Langer Loksh

Happy Birthday, Charlie!

Post Bac

Sammy: What grade is Julia in?

Buzz: She's finished with college, and now she's in the Peace Corps.

Sammy: So there IS something after college!

Welcome home, Julia.

The Real Thing

Exactly one year ago right now, I was laboring Charlie into the world. There's so much that I still need to say about this incredible year, so many more posts I'm going to write this week. I just want to get this down while I have a few seconds. Summer and Jeff are on their way back from the dump, and Charlie is momentarily distracted by an upside-down tin bucket... no, wait, his arm is caught in his fleece pull-over, hang on... I just want to say, that one year ago right now, when I was lying in a delivery room panicking at the prospect of breastfeeding another baby; or that one day later, when Jeff and I were spooning in my post-partum hospital room, terrified beyond words that our new baby boy faced a painful, difficult life; that I would not have believed you if you told me that in one year's time I would be so utterly... hold on, he's trying to pull off the patch... so utterly, simply, just, existentially... he's waving a maraca now, so cute... just...

Is it possible that until now I didn't even know what happiness was? Things aren't perfect, but I still feel overwhelmingly joyful. And that's how I know it's real.

"It is for this reason that only the RingMaster is given the ability to customize the navigation."

After an email exchange with a WebRings tech support person that proved the stereotype of tech support people (overly tense, lacking all social skills, needing desperately to get laid) to be charitable, I have determined that the only way I can get the necessary WebRings logo onto my blog will be to make sure that there's always a post on the main page that includes it:

And to that super friendly WebRings person: shut down your machine and go outside. Do not be afraid. That big yellow ball in the sky is called the sun. Allow it to shine upon your skin; it will help you to feel more human and less like the salamander who lives in my basement.

The Great Debate, Part II

On Wednesday in the EI parenting group we had a visitor named Eileen Jones, the founder of The Gift of Hearing Foundation. She had a severe infection at age five that damaged her auditory nerves. She slowly lost her hearing until a couple of years ago, when at age 45, she became totally deaf and got a cochlear implant. A cochlear implant is like a bionic ear. A microphone on your ear transmits sound to a receiver inside your head. It's somewhat controversial among deaf adults, particularly those who grew up deaf. Nowadays they implant babies, and there are a couple of kids in our group who have them.

Eileen, like most implantees, has only one cochlear implant--unilateral hearing, something like Charlie has, only Charlie does have a little hearing in the right ear, and the normal hearing he has in his left ear is sharper; he can hear more frequencies than what an implant provides. Eileen has about 97 percent hearing in the implanted ear, and nothing in the other, she told us. She started the foundation because she is so happy with her implant and wants everyone to know about them.

I was struck by Eileen's inability to hear what we were saying unless she was looking at the person speaking. Is this what it's going to be like for Charlie?

No doctor, audiologist, or speech pathologist has advised us to get Charlie a hearing aid. But parents in my EI and Yahoo! groups all say we should be pushing for it, to give him the most help he can get. This article makes a good argument to aid.

Most doctors don't think there's a big benefit to aiding a unilateral loss, and in Charlie's case, because of the shape of his ear, it'd be significantly more difficult than aiding a regular ear, on which you can just hang a hearing aid like a cell phone ear boom. Charlie would have to have a bone-anchored hearing aid with a headband, until he is old enough to have one surgically attached to his head.

This morning as I snuggled with Charlie on the couch, Summer emerged from her room. She made no sound, but the 150-year-old steps creaked very softly under her little feet. Charlie turned exactly the right way. He could hear his sister coming down for breakfast and probably knew what was coming next: the opportunity to fingerpaint his high chair with maple syrup. Only time will tell whether he needs a hearing aid or not. I just hope we figure it out before school becomes a scary place for him.

In Summer's Room

Perspective

At the playground, a school age boy bouncing a basketball shouted to his friend, "There's something wrong with his eye!" Meaning Charlie, who was pushing a walker around near the hoop, oblivious to the band-aid patch on his left eye. I looked over at the kid blankly and he stared back at me with his arms hanging loosely at his sides, apparently horrified by himself. "I have no idea why I just said that," he said. I shook my head to show it was no big deal. "The doctor says if I cover this eye for an hour a day, the other one will get stronger," I said. "Oh!" said the kid, and went back to dribbling.

The eye doctor's prescription has given me an opportunity to safely experience something that I once feared--the stares of others. I now know that I don't have to fear the stares, and it's not because the stares aren't awful. Oh my God, I don't know how parents can handle it on a regular basis. No, I don't have to fear the stares because they're not going to come. We don't get the stares if Charlie doesn't have the eye patch on, so Charlie's facial differences are apparently not noticeable enough, or not upsetting enough, to provoke staring. It's a cute birth defect. (Cute, but don't think I haven't felt a little sad that it would be pointless to enter Charlie in the Regis and Kelly cute baby contest.)

The other night Jeff and I watched the Facemakers episode that included our young friend Michael. (Thanks, Jess, for recording it.) It was fun to see Michael doing ollies or whatever you call it on a skateboarding ramp, and then asking the surgeon to straighten out his jaw and make his ears match. The other two cases, however, were so disturbing--an infant with no jaw and only one limb; a four-year-old who is developmentally one year old and whose craniofacial defects are so severe that her brain is now bulging out of her skull--that we both had to bust out the finger filter to get through the show. We then stayed up all night talking about how we feel about Charlie's situation. It was good for us.

As much as I want to (because I need to get it down somewhere for my eventual book or article or just for myself, and this is the only place I'm writing right now), I can't blog about Jeff's feelings. As for me, at the moment I'm feeling like the whole thing is no worse than a bad haircut.

He's Huge in Germany

Haven't you always wanted to wax David Hasselhoff's chest hair? Go ahead, enjoy a little manscaping on this sunny Friday.

Stork Stories

Until today, this was my favorite stork story: My friend Jen's husband has a brother who is gay and has a--a gay, um, spouse. They are lawyers in New York City. They wanted to have a kid so they got a surrogate mother in California. They made embryos with sperm from both men and implanted one of each, figuring one would take. Both embryos took, and now the two dads have boy/girl twins, each child biologically related to one dad.

Now I have a new favorite. A while back someone who was adopting a child in Guatemala posted a message to my microtia Yahoo! group that there was another child, a brand new baby boy named Nicholas, who has microtia, waiting to be adopted in Guatemala. You may remember Amber from Texas, whose daughter is a few months older than Charlie. Amber makes the awareness bracelets that I felt so ambivalent about. She posted a message today that said the proceeds of the bracelets will now be used to help her and her husband adopt Nicholas from Guatemala.

When I read that, my eyes got a little watery and I couldn't stop smiling. I bought five bracelets.

Oops

If you've looked at this page in the past 24 hours you probably saw the "Circle of Smiles" and "Google Search This Site" boxes on the left. Oops. I was experimenting and forgot to turn them off. They don't work yet. Circle of Smiles is a web ring of sites about families dealing with craniofacial stuff, and I haven't figured out how to paste the graphic and link into my sidebar yet. The Google thing, which I got from Typepad, doesn't do what it advertises--it just does a regular Google search.

And that's what goes on behind the scenes at Langer Loksh.