Wednesday, September 04, 2013
Tomorrow and Thursday evenings I will be with our friends, as they try to make something approximating the Jewish high holidays.
At these events, I will do my damnedest to keep my self together.
I am seething with rage and impotence. How bad is this? Imagine your worst nightmare. Your worst loss. The worst ache of your heart.
You are still in the junior league.
But don't feel bad about me. I'm just the beloved auntie. My presence provides assistance to the parents, gives that amazing, stubborn, willful beast of a child just one more target for her defiance.
And I'm good being that. Cuddle me only as a last resort, tease me in the meantime, drive me crazy.
But please, Becca, oh please. Keep being here to exasperate me. Please keep being that contrary little thug who loves best on her own terms.
You're a thug. Please, for all of us, keep being a thug.
I can't imagine life without you.
Sunday, September 01, 2013
For those of you following Becca's story, the family arrived home for a few days visit before they have to return to CHOP to begin intense radiation therapy. I organized a potluck housewarming party at their house yesterday and at least 60 people showed up. Becca loved seeing all her friends, and her teachers came as well. It was heartwarming to see the outpouring of love.
Other than being a little overtired and very cautious with her body because of the ports, Becca was her usual funny, stubborn self. She has a very puckish personality and is likely to give you a giant hug--unless you ask for it. Then, no way. We had a long and giggly conversation about the time she threw up on me--she thought that was hysterical.
Her parents were glad of so many friends to hug and the support. As the evening ended and they put the kids to bed, DH, another friend, and I cleaned the kitchen and got the house back into pre-party shape for them--I didn't want any of the burden to fall on them.
I will see them again on Wednesday and Thursday nights, when it will be quieter and we can relax and talk. But I think it was good for them and good for the community of people who are supporting them to have a day where we could all come together.
Monday, August 26, 2013
When confronted with someone's grief or pain, someone's terror for a sick child or other loved one, someone's own illness, it is common and understandable to want to ameliorate that grief or pain or terror by cheering them up.
STOP DOING THAT.
When you tell a person that it's happening for a reason, or that it's all going to be okay, or that God has a plan, you are putting a burden on an already overloaded person. Your interaction includes an expectation of a response, and that response contains an expectation of feeling better. You may not realize that you are doing this, but trying to cheer someone up by minimizing their grief or pain carries the message that says, "You should stop feeling the way you are feeling and feel better now."
That's trivializing what the person is going through. And creating an expectation that they must either respond to or silently try to ignore. In trying to help, you are making it worse.
So what should you say? Some version of "I am so sorry. This is terrible." It carries no expectation that your words will magically lighten their burden; it just acknowledges their pain. By acknowledging their pain, and not putting an expectation upon them to feel less of it, you are allowing them the choice to share more if they wish. If it's someone you know well, they might want to talk about it. If they don't, it's not a reflection on you.
Friday, August 23, 2013
I have gotten lots of comments and messages from people who are praying for Becca and her family. And I deeply appreciate those messages and those prayers. I am certainly praying as well. It's a comfort to know that people are sending so much healing energy to her.
But I'm having a lot of trouble, emotionally, with the "Put everything in God's hands; God will cure Becca" people. I know they mean well, but their version of God fills me with fiery rage.
Because if God is so freakin' clever and all-powerful, why is Becca going through this in the first place? Why was there a tumor at all? What kind of psychotically insecure egomaniac is this "God" person that he's up there thinking, "Wow, I'm feeling underappreciated. I think I'll give this innocent child a brain tumor that will cause her to spend months suffering and put her family through the kind of unimaginable trauma that will lead to life-long emotional scars, just so I can cure it and have a bunch of people appreciate me."
Why would *anyone* want to worship that kind of sadistic lunatic? If I met him, I'd just want to punch him in the throat.
I don't believe that God controls all things in our lives and this is all part of some kind of master plan. I believe that when God gave us free will, that meant stepping back from being a controller, not just of our decisions but also of the world in general. But I believe that we were blessed with a special kind of grace: the power of prayer. I believe that we were graced with an ability to affect events, not hugely, but to nudge them to a better place. We can't pray away a hurricane, but we might be able to diminish its power or "scooch" it aside a little.
We might be able to increase a child's odds of surviving.
And so I am grateful for the power of prayer, and the fact that so many people are praying so hard. But please don't tell me that this is all "God's plan."
Wednesday, August 21, 2013
Pathology report in. It's the bad kind of tumor. With 6 weeks of extreme radiation treatment and another year of chemo, Becca has a 50/50 chance of seeing her 10th birthday. I can't even process it.
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