Cleft Stories

In November 2008 I received an email from Ella, a woman in Indonesia who’d recently had a baby with a unilateral cleft lip. We wrote back and forth for a while, and I sent her a box of stuff that included Soft Sipp bottles and Dynacleft tape, which unfortunately didn’t get to her until after her son’s surgery in January.

I hadn’t heard from her in a while and was getting worried, when the other day I got a package in the mail that contained some gifts from Indonesia and a lovely hand written note from Ella. She hasn’t had Internet access for a while, which is why I haven’t heard from her. She sent beautiful dresses for the girls from Indonesia, a hand painted sarong for me and some little toys for the girls. It was just amazing to receive this gift of friendship from a woman so far away. Ella will be publishing a booklet about feeding and caring for babies with cleft lip for the people in her community – this is quite amazing, since her culture does not readily accept children like her son and she had to hide his face prior to his lip repair.

Ella, I hope you can get to a computer and see this post! I plan on sending a thank you card, but who knows how long it will take to get there. Here are some pictures of Emily in the dress you sent – THANK YOU!!

Emily was more than happy to pose for this picture.

Looking demure…

Such a ham!

A few weeks ago I entered one of Emily’s drawings into an online art contest for kids. There was one grand prize winner who gets two tickets somewhere luxurious and 15 first place runners up – all of whom get free pajamas and lounge socks (apparently lounge socks are the product of cross-breeding socks and slippers).

Well she won!! Her artwork is featured in an online gallery on www.karenneuberger.com. It’ll only be up for a week or so – go check it out if you have a chance and buy some pajamas while you’re there (I haven’t tried the brand yet, but the reviews are fabulous).

And here’s a little gallery of my own. All of these, except the water color, were drawn when she was four.

The prize-winning picture.

Emily’s first water color painting (thanks Grandma Janne, for the art supplies)

A princess with dark skin (label by Emily)

A shape collage. The caption, by Emily, reads, “I made a house, trees, leaves falling from a tree and a tree with nothing on it.”

Rainbow princess

We took the girls to the park this weekend – it’s right on the Hudson River and there are lots of ancient-looking trees and big rocks. Emily thought one looked just like the rock from The Little Mermaid (her all-time favorite movie).

Hmmm, I wonder how many times she’s seen the movie?

(at this point I was trying really hard NOT to crack up)

Ana had a great time too. Here are a couple of shots of her on her own rock:

(Well, in all fairness, this is a tree not a rock but I love this shot of Ana)

Emily learned a new song in school today. I invite you to take a moment and enjoy…

I’ve just added a new addition to the NAM gallery – Caitlyn from Atlanta.

Check her out when you get a chance. Many thanks to mom, Cindy, for sharing pictures of Caitlyn with me. She’s a real cutie!

It’s birthday party season (or so it seems). Emily went to her third birthday party in a month – this time at a bowling ally. I was a bit skeptical about how a bunch of 4 and 5 year old girls were going to manage gigantic bowling balls, but apparently they have six pound balls, gutter guards and these chute thingies that little kids can use instead of trying to actually throw the ball down the lane.

It all added up to a ton of fun, but there was a moment that took me completely off guard. One of Emily’s friends was sitting next to me and she turned to me and said, “Why does Emily’s face look different then my face right here.” I watched in slow motion as she pointed to her upper lip, right below her nose.

It’s a question I’ve been dreading, but also looking forward to because it gives me the opportunity to explain Emily’s condition to her friends. Still, Emily’s friends are five..we were at a birthday party…and this girls’ poor, mortified mother was standing over her looking like she wished the floor would swallow her up.

I explained Emily was born with a cleft lip and had surgery to fix it. As I spoke, there was a running dialogue going on in my mind, which sounded something like this..

“Well, Ella, Emily has a cleft lip and she had to have surgery to fix it.”

VOICE IN MY HEAD: “Ella is five. She doesn’t know what the hell I’m talking about. Does she even know what surgery is. Oh lord, Ella’s poor mother looks horrified.”

“And the surgery caused her lip to scar, so she can’t really smile the way you can smile.”

VOICE IN MY HEAD: “Okay, now I’ve completely confused the child and, by the way, are the other kids talking about this? Is Emily uncomfortable? She’s eating her pizza, so maybe she doesn’t know what we’re saying…”

“When Emily was born we were sad that her lip looked different, but we really love her face even though it’s different.”

VOICE IN MY HEAD: “Oh god, this child is five! I’ve said too much. Her mother must think I’m a lunatic. Shut up now!”

And that’s how I handled that situation. Not very well. But I’m thinking that once Emily starts Kindergarten, I’ll speak with her teacher about coming in and teaching the kids about what a cleft lip is and what Emily has had to go through to get a face like theirs. The only thing I’m not sure about is how that will make Emily feel. She hates looking at pictures of herself before the repair.

Here’s a shot of her “bowling” using that chute thingy. She did get one strike. Woo Hoo Emily!

Nothing to say except…I love her face.

I haven’t said lately how grateful I am to NYU for the amazing outcome Emily had with NAM (nasoalveolar molding). She’s beautiful, and we’re so grateful.

Thank you to the team at NYU – I know you’re all still working hard and I’ll FOREVER be grateful.

Emily’s favorite book is Pinkalicious. Here she is dressed as Pinkalicious for her cousin Chloe’s birthday party. Actually, this may be my favorite book, not Emily’s. She’s a bit over it now.

See the resemblance?

We even found a pink crown.

All is well with Emily these days. She hasn’t said anything about not liking her lip and I never got around to calling a therapist. I’ll revisit that idea in the summer (when she makes her next visit to NYU).

She starts kindergarten in the fall. Amazing, huh?

More updates to come soon – promise!!