Q and A:  Understanding Feelings

Question 4:  I'm a relatively new parent to this new world of "special children". I have a 6 1/2 year old boy, 4 year old daughter, and 16 month old boy/girl twins. My baby girl was born with Down syndrome. The shock has faded as we did not know of her diagnosis until birth, but I'm finding I'm having tremendous guilt. Guilty feelings because I was the one who wanted the third child (which turned into three and four) and because of wanting that third child we also got a fourth with a lifelong disability. My husband says he doesn't "blame" me at all, but I don't know, I feel like I gave my other children a lifelong burden. Some times I'm handling things fine, other days I am longing for the days before the twins were born. I have no help so taking care of twins plus two older children can be hairy, guess that’s why I feel that way? I love my baby girl tremendously, but cannot deal with having these nagging thoughts of wishing she didn't have Down syndrome. I need to accept her more, if I don't, how will I expect others too!

Response:  First and foremost, rest assured that you are not alone. For several years now I have led a parent-to-parent group at the Center for Autistic Children in Philadelphia. Last spring one of the mothers said very passionately, “I wish the autism was a thing. So I could drag it out of my son, put it here in the middle of the room, and beat the heck out of it.” Of the fifteen or so parents in the room, there was no one whose eyes didn't fill up with tears. We love our children as much as life itself, yet we didn't volunteer for them to have the problems they do. And these nagging thoughts do provoke guilt.

It is not unusual for parents to blame themselves for something they did or did not do prior that caused their child's impairment. This can be particularly painful for mothers who are led to wonder what they might have done wrong during pregnancy. Fathers may doubt that they took good enough care of their spouses. No matter what their religious background, somewhere in the back of many parents’ head comes the questions, is this a fair punishment for something I have done--or even thought?
It is commonly believed that good things happen to good people. It follows logically that bad things happen to bad people. Why do some people have impaired children and others normal children? This is a gut-wrenching question when a child has been diagnosed with a disability. A parent feels terrible if she believes she has caused this tragedy. I recall how blaming myself and wondered if the conflicts between myself and my ex-wife had caused or contributed to Tariq's condition.

When Bad Things Happen to Good People by Harold Kushner is the book I recommend most frequently to help grieving parents to deal with feelings of guilt. I reread it myself every few years. It is a common belief that God is just. When people try to deal with guilt, they often come to the conclusion that they deserve what they got and somehow their misfortunes come as punishment for sins. As a rabbi and as the parent of a chronically ill child who died, Kushner speaks to the unfair and uncontrollable distribution of suffering.

Whatever the reason, the world is not as orderly and understandable as we might like. Guilt helps precipitate a long, drawn-out thought process that we can use to determine the meaning of other feelings, thoughts, beliefs, and actions. As difficult as this process may be, it always make people laugh when I remind them that people without a natural sense of guilt often find themselves in prison.

The resolution of guilt is an individual matter. Quite naturally, but painfully, parents wish that they could have done something to avoid the tragedy. You too will move on and just remember the guilt instead of actively feeling it so much. I think you would benefit greatly from a support group of parents of children with Down syndrome where people share a special bond and have harbored the same guilty thoughts. Sharing them out loud will set you free.

RN

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Last modified: 05/06/07