15 April 2011


Lula went for a follow up with orthopedics yesterday. A scan in January indicated the possibility of hip displaysia, so we kept her little legs in froggy position as much as possible and the new scan came back A-Ok. The orthopedist was very happy with how much she has chunked up and said that her thigh muscles look strong, which are the most important ones for walking. She may need to wear a little boot on her left foot when she starts trying to walk, but overall it was good news. Almost.

Except there was one sentence in 3 hours of being there that has superseded everything else. Betty Keating, her primary care nurse practitioner said, as we discussed her progress, "well you know, you don't need an MRI to see that her brain isn't developing as it should be."


Betty is amazing and the toughest broad on the block and she doesn't mince her words, but I don't do well with open ended statements like that. Sam has repeatedly mocked me for saying things like "I don't want problems, I want solutions!" If you're not giving me good news you'd better follow up your bad news with a plan of action because my brain doesn't tolerate open ended catastrophe (whose does though?)

But that was it. "You don't need an MRI to see that her brain isn't developing as it should". I am nothing if not a pragmatist, and I have held the blanket insistence of others that "she's going to be fine!" at arms length, knowing that these declarations aren't made because they are experts or soothsayers but because they generally want to end the conversation about my sick baby. But I don't know what to do with a statement like that. Moments like that make fussing over her infinitesimal progress (she can sleep on her tummy now! She likes being carried in the Baby Bjorn! She maintains eye contact for 3 or more seconds!) seem delusional and trite.

Afterwards Sam and I went to see Macbeth at BAM- his birthday present which we had to start orchestrating in February. I kept watching the performers and wondering, "were any of these people born with hypotonia? Did any of them not smile or have weak vocal chords?" Could Lady Macbeth have been so plotting and manic if she had been born with neurological issues? Maybe that's why she was so nuts!

I look at people constantly on the subway, or coming and going at the cafeteria at work. I watch for a sign that they were once like Lula. I never see those kids, the ones in the waiting room with us at Bellevue, listless limbs and empty eyes, drooling in elaborate wheelchairs- I never ever see them in the cafeteria. I don't see them playing Lady Macbeth at BAM. Is Lula going to be as invisible as all of them?

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