On Monday, Abby looked up at me with her big brown eyes. As tears quietly ran down her face and said, "Mommy, I don't want to be Abby anymore." And she meant it. At five years old she now understands that other kids don't spend their days enduring one medical procedure after another. She knows people feel sorry for her and that bothers her more than the medical tests. She doesn't want pity. She wants to be a normal little girl.
I wish I could stop all of this, and give her the break she obviously needs. The medications she is taking are draining all of her energy but if we stop them her pain would be crippling. Abby's has one appointment after the other lined up with specialists who are trying to help her regain her health. Spreading the appointments out is impossible so we are continuing to run the gauntlet.
Yesterday, Abby slept every time she was still for more than a minute. She is simply exhausted. I pulled her out of the car, sound alseep and took her into her hospital's sleep lab. Thanks to a wonderful friend, Jessica, she knew a lot of what was going to happen but even prepared, it would have been hard for most people to handle. She didn't like having sticky stuff smeared in her hair or having electrodes dotting her body. I thought the tube they put up her nose was annoying her but by morning we realized she had reacted to it and her lip was swollen.
She didn't want to do the sleep study but she did it without complaint. She was very quiet but allowed it all to happen. After a couple of last minute bathroom breaks, she laid still and went to sleep. She stayed asleep even when wires were being adjusted, until we woke her up in the morning.
On the way home we stopped to eat a promised breakfast. She seemed glad to be there but before we were finished she got a far away look in her eyes and the tears started trailing down her face again. Not bratty, "I didn't get my way" tears. They were quiet soulful drops no 5 year old should ever cry.
So now you know why I am searching for fun activities Abby can do when she is tired, often with little strength and fragile emotions. We need to find ways she can be a five year old little girl, instead of a battle hardened cancer veteran.
Would you help us think of LOW MAINTENANCE, LOW PREPARATION games, crafts, activities and things Abby can do? Use the Idea MckLinky list below to add your suggestion: