Something that is hard for any child, and especially one going through somewhat invasive medical treatment is the lack of control. She tells me every day that she WILL NOT EVER have another shot again. Or that she is going to simply refuse to do any more dressing changes and she is very firm that interferon is simply not going to happen. She knows that she has no control but she likes to say it. Tonight she told me again that the answer to something upcoming is "No," and when I told her that she doesn't really have a choice she smiled and said, "I know that, I just like saying no."
Good for her!
I love that that is one of her coping mechanisms. Even though I know I have no control whatsoever, I am going to pretend I have a choice and exercise it. I'm going to totally use this. "Hey Rachael, let's just walk in together this morning and refuse the medicine. Let's tell them that we quit and run away fast before they catch us!" I should have recognized this sooner because even when she was at the height of misery her first day with the staph infection and begging, BEGGING to leave I looked at her and said, "Should I just unhook all this stuff real quick and we'll make a run for it? Those doctors look slow, I bet they can't catch us." She was so miserable but there was a twinkle in her eye at the thought of it.
I believe she's learning that though the things happening to her don't make sense, there is a necessary purpose and so I think that if I really did try to unhook her and make a run for it, she would stop me.
So that takes me to this incredible program offered at MD Anderson and many other hospitals around the world called Beads Of Courage. The concept behind the program is that "Every bead tells a story of strength, honor and hope." From their website:
What is the Beads of Courage Program?I cannot say enough how much I love this program. Rachael doesn't have any control over what is being done to her body right now and a lot of it is very confusing. But with a simple bead she gains understanding, a sense of ownership and a visual representation of her own cancer journey. I won't go over each bead and what they all mean but I can tell you this... If you ask Rachael, she knows.
The Program is a resilience-based intervention designed to support and strengthen the protective resources in children coping with serious illness. Through the program children tell their story using colorful beads as meaningful symbols of courage that commemorate milestones they have achieved along their unique treatment path.
how it worksUpon enrollment each child is given the Beads of Courage bead color guide with a detachable membership card. Their Beads of Courage journey begins when each child is first given a length of string and beads that spell out their first name. Then, colorful beads, each representing a different treatment milestone are given to the child by their professional health care provider to add to their Beads of Courage collection throughout their treatment as determined by the Beads of Courage Bead Guide (available from Beads of Courage, Inc.)
I'll be honest and say it does not make getting a shot or doing a dressing change easier but as her beads grow I see in her a sense of accomplishment. It goes from "It happened to me." to "I did it!"
And that is a gift.