Langer Loksh

A Happy 4th (and 38th, and 65th...)

Our friend Ann H. B., who has known me practically since birth, was kind enough to host us at her home on Martha's Vineyard over Fourth of July weekend. Shockingly, she is still speaking with us, despite Charlie's protracted meltdown over the Doritos I refused to buy him at the Alpaca farm. (Mortifying.)

Among other activities: Jeff caught two bluefish; Charlie grabbed the brass ring on the Flying Horses carousel not once but twice; Oscar dabbled his toes in the ocean; Summer got a handmade skirt at a craft fair; we ate very delicious fried clams at the Gay Head cliffs. We celebrated my mom's birthday (three cheers for Medicare!) and mine; we watched the Edgartown parade; and then, at night on the beach, we could see fireworks from about six towns including Nantucket, 30 miles out to sea.

We were too early for the first family, who are apparently going in August, but we did see Spike Lee at the pharmacy.

June Bride

The professional photographer was the fantastic Joyelle West. Can you STAND how gorgeous Alissa is? (Check the archives for June 2009 if you're reading this in the future.) That double strand of pearls was my Grandma Sophie's, by the way. And how about that photo of Eric dancing with G.G.? LOVE IT.

Photos below are copyright 2009 by Vermont's own BUZZ KUHNS!

Eliot (Or, Oversharing, As Usual)

Watching Oscar learn to roll over and sit up and eat food is reminding me of Charlie at the same age--which is about when I started this blog. So I looked back to the beginning and found the post where I introduced Charlie. I was a little surprised that I wrote that I wished Charlie "looked like a regular kid."

1. He is a regular kid. Duh.
2. Did I really wish that? Because I like Charlie exactly how he is. But I do remember obsessing about the way his skull looked crushed, and you can't really see that anymore now that he has hair.
3. Won't he be really bummed out when he's old enough to read all of this? Why am I telling the Internet this? Am I a terrible, terrible mother?

Something happened recently that made me question things I'd thought I was pretty solid with.

I watched a segment of the Today show about a young couple in Arkansas who found out the baby they were expecting had Trisomy-18. Doctors told them their baby would die in childbirth or soon after. So these first-time parents delivered the baby, a boy named Eliot, and then showered him with a lifetime of love for the 99 days that he survived. They had a birthday party for him every day with hats and a sign, and they went for walks in the park and gave him baths and all that normal stuff. They did not complain. At least, not to the Internet.

I walked around in a daze for two days after I read their blog. (Heather N. and other moms of new babies--don't click through. You're too recently post-partum to be able to bear it. TRUST ME.)

I had a very early morning talk with Jeff about God and souls and what it means to be a parent and the four little balls of cells that started inside me and did not make it. And Jeff demonstrated his awesomeness once again. He may never get around to putting up the blinds and curtain rods that have been sitting in their shipping boxes in the basement for months, but if you are having an existential crisis, he is the one to call. If I could bottle his calm, I would brush my teeth with it, dab it behind my ears, and stir it into my tea every morning.

So what I'd like to say here now is, I am not a terrible, terrible mother. I was honest, because I wanted to feel less alone, and to help other parents of kids with craniofacial birth defects to understand that everything they are feeling is OK--you are not alone either. All parents have moments when they wish they could have a do-over--have a kid who wasn't so loud, or so sensitive, or so much bigger than other kids, or so much smaller, or for God's SAKE when is Summer going to stop sucking her fingers? Because I'm not sure I can live with her for one more day. And we all have moments when we actually shake with gratitude for the kids we have. Like when one of my old summer camp friends posted pictures on Facebook of her eight-year-old daughter going off to our same old camp, and the concept stopped me in my tracks for the second time in a week (after Eliot) as I thought about sending Summer to sleepaway camp and realized that there is absolutely no way I could live without her for an entire month, not now, not ever, because my insides would curl up like a dead bug trapped between the window and the storm glass.

Eliot's parents now have a healthy little girl. But they will never forget Eliot. And neither will I.

Timberrrrrrrrrr!

Oscar can sit up. For a second or two.

The Best Thing to Happen to Motherhood Since Valium

Let's Panic.

Thank you Alice and Eden!

The Incomparable Mrs. Alissa

Alissa's wedding. Where to begin. I believe that someone should have a huge family wedding every year, because it is so so so SO much fun. It was four whole days of crazy fun partying and I'm sorry it's over!

Everything was gorgeous and I will post pics as soon as Buzz puts his up. My camera has gone to Canon but that doesn't matter, I would not have been snapping anyway as I was too busy constantly re-safety-pinning the spaghetti strap of my dress that burst off when Megan and I found her car keys that had been lost for like three days and I screamed and threw my arms up over my head. Not a good move in a bridesmaid dress.

The food was delicious. May I recommend Tastings caterers? The scallop appetizer, in particular, was to die. Oh, and the mushroom and leek strata thing. Which is funny, because Alissa loathes mushrooms.

It did not rain.

Alissa's bouquet of deep, dark purple cala lilies was stunning. As was Alissa herself. Her curly bridal hairdo did not stop her from helping Jeff, Jim, and Buzz push Megan's car out of the way before we found the keys. Nor was she phased when the minister did not show up on time. Nope. She just finished the chocolate bar she was eating in her white white white gown and then asked her high school locker buddy David to perform the ceremony instead. Which he did, and he was AMAZING.

Then Charlie burned up the dance floor with his red hot dance moves for five hours.

Best wishes to our happy couple, and welcome to the family Uncle Eric!

BAHA, Pronto. (I Mean Ponto.)

Charlie's audiologist sent me an email about the BAHA. She said three interesting things:

1. Her department recently had a meeting where they discussed the BAHA. "From what I've read and from recent discussions with my colleagues," she wrote, "the individuals who have unilateral hearing loss from birth/a young age and then get a Baha are less likely to find benefit from it than those who had normal hearing in both ears then later lost hearing in one ear and got a Baha. I found this information to be quite interesting and surprising." She added, "Of course each individual varies on how they will do with it, so as we have been doing, we'd need to see if it's something that Charlie would benefit from."

2. She told me there's a BAHA group, with a loaner BAHA--not the bone-conduction hearing aid that's rigged to be like a BAHA that we have been borrowing. She said an audiologist named Lynn would be happy to meet with me to discuss Charlie.

Internet: what do you think? Should my audiologist have told me about this group, oh, a LONG TIME AGO?

3. Finally she gave me the head's up that Oticon Medical, some fabulous people in Sweden (really, are there any other kind of people in Sweden?) are about to debut the next great leap forward in BAHAs. Here is the pdf brochure. It is awkwardly named "Ponto," and I keep wanting to call it Pronto or Pinto or Poncho or Pocahontas. I'll get past it.

"Being Intent on World Domination is a Phase That Everyone Goes Through."

For your morning coffee: some very useful advice on what to do if your child has super powers.

There Was a Little Girl

Wedding madness has ensued. Two days ago we were all getting our nails done. It took forever to choose colors. Maya and I had pedicures; Nosara and Summer got their fingernails painted too. "I still have to get my eyebrows done," I said. Nosara said, "What color will your eyebrows be?"

Right now we're all bunched into the office getting our hair done. One of the stylists told Summer she could have little plastic pearls incorporated into her hairdo. "Nosara, we can have pearls in our hair!" Summer cheerfully informed her cousin. Nosara said, "I already have curls!"

Step One: Extra-Ear-Canal-Ectomy

Saw Dr. Kenna today. She had copies of the reports from the surgeons we consulted. Either I never received these reports, or I was so wacko post-partum that I just don't remember them. Anyway it looks like the surgeons do want to do the extra-ear-canal-ectomy, but they want to make super duper schmooper (any Sid the Science Kid fans out there?) certain that they don't go near our favorite facial nerve, no. 7, which is already partially paralyzed.

Dr. Kenna said all the right things that made me feel like I am A., not Pushy Mommy for getting the BAHA in the first place, because hey, why not! and B., not Lazy Mommy for not wanting to fight with Chaz over the sweatband. So we take the summer off from the hearing aid, and see how things shake out with the surgery. It's cool, baby! The auditory neuroplasticity thing? That idea that we need to stimulate those parts of Charlie's brain otherwise they will be reassigned to other tasks? "No one really knows the answer," she said.

So I think we're OK for the moment. We're going to get a special hearing test for Charlie with the BAHA, and if it shows dramatic improvement in his hearing, that will help us decide what to do about the hearing aid. Meanwhile, I've got to figure out when we're going to do this surgery.