I will preface this post with the fact that with all the burdens my daughter endures, she does so with as much grace as a 6-year-old can give. And, extra special attention and love are given to her to try to compensate all the changes in her world. She has exclusive privileges to counterbalance the lavish attention on her brother.
Being the sister of a child with cancer is not easy. Hope’s world was turned upside down 16 months ago. The day her brother was diagnosed with brain cancer. She was only 5 years old and she and her brother were dynamic opposites in personality. It started off for her like a game, she got to have a 10 day sleep over at her best friend’s house. That got old though and she missed her family. She knew her brother was very sick and in the hospital. But, her capacity to understand the gravity of the situation was nonexistent.
When she came home, a new grandma she didn’t remember was at her house. Mommy was nowhere to be found and neither was her brother. She was shuffled back and forth between the house and the hospital for a month. She couldn’t touch her brother for a few weeks, and he was in a wheelchair. This was confusing and scary. The fact that he couldn’t walk and was in pain a lot of the time was difficult to explain to her.
As the weeks progressed John was ready to come home. This was the hardest of all as it called for the biggest concessions on her part. Her brother came home in a wheelchair and with a walker. But, he could not walk unassisted and much of our attention was focused on keeping him safe. If John took a toy from her, there was no touching him or taking it back. It took a tremendous amount of self-control on her part. If he hit her she could not touch him. If he fell at that point he had a freshly placed plate in his head and he could be gravely injured. He had a lot of unresolved brain damage that caused erratic behavior and temper tantrums. Plus he was simply frustrated that he couldn’t make his body do what he wanted it to. He was down right mean. Hope really had to give him space and that was hard for her. If he went where she was and caused problems, she simply had to vacate. Walk away and not react to him. That is a lot to ask from a 5-year-old.
As time went on and John got stronger Hope still had to deal with the brain damage her brother suffered. Erratic behavior, preferential treatment (in her eyes), aggression, and a very high volume of voice. (I mean LOUD). She had to endure John and his aggression without reacting, trusting us to take care of each situation. (she wasn’t always good at this, but I have to give her credit. She did well).
Then there was the lavish attention. John became a junior celebrity in our community. People were always careful to include Hope, John was still in the lime light. Hope was a champ about this. I think she enjoyed the extra special activities and began to understand that John was special because of all he endured. She benefited from his cancer by receiving extra love and attention too.
Today, John and Hope are friends some days and enemies other days. They play together much better than they ever did before John’s diagnosis. There on an even keel as far as attention goes. John’s brain damage is in check and he is not so fragile.
Hope really endured a lot as a sibling. She took many hits for the home team. I am so proud of her. She is part of this tragedy too. She knows the truth of the situation now, and loves her brother. She understands the fragility of the situation and does her best to accommodate her brother as we ask her to. She really is a hero too.