My heart is full of things I want to say to you, my friends, but I have had a difficult time talking to you about them. I have decided to take this indirect (read that “cowardly”) way of talking to you.
We were so close before my child was born with his disabilities. He is older now and my life has changed so much. I didn’t expect the entire focus of your life to change – as mine has – because of the birth of my child. I didn’t expect you to become an advocate for people who have disabilities, but I also didn’t expect the distance that has grown between us.
Friendship is based on shared experience and the telling and sharing of stories. We had so much of that once. Then I had an experience that you didn’t want and didn’t want to share. The “fault”, if there is any, isn’t all on your side. I didn’t know how to tell you what I needed. I guess I expected that somehow you would know. I’ve been thinking back over the years about some of the things I have learned. I’ve thought of some things that I wish I could have said to you years ago.
I wish you had been more available and more willing to listen to my pain, but you didn’t seem to know how and you didn’t seem to want to learn. I have needed your ears and your arms, your shoulder to cry on, your strength when I had none. Many times you were there but tired of hearing about my pain long before it was gone. I heard someone say that people who are grieving need to tell their stories 150,000 times. I know it was hard to listen to me. I’m sorry I was so needy – but I was.
I wish you had continued to just “be there.” You slowly dropped out of the center of my life. Parents of children who have disabilities often become socially isolated. Now I know that it happens to most parents in my situation but you could have helped it to not happen so much to me.
I wish you had been able to share your pain with me. Awhile ago one of you and I had a chance to talk and you said: “There has been so much pain in my life that you don’t know about.” I wanted to shake you. I wanted to yell: “How could I know? You haven’t told me!” I could sense that whenever you were in pain, you have thought something like: “I won’t burden my friend with this. It is relatively minor compared to her immense, chronic pain.” Maybe I was so consumed by my own pain that I couldn’t have really heard yours, but I don’t think so. I will never know. I wish you had given me a chance.
I wish you were willing to come into my new world and meet my new friends and share your new friends with me. I have many interesting new friends: other parents whose children have disabilities, adults who are themselves disabled, service providers who care about families like mind, legislators and other public officials who are working for change in policies that affect us. I am sure you have interesting new friends, too. Once I mentioned that we could have an “Old Friends, New Friends Party.” You thought it was a good idea. Maybe we could do that yet. I would like to.
I wish you had been willing to stand beside me and not put me on a pedestal. Quite often one of you will tell me how much you admire the way I have responded to my child’s disabilities. You assert you could never have done so well yourself. For years I would get angry when people would say this, but I couldn’t figure out why. I decided I would continue to meditate on it until I had some insight. I discovered several things about my anger.
* I get angry because people seem to be saying that my child’s disability has made me a better parent. I think I would have been a great parent anyway. I didn’t need my child’s disability to make me a great parent and, if I did and had a choice, I would choose to be a mediocre parent of a child who is not disabled. (…or would I? My son has blessed my life in many ways just the way he is. Anyway, it’s a choice I am powerless to make.)
* I think people have depths of resources that they seldom get to use. I think that for the most part people do what they have to do in the circumstances of their particular lives. I don’t think I have done anything very exceptional. I have a child. I love him. I try to do what will make his and my life better and richer. (I let God help and support me and that has made a fathomless difference.)
* The insight that has helped me the most with this anger, however, is an image of a pedestal. When friends comment about my responses to my son, they are complimenting me and putting me up on a pedestal. What should this compliment make me angry? Because they are emphasizing the distance between us. They are saying: “You are over there in the more dangerous, more vulnerable place. I am over here – way over here – with my family in a much safer place. Not only is there this great distance, but you are also way up there on that pedestal. That makes the distance between us even greater and makes me feel safer.”
I want my family to be considered a part of the regular, the typical community. Let us stand beside you – just another family, with God’s help and yours, doing what we have to do and doing it in community.
I wish you could have found more ways to offer your help. One of you, my friends, saw my other child had needs I could not always meet. You called to tell me about T-ball and how and where to register. You knew I was so swamped that I was likely to miss this opportunity. You were right. We have joked that you fill the role in my life of keeping me informed about what regular families do. Thank you. I need that.
I wish you had resisted the temptation to dump your pat answers on me. Shortly after my son was born and we had his diagnosis, I called one of you in deep emotional pain. It was the first you knew that anything was unusual about the development of my baby. I poured out my pain. You listened well and then you talked. Your words hurt me so badly. It was years before I found the words to describe what happened.
I visualize a continuum. At one end is mercy and at the other end is exhortation. We all need huge doses from both ends of this continuum throughout our lives. These doses are often administered from bottles in the hands of our friends. Sometimes only a friend can give this medicine. That night I called because I needed mercy and acceptance, tons and tons of it. What you poured out upon me instead was exhortation.
This letter is a compilation based on my experiences with several friends. No one friend of mine is addressed in this letter. Every friend whose actions I single out for criticism has also done wonderful, positive things for me. If you recognize yourself, my friend, please forgive me if I have hurt you.
Reader, if you have a friend whose child is disabled, I hope some of my experience and suggestions my help you be a better friend to your friend.
Your friend whose child is disabled needs your friendship. There is a void in his or her life that only your friendship can fill.