The Spirit Catches You

So I'm reading this really excellent book, The Spirit Catches You and You Fall Down. It's a nonfiction account of a Hmong family who migrates to Merced, California only to get into down-and-dirty culture clash when their youngest daughter is diagnosed with epilepsy.

Never heard of the Hmong? Neither had I. For the record, they're a self-sustaining ethnic group that has migrated over the millenia from China to Indochina and most recently to America. Now you know.

What has struck me most in reading this book is the first-class parenting skills the Lee family have provided for their child. I have been alternating between awe and that same, miserable guilt I always feel when I hear about someone doing it better.

To illustrate, the severity and duration of the child Lia's seizures start to cause developmental disability, which in turn prompts a million different medications and tinkering of dosages, which ultimately fail anyway, and Lia has a massive seizure which leaves her essentially brain-dead. What do the parents do? They make her a big baby carrier so the mother can carry her on her back, keep her immaculately groomed, feed her with baby bottles and tiny spoonfuls of crushed meat. They treat her like royalty, that's what they do.

Then, I'm sorry to say, there's me.

My child has his adenoids out. He has one week of pain and nighttime episodes of waking up, keening and thrashing and refusing to take Tylenol because he's too upset. One short week and already I am worn out. The nighttime screaming has eroded my nerves to tiny, frayed shreds. The other day I threw the medicine spoon and shrieked my own share of obscenities when all the medicine I was trying to give Jordan drooled back out of his mouth. He doesn't like it, you see. I know this because he ran in 3am circles hitting things and saying "I don't like that medicine! I don't like that medicine!" Me, I went from calm and soothing to less calm to not soothing at all. One week.

During the day he has tantrums because of the pain. Then he's fine again for longer and longer periods every day, which, contrary to common sense, makes the next tantrum all the less bearable, because I'm no longer expecting it. He has also learned to play the system with remarkable speed. Having been given flat Coke to help with nausea early in the game, he now makes a face that would win an Emmy and claims "I'm sick" when he gets a hankering for the drink that refreshes.

For a week he has also been allowed to watch his movies on the living room TV. Not that he watches them. Instead, he flips scenes around and watches the same ten minutes of the movie fifteen hundred times.

For a week he has been waited upon and coddled. He has been fixed whatever soft food he can stand, at the drop of a hat. We have stocked the pantry with special food for just this purpose.

So in a way, he's been treated like royalty himself. Except at three in the morning. But the point is that it's only been a week. And he's going to be fine. I will not need to carry him in a modified Baby Bjorn or bottle-feed him. I just need to watch "this silly thing on the movie"--for example, Jim Carrey dancing in a tutu--five thousand times. That's not so bad, really.

So no, I'm not up to par with the Hmong parents who embrace their completely crippled daughter with grace and charm. I'm not there. Thank God I don't have to be.

As it is, I need the spirit to catch me, or I fall down.

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