s disability as a punishment from God. One mother thought for years that her child with Down’s syndrome had been her punishment for another child she had borne and given up for adoption when she was sixteen. A Catholic priest told another mother she had sinned and was to blame for her child’s disability. It is hard for many people to accept the idea of a God who would give a child a disability as a response to its mother’s transgressions. Another mother saw her son’s disabilities as her absolution—caring for such a child would surely secure her a place in heaven.
Renee had her own crisis of faith in her late teens.
For me, a large thing happened when I was at university. At about age eighteen I experienced an incredible crisis of faith when I studied philosophy. I had been brought up in a strict Catholic family. I was studying philosophy and the problem of evil. You start to question how it is that there can be a good and all-powerful God when there is such wretchedness in the world. This was brought home to me very pointedly, I think, because as a child I had gone through life being taught to pray, “Thank you God for all the good that you’ve given me.” Well, what do you say to the God who has bestowed something awful on you? It was a real disturbance of my worldview. I feel I worked through all that, but at eighteen it was a crisis for me.
We generally like to believe that the world makes sense and that there is a cause for everything. Young children often use this line of thought to blame themselves for any stress that may be occurring around them. Self-blame denies a child the chance to grieve. It also leads to a loss of self-esteem. Adults often have difficulty accepting that a child needs to grieve.
Telling a sibling, “God chose you because he needed someone special to look after this little special child,” can create all sorts of dilemmas in the mind of a young child. Siblings find it difficult to let themselves feel anger or sadness or any of the reasonable and natural feelings that may arise in living with someone with a disability and may turn their anger on themselves instead.
I have spoken to many parents and siblings who found themselves unwelcome at church or openly ostracized because of a child’s disability. In spite of being regular churchgoers during their early courtship and marriage, my own parents found no comfort there after my sister was born. They felt quite excluded. At a later stage, when they were back in the city, the same occurred. My sister obviously had a problem, and no one tried to include her or my parents. My mother went back to church some time later but found the logistics of getting there difficult, as it meant leaving my father to deal with huge stresses at home. She talked to God in church one day, saying she could no longer leave her family at home in disarray on a Sunday morning. Certainly, the church did not reach out to my family.
For many people, however, church and a strong faith are important factors in their adjustment. A family can gain enormous social and emotional support through belonging to a church community.
Part of coping with a child with special needs involves creating more positive meanings out of the situation. With a strong faith it can sometimes be easier to create such meanings. But even without faith, many families are still able to find inner strength and positives in their situation. Some families say they have learned the meaning of unconditional love, that the disability made the family much closer, and that they have learned tolerance and compassion. This can take time, however, and depends very much on the support given by family, friends, and professionals.
SUMMARY
Parents
The grief of disability is largely unrecognized and unsupported.
It can be difficult talking to a partner about feelings.
Your whole worldview may be upset.
Siblings
It is even more difficult to recognize and acknowledge the losses for children.
Siblings can be helped to create more positive meanings out of their experiences.
KEY STRATEGIES TO DEAL WITH THESE ISSUES