I was talking to the nurse-practitioner today about Ramona’s tenuous long-term prognosis. Trying to get concrete answers from her is like squeezing blood from a stone. And it doesn’t help that I assign special meaning to every time she raises her eyebrows, looks over my shoulder or checks her clipboard. I mean geez, she might of just had a bad piece of fish or something.

I finally got her to tell me that maybe, perhaps, possibly, a demonstrated ability to gain weight (on Ramona’s part, not mine) could, might, may mean she is also growing her arteries. I was ecstatic. Finally something I can do. Something I can measure. Something I can control.

That’s the noodle-baking part of all this. Now that Ramona is sick, what can I hang my hat on? I feel so powerless. I’ve been turning this around in my head, looking for some comfort in what now seems like a chaotic and dangerous world. Then tonight I was reading Simon his bedtime story “A Color of His Own”. It’s about a chameleon that is always changing color and just wants a color of his own. He sets up camp on a green leaf and by page 6 he’s turned yellow, red, brown and then finally black as his leaf falls and he succumbs to the long winter night. When spring comes he meets an older and wiser chameleon who tells him that although they will always have to bend to the change around them, they can at least stick together so that they can be brown together, purple together, even red with white polka-dots together.

The simplicity and wisdom of this message brought me to tears for the first time in days. Togetherness can be my comfort. Togetherness can be my substitute for control. Andy, Simon, Ramona and I might not be able to know what our situation will be from week to week or month to month, but we will know that we are together no matter what. If Ramona recovers fully we will have weathered the storm together. And if the worst happens and we lose our precious girl, we will be together in that too. If Ramona dies too soon, a part of us will die too. If we have to go on living without her, a part of her would still live in us. That could be our togetherness and our comfort.

As always, thanks for listening, Jane.

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