PARENTING : HOW TO COPE WITH A SICK CHILD
by Robin L Goldstein, EdD Licensed Psychologist
Every parent anticipating the birth of a child has great hopes for the health, happiness and well being of that child. Most women who have gone through a pregnancy will admit to having had nightmares that something is wrong with the baby they are carrying. For some parents those nightmares come true and their children are born with or develop serious illness or disability. Great strides have been made in many areas of medicine and the disabled have a greatly expanded range of opportunities compared to those maturing a generation ago. Public acceptance of those with visible handicaps or disabilities has also improved, but for parents, many of the emotional challenges remain the same. Good parents often need to put the needs of their children first, but in this article I would like to address the impact on parents and what parents can do to take care of themselves when they are dealing with the difficulties of their child.
All chronic illness and disability represents a loss. For parents dealing with a major diagnosis in their child there is the loss of hopes and dreams. We all know of people with disabilities who have great achievements and highly accomplished and successful lives and their stories inspire us. We also know that not every child will grow up to be Stevie Wonder or Stephen Hawking or Helen Keller. A loving parent will do all they can to help their child make their way in life in spite of the unforeseen difficulties, but first there is grief. Often the grief can be paralyzing, especially in the beginning when knowledge is limited and the future feels uncertain and frightening. When problems develop as medical emergencies, parents can be called upon to make significant decisions when they feel at their most helpless and uncertain. This fear and paralysis is normal. Some health conditions (cancer for example) can cause recurring crises so that parents who feel they have already grieved may feel surprised when are they are thrust into it again.
A parent’s grief can have a different impact depending on the age of the child. When an infant is born with health problems there is often enormous shock and disbelief. “Why me?” is a normal and common reaction. Birth defects or medical problems are rare but they do still occur. Parents will grieve over the loss of the events they expected with an unremarkable birth. Often the family cannot take the baby home from the hospital as planned, so the happy scenarios that were anticipated before the birth are part of what the parents grieve. Mothers will worry that the baby will not feel bonded and connected to them if they are not available around the clock although there is really no indication that babies who do not come home immediately suffer in their long- term relationships.
With children in the age range of two to about six, parents experience the added stress of the child’s anxiety, confusion and inability to understand what is happening. This can heighten the sense of grief for a parent, especially if their child is in pain or danger, and the child does not have the intellectual development to understand the purpose of difficult medical procedures that might occur. No parent wants to see their child in pain and children with medical problems may require surgeries, injections and other treatments that cause pain, and which the parent cannot avoid.
Children from approximately 6 to 12 will have more understanding of what is happening. At this stage the parents’ grief may focus on the normal childhood experiences that their child missing. Parents will be anxious about absences from school for medical procedures or illness. The time demands of the child’s problems may have an impact on the parents’ work and career so there may be grief for missed opportunities. As children mature they may be better able to cope with their handicaps. If a child was born with a problem or developed it young they may have a greater comfort and acceptance of limitations than the parent who hoped for something different. This can lead to a further burden of guilt for the parent who is still grieving a loss that their child has come to accept.
Adolescence and young adulthood bring new challenges and, potentially, a different form of grief. For children who have been dealing with a chronic disability or illness for many years adolescence brings a time when they chafe at parental control or medical protocols and may become less cooperative or compliant with medical treatment or limitations. Adolescence is a time of risk taking and children with disabilities may take risks that could have a much higher possibility of complications. As their children become more independent, parents may see their careful plans and systems to care for or protect their child become disrupted. If problems occur, the parents grief is re-ignited.
Children who have been healthy up to adolescence face a higher risk of accidents or substance abuse in the late teens or early twenties. Parents who go through this with a child suffer greatly. Frustration and anger may be on the surface as a parent sees a child behave in self-destructive ways but underneath that is our old friend grief, that terrible sense of loss that the child may not have the happy successful life we envisioned for them.
Grief is manifested in many ways and can appear in many stages. For a parent to cope, it is important to be aware of and acknowledge that sense of grief. People may avoid expressing or experiencing that grief out of the fear that it will be overwhelming. In fact it is more destructive when it is hidden and remains unacknowledged. Confide in loved ones, share with other family members, keep a journal. Suppressing those feelings only causes greater anxiety to emerge. One cannot burden the child with one’s own fears, but dealing with your own grief can teach you how to help you child to cope with theirs when they experience it.
Disability and/or chronic illness in a child is one of the most difficult challenges one can face. The rate of divorce in marriages where a child has a major medical problem are very high. This is a double tragedy, as these parents as well as the child have an exceptionally great need for a safe, supportive family. Some of the most advanced hospitals offer parents family group support to help them cope. A child with serious medical needs places an additional emotional and often economic burden on a family. Strong marriages pull together and can strengthen with adversity but weaker ones crumble. Men, who are often raised to be strong, silent types may avoid talking to their wives about what the child is going through. “Don’t dwell on it” may be their response and coping strategy, one that is often counter-productive. It is true that too much focus on difficult situations can become obsessional and destructive in it’s own right but it is important to find the right balance. Excessive avoidance is never an effective approach.
Equally problematic is relying on the child as a source of comfort. Parents have the responsibility to care for their children, they cannot confide their grief and anxiety to those children. Even mature children who seem to understand the situation well should not have the added burden of worrying about the impact of their illness on their family. There is nothing wrong with admitting, “I’m worried too” when talking with an older child but that should always be paired with an encouraging statement about better possible outcomes.
The Internet can be an enormous resource. Even rare medical conditions now have organizations dedicated to disseminating information and providing support. While there may not be enough parents in your community with children who have, for example, leukemia, there is a large community online. Many websites have message boards which work very conveniently and effectively as a place where parents can share their personal stories and difficulties, share coping strategies and discuss the latest medical choices. Many organizations have workshops or conventions which parents can attend. The Internet also affords parents the opportunities to learn about their child’s condition. The latest in medical research is now available to any parent who finds that knowledge helps them to cope. Some will prefer to get information only from their own doctors. It is important to stay tuned in to how much information you want and to follow your own needs and preferences, not listen to what others think you ought to do.
TAKING CARE OF YOUR OWN NEEDS
When your child is disabled, injured or suffering it can be hard to feel that your own needs are important As a parent, your child needs you and you cannot take care of someone else when you are falling apart inside. Studies of grief show that the death of a child is by far the hardest loss for people. A much higher proportion of parents who have lost a child suffer from depression, anxiety, poor marital outcome or poor vocational outcome than in any other loss including the loss of a parent, a spouse or a sibling. Extrapolating from that, it is easy to see that a serious chronic illness or disability in a child can take a tremendous toll on parents. Parents can be too busy worrying about and caring for their child to notice that their life is suffering.
One of the most important things you can do to care for your child is to take care of yourself. Putting on a good face will not fool an alert and intelligent child. Your distress and anxiety adds to your child’s burden. Parents who feel guilty caring for their own needs should remember the important lesson this teaches your child and the positive impact on the child.
When family support and distractions are not enough, do not hesitate to get professional help. Counseling, support groups, medications for anxiety, insomnia and/or depression can all be invaluable when the stresses become overwhelming. Take care of yourself, and both you and your child will benefit.
If you are the parent of a sick child, I can help you, contact me.