A duty, nay, a privilege

I have a friend whose baby was born around the same time as D. Back then she didn’t have a car so when I drove into downtown to go to Whole Foods, she would go with me and stock up on the things our neighborhood stores didn’t carry. We got some healthy food and good company, our babies got a car ride and a ride in a cart.

Once on a dark winter afternoon, as we sat in traffic that inched us closer to home, she told me her son, a year older than Lei, had been diagnosed with ADHD.

I wish I remembered exactly what she said about it, but all I remember is the black sky above and the rain hitting the windshield as I sat there thinking, “That sounds just like Lei.” Continue reading

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Is this a breakdown?

I keep wondering if this is what we’ll someday call a breakdown.

Someday maybe we will tell this story by saying that Lei kept having really hard years at school, that we kept trying new things, new interventions, new schools, but we couldn’t seem to find the right fit. And then we’ll talk about how we were so hopeful that attending her dad’s school would give her the security, academic challenges and sense of belonging she lacked. And how, just after she started there, she suffered a breakdown.  Continue reading

Bilateral failure

Back of Lei's head showing two CI headpieces.

Today Lei and I went to the implant center for integrity testing, and although there was a lot to it – some crying, some coffee, a large cookie, a whole bunch of equipment and numerous attempts to reprogram – I’ll just say that it did not go well. Lei will need surgery to replace her implants.  Continue reading

Look not upon the seed, look upon the tree

When I picked the color for Lei’s first hearing aids, it was a major philosophical decision: hide or flaunt?

Did I want her to blend in or stand out? Did I hope for her to be mistaken for normal? Did I dream for her deafness to go unnoticed or celebrated?

What do you think I chose? Her first hearing aids were bright pink.

Why did I think about it so deeply? My mom.

Continue reading

Doctors, fairy tales and oxytocin

You know what happens when your car is making a weird noise and you take it to the mechanic? Right. Nothing. Suddenly everything is smooth as silk and the noise has mysteriously gone away.

Lei has always been like this. No, she’s not a car, but when she was a baby she could have a high fever, or never make eye contact, or emit a horrible high-pitched shriek all day every day, but as soon as we were in the same room with a doctor, she was golden. Bright, alert, looking that doctor straight in the eye, as if to say, “I’m the healthiest, happiest, milestone-hittingest kid in the world, doc.”

And the doctors mostly thought I was extremely neurotic. It was great.

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Doctors I’d like to kick, or why Lei didn’t get a newborn hearing screening

When I took Lei to her three-month well check-up and told our family doctor that she hadn’t had a newborn hearing screening yet, he checked it for me right there in the exam room. What a cool guy.

He stood in front of me. Lei perched on my lap, facing him. He extended his right hand to Lei’s right ear and rubbed his fingers together so that a very slight shhhh sound was produced. She turned towards his hand. After repeating this highly scientific evaluation on the left, he pronounced a finding of 100 percent normal hearing.

“She can hear just fine, see?”

I’m not a violent person, but I do sometimes fantasize about finding him and kicking him in the head.

Because that is not a hearing test. It’s not. It’s not even a screening. It’s really a test to see if a baby will be curious about why you have put your hand outside their peripheral vision and what you’re doing over there.

Continue reading