We ordered chinese take-out last night. I always open my fortune cookie even though I rarely eat it. And even though I put absolutely no stock in anything found inside, I do usually glean something wise or at least ironic. And my lucky numbers for the week.

So I guess I was looking for something eerie like, “Your daughter will live long and prosper.” Or something way off and laughable like, “You will take a long trip to a sunny destination.” Instead, my fortune said, I kid you not, “Tyrants have not yet discovered any chains that can fetter the mind.” Wha?

I think this is meant to reassure me that although my free will may be compromised by some evil dictator, my mind will always be free to think any and all crazy types of thoughts it wants. Yippee. I think I’d rather get the fortune that says, “Scientists have just discovered a drug to fetter the mind!”, then I could actually sleep at night.

Yesterday I met for the first time with a 22q11 support group in my area. I have been looking forward to it, and dreading it. As expected, it was good to meet other moms who are making peace with this diagnosis and also really scary to be in their company. I like to connect with people, hear their stories, ask big questions. But the answers to my big questions left me with a lot of fear, and more questions. Maybe I should stop asking questions.

When Andy and I talked last night, we were surprised to find that we’ve both been entertaining some pretty dark thoughts. Warning: Some of these thoughts are not warm or fuzzy, please do not freak out and call the authorities, they are just thoughts. For instance, I left my meeting wondering if maybe someone else could take care of Ramona until we know what’s going to happen to her. Or wondering if it would be best for all of us, Ramona included, if she didn’t make it.

I think that is my overwhelm and fatigue talking. Oh, and grief, which makes you a whack job. I also think that now that Ramona has stablized somewhat, I am spending more time thinking about what this all means for me, and less time thinking about what this is like for Ramona.

So today I am reminding myself of the profound sense of pride I had a few weeks ago. That Ramona was strong enough to survive without any help for so long. That she was brave enough to make it through surgery. That she has what it takes to accept the help we are giving her now and is using it to grow. I am reminding myself that she is a baby and if we don’t fight for her and love her and keep pressing in to know her more, we are failing her as parents. I am taking time to cuddle her and thank her for teaching me so much about myself and about God. I am whispering “Grow!” in her ear.

And I am scared for her future and our family’s. So I am reminding myself that it will be a privilege to discover what challenges might be in store for her. Please pray that we will be able to take things one step at a time. Pray that we will not lose sight of what a precious gift a child is under any circumstances. Pray that Ramona will continue to amaze us with her strength and preserverance. This is a pic that Papa took, she loves him so much.

Love, Jane.

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