Support groups offer a special perspective for parents of children with cancer, as well as fill the void left by the withdrawal or misunderstanding of family and friends. Parents in similar circumstances can share practical information learned through personal experience, provide emotional support, give hope for the future, and truly listen.
Coping with life-threatening illness requires unique perspective—the ability to accept the gravity of the situation while balancing other aspects of living. In support groups, many families find this frame of reference, for there are always those with more severe problems than yours as well as families whose children have completed treatment and are thriving. Just meeting people who have lived through the same situation is profoundly reassuring.
The group was a real lifeline for us, especially when Justin was so sick. We looked forward to the meetings and were there for every one. It was a real escape; it was a place to go where people were rooting for us. People from the group would always swing by to see us whenever they were bringing their own kids in for treatment. They always stopped by to visit and chat. We amassed a tremendous library of children's books that the group members would drop off. The support was wonderful.
I felt like I was always putting up a front for my family and friends. I acted like I was strong and in control. This act was draining and counterproductive. With the other parents, though, I really felt free to laugh as well as cry. I felt like I could tell them how bad things were without causing them any pain. I just couldn't do that with my family. If I told them what was really going on, they just looked stricken, because they didn't know what to do. But the other parents did.
Our Tuesday gatherings were an anchor for us. It was a time to meet with parents who truly understood what living with cancer meant. These parents had been in the trenches. They knew the midnight terrors, the frustrations of dealing with the medical establishment; after all, it was an alien world to most of us. They knew about chemo, hair loss, friend loss, and they knew the bittersweet side of cherishing a child more than one thought one could cherish anymore. We gathered to cry, to laugh, to whine, to comfort one another, to share shelter from a frightening world. It was a haven.
Cancer can be a very isolating experience. For the parent of a child with cancer, the issues the other parents on the street are dealing with seem light years away. But the moms and dads in the kitchen at a Ronald McDonald house can just look at a child on prednisone wolfing down a complete second dinner, and tell the new parents how fast the appetite goes when the prednisone is tapered. They understand each others feelings and emotions because they are sharing the same experience. The understanding of a parent of a child with leukemia cuts across all social, economic, and racial barriers.
My 2-year-old daughter was diagnosed one week after I gave birth to a new baby girl. I remember early in her treatment, I was sitting with Gina on my lap, and my husband sat next to me, holding the new baby The doctor breezed in and said in a cheerful voice, "How are you feeling?" I burst into sobs and could not stop. He said just a minute and dashed out. A few minutes later a woman came in with her 8-year-old daughter who had finished treatment and looked great. She put her arms around me and talked to me. She told me that everyone feels horrible in the beginning, and it might be hard to believe, but treatment would soon become a way of life for us. She was a great comfort, and of course, she was right.
There are dozens of different types of support groups ranging from those with hundreds of members and formal bylaws to three moms who meet for coffee once a week. Some groups deal only with the emotional aspects of the disease, while others may focus on education, advocacy, social opportunities, or crisis intervention. Some groups are facilitated by trained mental health practitioners, while others are self-help groups of parents only. And, naturally, as older members drop out and new families join, the needs and interests of the group may shift.
We have found that it is hard to keep people coming to monthly meetings, even though we have a large membership. We have a fifteen-member board, which meets every month and plans parties and informational meetings with speakers. We have parties for Christmas, Easter, and Halloween, as well as trips to amusement parks and picnics. Our motto is, "If there's food, families will come." We are also lucky to have a full-time staff person who takes care of information, advertising our services, correspondence, and connecting parents with similar needs.
Our group is very informal. We do have two social workers who are considered the facilitators and are there as resource persons. We just talk about whatever anyone wants to discuss. Occasionally we have invited speakers in. I remember having a psychiatrist discuss stress management, and we also had a talk on therapeutic massage. We have formed close friendships from the group, and we still go twice a month, even though our daughter is a year off treatment and doing great. I think our presence comforts the new families.
Parents from small, isolated communities may have a difficult time finding a support group in their area that fits their needs. For these families, finding emotional support is possible by computer. Many online discussion groups exist for families dealing with childhood cancer. Such groups can provide parents with the understanding that only another parent of a child with cancer can give. Topics might include coping skills that have been effective for other families or helpful medical information that you can use in your fight against childhood cancer. Participants in online discussion groups, just like those in face-to-face groups, may provide incorrect or upsetting information. Take any concerns or questions you have to your physician or nurse practitioner.
The support that I have gained through online discussion groups is priceless. I have received a great deal of comfort from my participation in these groups. They have enabled me to connect with families from all over the world, many of whom are fighting the exact same disease. I have often come to my computer in the middle of the night, when everyone else in the house was asleep. I can express my fears at 3:00 A.M., and know that someone will always be there to reassure me with the knowledge that they have felt these things, too. That's one of the most beautiful things about these groups. Someone is always there, even in the middle of the night.
How ironic that we subscribed to this list in a moment of panic, with a black cloud lined with despair lingering above. But now we can say we have lassoed cyberspace, and here, among new friends, we have found and we have shared love, hope, support, disparity, informative information, mutual stories, mutual questions, thoughtful and sincere answers, honesty, disagreement, pain, inspiration, fundraising, friendship, humor, enjoyment, as well as understanding. This list reflects the roller coaster of life. Activity on this list enables an individual to place that initial black cloud in their back pocket, hold sunshine in their hand, and watch hope dance above.
Appendix D, Books and Online Sites, contains further information on Internet support groups.
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