Thursday, November 29, 2012
Leukemia - Jemma's Older Sister
When I was growing up I remember all the attention children received when they came to school with a broken leg or sprained ankle. I was somewhat jealous of that attention. I'm not sure I fully understood the trade off between illness and attention until I damaged my knee in high school and required surgery. During that time I learned about all the things I couldn't do, and would have to change due to my injury.
My oldest daughter seems to be struggling with a similar thought process. She feels that Jemma is receiving special treatment because she has Leukemia, and that her life is significantly worse. This is a continuous issue for her. Despite the fact that I have talked to my daughter about this, as has my husband, both sets of grandparents, and several aunts and uncles nothing in her mind seems to be changing.
When I was young and had jealousy over other children's injuries, I only saw the attention they received. Since I did not live with them I didn't see all the difficulty they were going through. I would think that by living in the same house with Jemma, my daughter would see that Jemma's illness is not all fun and games. Jemma cannot dance, cannot go to school, cannot go to friend's houses, cannot visit the grocery store. Jemma has a tube in her chest, has lost her hair, has open sores on her bottom, must take several pills per day, needs to change her bandages and has to visit the hospital several times per week. But none of this seems to make any difference to her.
So my conclusion is that I need to try another method to change her way of thinking.
This week I'm trying a few things differently. Although my eleven year old sees some of the bad things about having Leukemia, I think she has missed a large portion. When Jemma spent 35 continuous days in the hospital she was far away on vacation. Out of sight, out of mind? Now that she's back she still misses a lot of the bad stuff. When I change Jemma's bandages, she is downstairs enjoying a book. When I get up in the middle of the night because Jemma has a fever, she's tucked snugly in her bed. Again - Out of sight, out of mind? When she visits Jemma in the hospital, the doctors and nurses try to stay away. They respect family time and will gladly come back 30 minutes later to check blood pressure. Therefore, during visits, my eleven year old sees, Jemma playing cards, doing crafts, eating and playing her iPad. She misses all the medical stuff.
One thing I am now doing is bringing her to the hospital each and every time I can. I think she needs to see more of what is actually going on. She needs to spend the day in the outpatient room in the hospital while Jemma has blood drawn, waits for the results, receives a transfusion or is poked and prodded in other ways.
A second thing I did this week was ask her to create a few lists. What is good about being healthy, bad about being healthy, good about having Leukemia and bad about having Leukemia? What does she get to do with me, and what does Jemma get to do with me? Here are some of her answers:
Good Things About Being Healthy
play with friends
dance during fasching
go to the park alone
go on cruise ships
go on vacation
Bad Things About Being Healthy
plenty of cleaning
Good Things About Having Leukemia
can choose out of almost anything to eat
treated almost like a God
receive no slappings or spankings (she doesn't either?)
hardly ever receive time-outs
hardly have to do any cleaning
get the best kitchen clean-up job (Jemma's job is to dry the dishes)
only have to bathe every other day
Bad Things About Having Leukemia
can't have friends over
can't go to the park
have to take tons of pills
can't dance at fasching
get poked and prodded a lot
Things Jemma gets to do with Mom
Things she gets to do with Mom
After reading her lists I told her that the following week for three days she could choose to pretend to have Leukemia. We would do everything possible on her lists of the good and bad things about having Leukemia. Not only that, I would go above and beyond her list to make things more agreeable to her. She could eat anything she wants, not participate in any cleaning activities, would not be required to bathe, would have no school work and I would stay with her crafting, reading to her and playing games with her. She might even get a get well gift. Unfortunately, she would lose her hair. I would put bandages on her and change them. She would not participate in any activities such as dance, piano and violin. She would swallow a few whole dry beans per day (pills). I would attach her to the music stand with yarn to represent being attached to the iv cart.
After the three days, if she decided she liked having Leukemia, we could continue to pretend she had it.
Well she considered it for a few days and then decided she didn't want to have Leukemia. She didn't want to lose her hair. She thought she could deal with the other things, but thought that being connected to the music stand for three days sounded like a pain.
Since we have had this conversation she hasn't complained about much. I hope she feels heard and understood, and starts to believe that her life is pretty good.