Chronic Sorrow in parenting a child with a disability

‘Chronic sorrow’ is the term used to describe the chronic hidden sorrow that parents of a child with a disability live with on a day-to-day basis. Simon Olshansky, a counselor to parents of handicapped children, coined the term in 1962.[1] Parents often do not recognize this sorrow, nor do their friends, relatives, or the professionals supporting them. Chronic sorrow does not mean that parents do not love or feel pride in their child. These feelings of love co-exist with the sorrow. Perhaps the sorrow is present because there is so much love. Chronic sorrow is a different kind of sorrow than grieving the death of a person. When someone dies, the grief may be intense, but once mourned sufficiently, the sorrow ends. Chronic sorrow is ongoing, cyclical. It changes over time but does not end. The grief may materialize at odd unexpected times, especially when the parent thinks they have mourned and accepted everything. There is not just the one loss of a healthy child; there can be many losses to grieve as the child grows. When I read Olshansky’s article many years ago, it struck a chord with me. It reassured me that I was normal, and it gave me permission to cry and be sad at times. Sometimes taking the time to grieve and be sad is a hard thing to do in our take-charge society. There is a resistance to suffering, especially if we cannot fix it right away. Often people turn to distractions and pills rather than face and walk through the pain. We like clean happy stories. I did not write this blog to be a ‘Debbie Downer’ though. I wrote it to point to reality. Some studies have suggested that 80% of parents of children with disabilities suffer from chronic sorrow. Though chronic sorrow can be part of the journey as a parent, there are ways of coping with it. Most important is to be aware that there are certain predictable situations that can trigger feelings of sadness. There also can be a cyclical nature to the chronic sorrow. It can get better and worse over time and with changing life circumstances. When Mike was a baby, I cried with every illness, every hospitalization, every new diagnosis, and every developmental milestone that he failed to achieve. In his preschool years, when his health improved and he had fun playing with his brothers around the house, I forgot all about the sorrow. The sorrow and grief returned when he started school. Then I grieved with every homework assignment he could not accomplish, every low grade on his report card, and every IEP meeting. Sometimes the sorrow is not so much a loss of something present, but also the loss of a bright future for the child. Because it is chronic and occurs at different times, at times parents are not always grieving synchronously. What might really bring sadness to one parent is not that earth shattering to the other parent. Because I was the only one to attend the IEP meetings, they were much more traumatic for me than for my husband. Other times the sorrow is watching your child suffer, knowing your powerlessness in making things better. Sometimes the child’s suffering is physical pain, other times it is emotional. As Mike grew older, there were different losses, like watching him become the outsider among his peer group. Once, I found myself weeping at a junior-high choral concert. I was not crying because of the cacophony of changing adolescent voices. It was seeing all the friends that he had played with when he was younger. They were together laughing and goofing off on the stage, but my son was alone, by himself, on the periphery. In high school, I watched him struggle to keep up with his peers, wanting to do everything they were doing. It broke my heart to watch him struggle to be normal, to keep up, and end up falling on his face. I do not think anyone has researched or written an article about the sorrow the child experiences as they grow and become aware of their disabilities, but I suspect my son also suffers from chronic sorrow over his losses. (I grieve over his sorrows also). Besides being aware of possible triggers for chronic sorrow, other ways for parents to cope include support groups or counseling. It can be helpful to talk with another parent who knows exactly what you are going though. It can also be helpful to support other parents when they grieve. As always, parents need to take care of themselves through good nutrition, regular exercise, and a good night’s sleep. Paradoxically, chronic sorrow has some benefits. Living with chronic sorrow has the ability to soften and open your heart. Some of the most compassionate people I have encountered in my life are people who have suffered. I know for myself that the sorrows and losses I have experienced raising my son have opened my heart up to the world that we all share, and the sufferings and losses we all experience in one way or another as humans in this world. Chronic sorrow has taught me compassion for myself, for my son, and for all those I encounter in day-to-day life.