Grendel’s Kitchen

In two separate conversations this week, kind-hearted, well-meaning people said this exact phrase to me, referring to our life with the wee one: “It must be very hard.” One woman’s entire face fell, heavy with empathy for our suffering when I mentioned Li-Li’s deafness, and she added, “God bless you, you are a saint.” (See, mom, I told you I was an angel sent down to make your life joyful — this certainly counters your argument that I was dropped in the backyard by aliens and spoke in a strange tongue).

If you know me, you can stop choking on your laughter right now. How far off the mark they were. Although, John’s another story, I suppose, with that pretty internet clergy certificate and all that spiritual stuff he’s got banging around in his head and his heart. But if you also know Li-Li, you know that face-falling pity is a far cry from the delightful emotions she provokes. And I just don’t think of it as hard.

But it got me to thinking objectively about some of the words and phrases like deafness and special needs and disability and IEPs and auditory rehabilitation and increasingly clinical terms that crop up. And I took a step back and observed from a distance, for just a moment, the medical and bureaucratic miasma in which we sometimes find ourselves as we navigate educational paths and methodologies, discuss odds and timetables of moving surgical technologies not yet FDA-approved into practice, and try to make sense of the little red lights blinking cheerfully behind our daughter’s ear and a box full of black and pink attachments that would turn the Collective green with envy.

From a distance, it looks harder than it is.

Or at least, it’s not any harder than raising any typical child is, and it doesn’t seem to be stretching my relatively atrophied moral fiber into some saintly form. Maybe this is because we haven’t known the intensity of raising our own child before and don’t have some other “normal” to compare and contrast with our “abnormal” situation. Or maybe we’re just so incredibly lucky to be in a place where we have maximum-strength health insurance and state support that covers everything from the big ticket surgery and the space age technology inside her head to the top-of-the-line therapies and educational facilities. And we have access to the best of both worlds within the Deaf community: a beautiful language (ASL) and rich and unique culture, and a highly-evolved approach and massive resources for integrating those who are deaf into the hearing community.

I was asked if I felt equipped to raise a “special needs” child two years ago, when our adoption agency offered the chance to ‘fast-track’ our years-long adoption process. After some serious thought, I said “No. I don’t have the fortitude, the knowledge, or the means to provide a wonderful life for a ‘waiting’ or ’special needs’ child, a deaf child.” Inside, I thought it would be very hard, very sad.

But on the morning in Nanchang when I first suspected that Li-Li was deaf, a year ago today and just two days after holding her in my arms for the first time, my first response wasn’t the devastation or desolation I hear others describe upon learning of hearing impairment. Instead, my odd first instinct was to hide the fact from the authorities, from our China guides, and our agency representatives. I selfishly didn’t want them to take her from me because, I feared, they would see through me and know that I was obviously not capable of the ’saintly’ behavior that would be required in devoting myself to a new path of care for this child. I thought of ways to smuggle her through Hong Kong, to bribe the medical staff in Guangzhou into giving her a pass in the hearing exam. To my great relief, she passed that test with flying colors, miraculously looking to the left and to the right on cue when a squeaky toy was squeezed out of her field of vision, while several authorities and monitors watched closely after rumors of her deafness spread through our adoption group. I’d say a miracle occurred as she sat in my lap and I held her tightly, hardly daring to breathe. Except when necessary. <cough>

Li-Li passes her hearing exam (!) :

But now, I’m surprised to think that we’re really, truly raising up a strong little deaf girl and managing all that stuff I thought required saintliness, without being saintly in the slightest. It’s just the way it is, not harder than any other way of raising the little one, as far as I can tell. But maybe it’s supposed to be hard, and I’m totally screwing this parenting thing up — after all, I did take Li-Li into her speech class this week, while unwittingly sending her CI processor on a Starbucks run with John by leaving it in the diaper bag (hard for Li-Li to practice listening without being able to turn on the CI). And we have resorted to duct-taping her processor to her shirt after I left her at school and the shirt clip at home.

Or maybe it’s just not hard because we’ve been blessed by whatever it is out there or within us that has brought us together with this most delightful, aggravating, endearing, unique little “abnormal” person. Happy belated Gotcha Day little one!

At the Buddhist Temple of Six Banyan Trees to receive the blessing of the babies: