Bring it on, audiologist

I’m sitting here wondering why I’m so emotional right now. I got mad and stayed mad at D’s five-year-old antics earlier. I’m not usually like that. And now – I wish I was kidding here – I am depressed because the sandwich I ordered tastes bad and I don’t want to return it. Yeah.

Then it hits me, of course I’m emotional: I’m about to take Lei back to the audiologist.  Continue reading

Hearing again and saving herself

During Lei’s days off last week, I tried having her wear her right processor again, and surprisingly she was able to hear decently through it. Over the last week the cutting-in-and-out problem seems to have resolved completely. Lei can hear again!

She still talked about being homeschooled, however, and I asked her how she planned to stay in touch with her new friends at school. “I’ll chat with them online,” she breezed.

She had it all worked out. But on Tuesday when Lei, her dad and I met at midday with the school case manager, audiologist and hearing itinerant, Lei did a 180.

“I talked with my two good friends here and they said they wouldn’t be friends with me if I quit going to Madero.” She grinned. “So I’m staying!”

Let’s hear it for positive peer pressure!  Continue reading

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

“My implants were like a bridge, but then … poof!”

Lei's words: I felt like I was in a sound-proof bubble.

Lei is home with a cold today so I decided to ask her to tell me how it has been for her to have her cochlear implants both fail. She’s a bit more reticent than usual because of her cold – normally she is quite talkative – but these are some of her thoughts on her life over the last ten days.

 

What was it like when you stopped being able to hear with your cochlear implants?

Things were going great at school. I was making friends and actually becoming kind of popular. Suddenly the implants started fritzing out. Continue reading

Total silence: When cochlear implants fail

This time of year is full of anniversaries. Exactly 10 years ago, as Hurricane Katrina devastated the city of New Orleans, my girl Lei was first diagnosed with moderate-to-severe hearing loss. Lei got her first CI in early October last year. And next year at this time we’ll remember that just after Labor Day, 2015, her left implant failed. Then her right implant.

That’s right. Lei now has no working CIs.  Continue reading

Look not upon the seed, look upon the tree

For the past three weeks Lei has had a lot of joint pain and I have been worrying once again that she could have juvenile rheumatoid arthritis. I can now re-post this piece from earlier this summer with the good news that she does not have JRA. She does have hypermobile joints and will need physical therapy as well as pain management, but I’m still breathing a huge sigh of relief.

Parenting a Deaf and Gifted Child

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.

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Let the tiger out: Validating my daughter’s anger

The tiger in my chest, by Elahe Bos, www.plantlovegrow.com

Last night Lei and I happened upon Elahe Bos’ blog, Plant Love Grow. We were loving the artwork and the creative approaches to social emotional development when we stumbled on The tiger in my chest, a printable story about anger that includes calming exercises to avoid losing control. As we read it, I reflected that we can’t just keep the tiger caged up all the time. So I asked Lei about her anger, and what she wants to do about it.

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Second Nature

Lei and I attended a performance of Second Nature today and really loved it. It was a rare treat to be so close to the performers and be moved by a work that speaks directly to young people about their decisions relative to the natural world.

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It sounds and feels crazy, but Lei is going to a new school

Watercolor with the word Love and silhouettes of two people

I just got back from walking my son to school. My husband and daughter are fast asleep because their school hasn’t started yet.

What’s that? Their school?

Yes, in spite of everything awful that Lei has gone through at schools over the years, we’re going to try one more. This is the school where my husband teaches.

Continue reading