Loving, Hoping, Waiting - Grandparents and Children with disabilities   By Homer Page

Recently a close friend called to talk. At first we discussed business, and then he told me what was troubling him. Three days before his son had called to tell him that his two year old grandchild had just been diagnosed with leukemia. My friend was devastated. He wanted to help, but there was little he could do. His son and his daughter-in-law were in control of the situation. He could only feel, and hope, and wait.

Several years ago I received a similar call from a friend who had just been told that her two grandchildren had both been diagnosed with muscular dystrophy. Her world was turned inside out. She wanted to do something, but the children's parents were the responsible persons, and they would resent her intruding into what was their pain and obligation. She could only love, and hope, and wait.

The grandparents of children with disabilities often find themselves in a difficult situation. They are aging and they have to give up the control of many things in their lives. Their grandchildren are a comfort. They are a promise for the future and they are full of potential. A grandchild offers an opportunity for an older person to watch and perhaps dream of all the possibilities of youth. Perhaps one can live vicariously through some of those wonderful experiences. But when the child has a disability, the dream is altered. The potential seems tragically limited. The grandparent understands the pain and frustration which likely lies ahead for the child. There is a feeling of being ambushed. The grandparent needs help, but he or she is not the primary person to whom the family gives its attention. The grandparent must find the strength to support others, while his or her heart is breaking. In time there may be many opportunities to help, but someone else will identify those times.

Unfortunately there are many situations which require grandparents to take a greater responsibility. It is not uncommon for grandparents to become the primary care givers for children with disabilities. Soon after my friend learned that her grandchildren had a form of muscular dystrophy, her son died and his wife was tragically killed in an automobile accident. She and her husband became major care givers for the children. Long after their children were grown, they found themselves once again caring for youngsters, and those children had significant disabilities.

Micki Kaye is a grandmother who lives in western North Carolina . Four years ago her daughter gave birth to a healthy baby boy. Xavier developed normally until he was about eight months old. However, at that time he stopped growing and his mussels weakened. Xavier failed to acquire speech at the normal time and did not develop normal cognitive skills. Micki's daughter, Amber and her husband have cared for Xavier and given him a great deal of love and support. They take him with them and expose him to a maximum of family activities. However, Amber is once again pregnant and Micki has been enlisted to care more for Xavier.

Micki says, “I moved to North Carolina from Orlando to be able to help. Amber and her husband needed to be given the space to care for their child, but now they can use my help, and I am glad to be able to be with him”. Micki says that she has learned patience. She helps, when she is asked, and she does what is needed. She says, “I am not Xavier's mother, I am his grandmother. I can be supportive, but it is not my place to take control. The parents have the control, and that is the way that things should be”.

In recent weeks Xavier has shown some progress. Micki is hopeful. She says, “You must stay positive. I can support my daughter by never giving up hope”. No one can tell Micki's family what the prognosis is for Xavier. They can only commit to giving him the very best life that he can live. If he makes more progress, they will give thanks, but if not, they will accept him as he is and love him for that. “The only way that we can live”, she says, “Is to accept Xavier as a gift and love him for who he is”.

Amber and her family have found support in their community. The Head start program and the public schools have served Xavier, and the local Developmental Disabilities program has facilitated coordinated services which have been of great assistance to the entire family. Still it is the family that has given the most care. Micki has loved, and hoped, and waited, and when she has been asked, she has given freely of her time and effort. She says, “I have learned so much about myself. I didn't know I could be so patient. I am a better and wiser person, because Xavier has been a part of my life”.

I cannot write this article without talking about my own granddaughter. Kelsie is twelve years old and at first glance seems to be perfectly healthy. She is a beautiful, bright, and athletic young person, but she has Cystic Fibrosis, (cf). CF is a genetic condition that causes a person to develop mucus that blocks body functions. One of its major symptoms involves the collection of mucus in the lungs. This build up can trap bacteria which will cause permanent damage to ones lungs. In the past those who had CF seldom lived beyond childhood. However, advances in treatment have extended the life expectancy well into adulthood.

In most states, new born screening tests for CF. When Kelsie was born, her CF was detected and early treatment was begun. I recall vividly the fear that our family felt, when we found that our new baby had this potentially dangerous disease. My daughter was frightened and so was her husband. While I shared in their fear for Kelsie, I was the grandparent and I needed to be supportive. I helped them locate resources in the community which led to a network of friends and supporters. I educated myself about the disease so that I could be a realistic and knowledgeable participant in family discussions. I wanted to understand what Kelsie and her parents needed to do to insure that she had the best possible chance for a good life.

My daughter and her husband have cared for Kelsie and helped her become a very successful child. Kelsie has played soccer, danced, and excelled academically. She has had many friends and in every way been a normal child. But she has also taken many medications, gone into the hospital on regular occasions for testing and treatment, and strapped on a vibrating vest every day to break up the mucus in her lungs. I have watched Kelsie grow to the edge of adolescence and in the process become strong and wise beyond her years. I have watched her parents demonstrate courage and love for their child that brings tears to my eyes, and I have watched all of them deal with CF with stubborn determination. We watched treatment procedures improve and we can hope for a cure that can help Kelsie. I can love, and hope, and wait, and when I am asked, I can help.

Every grandparent with whom I have talked has the same reaction, “Why couldn't it have been me”. But it can't be the grandparent. It is the grandchild who must cope with the disability. There is a deep feeling of injustice. Things just don't seem fare. Recently Xavier experienced several days of withdrawal into himself. Micki became depressed, but her daughter told her that it was alright. “You have to grieve”, Amber told her. We experience anger and grief and helplessness. We want so desperately for our grandchild to be well and normal, but then we realize that we have lived a long time and we have learned a few things along the way. We have learned that we cannot control everything, that we have to accept what we cannot control, that children are for loving, and grandparents are for supporting and giving. In time we learn to accept that, while we would not choose to have our grandchild have a disability, we cannot change that fact. We grow to understand that if we allow it to happen, that wonderful child can enrich us beyond our wildest imagination.