Cleft Stories

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!!

I really don’t know what she’s singing, or how she came up with that tune. All I know is I couldn’t keep it to myself. Sing it, baby, SING IT!

First of all, Happy New Year to all! I can’t believe it’s 2009 already.

I also wanted to thank everyone who commented and emailed me about my last post. I want to reassure you all that Emily is as joyful and sweet as ever – this issue of her not liking her lip in certain photos seems to be something just emerging and more troubling to me than to her.

This morning she woke me up very early (far too early on New Year’s Day) and we had some fun with one of her Christmas presents – a Pilgrim costume. Why did I buy her a Pilgrim costume? Well, Ana was learning about Thanksgiving at school and she asked for a Native American costume from Santa and she said, “but you have to get a Pilgrim costume for Emily.” So blame Santa, not me. The costume was very, er, historically accurate and also far too large (but, strangely, the waist was really small and bothered Emily). Still, we had some fun taking pictures which of course I want to share.

I believe she was going for “delightfully evil Pilgrim” with this shot. Kudos, Emily, very creepy.

Surprised Pilgrim?

I told her to look serious.

Pilgrim of joy!

I was going for a “sweet” one here, but it kind of looks like she was holding her breath. Shortly after this shot was taken, the Pilgrim costume was returned to the costume bin (likely never to be seen again).

She’s now dancing around the house wearing fairy wings, sunglasses and a princess skirt pulled up to her armpits – I will attempt to get pictures.

Thanks again to everyone who reads and comments on the blog, and sends me email and support. It’s an amazing comfort to know we’re not alone in our journey. I hope Emily will be updating her blog by herself one day!

The other day Emily was watching a movie of herself and turned to me and said she hated “that movie.” She told me to turn it off, which I did. Of course I was surprised, since she usually loves to watch movies of herself, so I asked her what was wrong. I knew the answer before she told me.

“I don’t like how my mouth looks.”

She then pointed to my face and said, “Why doesn’t my mouth look like yours? I want it to be like yours.”

And my heart just sunk deep into my chest. I hugged her and told her I loved her and that I thought her mouth was beautiful, but that it was different because of her cleft. She didn’t say anything else, but the next day she was looking at a picture of herself and it came out again. It was a large 8×10 picture that I’d just had taken and it was a close up of her face.

She punched the picture of herself – exactly in the spot where her scars were and said she hated that picture.

I love my child, and I love her face. Everyone who meets Emily adores her. But this problem is larger than me, larger than anyone who knows Emily. I wish I knew an adult with a cleft right now so they could tell me if there is anything I can say to help her love herself as much as we love her.

I’m sure it’s not helping that Emily is as girlie as they come. She adores Barbie. She loves princesses.

How can I convince her she’s gorgeous when she stares at that face all the time? How can any of us live up to that?

The faces in the media, on posters, on t.v., and in Children’s stories are perfect faces. And though none of us are perfect, kids like Emily have a lot more to deal with than I can possibly imagine.

That’s why I’ve decided to seek the help of a child therapist for Emily. I want to make sure that I do everything in my power to let her know that she doesn’t need to be perfect to be beautiful.

I tried to embed the movie of all of us dancing, but it didn’t work. You can make an elf of yourself at www.elfyourself.com. Good times!

I haven’t posted a video of Emily in a while. So here’s a treat. This is a song she learned for a solstice celebration at her school.

Here are the words:

Great big stars way up yonder
Great big stars way up yonder
Great big stars way up yonder
Oh my little soul’s gonna shine, shine
Oh my little soul’s gonna shine
Shine

I heard from Ella today that Joel is doing just fine after his surgery. She even sent some pictures and he is so cute. I wish I could post them, but I need to get permission. She and her husband are so happy – thanks for your prayers and best wishes. Ella, Joel and family – congratulations on this new start. I’m wishing you the best.