Archive - October 26, 2015

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What do you mean “under-developed”?

What do you mean “under-developed”?

Lola has migraines. Lola is joyful. Lola has flashes of light. Lola is difficult. Lola’s eyes turn red and water. Lola fights through every day determined to use the little bit of “vision” she has. She’s not mature enough, and frankly, she has too much fight to allow herself to rely more on touch than “sight.” It’s something that frustrates me and challenges me all at the same time.

lolabrain

She never takes the easy road. Probably, because life has not been easy on her. And when she’s hard on me, I return to that place two years ago in an ornate wooden government office with low lighting. I return to the pictures I saw that challenged my mostly normal family.

Last week Lola had an MRI. The neurologist said lots of scary things that led up to a Saturday night with Daddy, a candy shop and Vanderbilt University. No, she won’t need sedation we told them. She will be very still, she listens to instructions very seriously. And she did. She has also reminded me at least 20 times that her earrings are still in daddy’s car.

I honestly didn’t think about the MRI until my phone rang today. I picked it up and heard our pediatrician on the other line. “Has anyone talked with you about this yet?” she said. No. They hadn’t. And when the conversation starts like that, and you’ve had the idea of a tumor put in your heard you get very worried, very fast.

Very quickly she dispelled my worries about tumors. But she went on to say a lot about how not normal Lola’s brain is. While she read the report I was mostly quiet because I was thinking about how smart Lola is, how determined Lola is… how she made all A’s this quarter and learned English in FOUR months. But I’m also thinking about how many struggles she has and how many years passed before I, her mother, held her for the first time.

There is still so much sifting to do. I’ve read an obscene amount of of medical journals and I have yet to have the meeting with the neurologist. Just wait until I meet him head on with my newly acquired knowledge… maybe Lola gets that fight from me.

A lot of words and possible diagnoses were thrown around and I was given some support group and advocate numbers. But some things didn’t fit and we are in that space of avoiding denial but wondering if miracles are happening. And when I say wondering, I use that term loosely because we see a miracle every day in our astounding daughter.

It’s another chapter in the Goodbye book, one that we hope to write with grace and wisdom.

 

All Content © Erica Ho, Goodbye Normal