Cleft Stories

I can’t believe I haven’t posted since MAY! Emily has grown a lot this summer, as evidenced by the fact that none of her shoes fit her anymore. We took her to the dentist yesterday and she has one tiny cavity. Well, it’s not yet a cavity, it’s like a pre-cavity, cavity. The dentist called it a “pit” – so we have to get that filled, but I accidentally scheduled her appointment on 9/10 which is the same day as her next appointment at NYU. Oops.

I’m in the market for a new insurance provider (yet again). It seems like health insurance plans have gotten more expensive, but cover less stuff, than they did five years ago when Emily was in the midst of all her treatment and surgery. I’m looking at a plan by Blue Cross/Blue Shield which has out of network benefits but costs about $900 – $1400/month (it depends on whether or not I’ll include Em’s dad on the plan) and then we’d still have to meet like a 6K deductible for any out of network benefits. For us, NYU is out of network so that means we’ll be paying thousands before we see any reimbursement for anything at all, whether that’s orthodontia (which she’s due to start this year) or surgery (which will hopefully won’t happen until she’s closer to 9).

I guess this is the next part of our journey – insurance woes. As a self-employed person, I am really feeling the pain of poor health insurance coverage. Every single thing this family needs is an expense that comes out of pocket because we can only afford high deductible plans. I just got glasses (for example) for over $500. The girls both had dental checkups yesterday which cost close to $300 (we may get some of that back). It’s a real problem which I feel sort of powerless to fix.

(deep sigh) well, enough griping. Here are some recent pictures of Em from this summer. She’s getting so big!! They both are (another sigh)

Ana and Emily – one early June morning (2010)

Supergirl! (this was from a visit to my mom’s house in July – we’re at the Jersey shore)

The girls at the beach (from that same NJ visit in July)

Mmmmm! Emily’s favorite food. This is from a 4th of July event on, er, the 4th of July!

Emily at the edge of the Big Deep (in August) – a wonderful swimming hole in Woodstock, NY

Emily, Kennedy, Ana and Sydney – from our visit to DC at the end of July. Sydney was also born with a cleft and that’s how we met!

I have so many more photos from the summer and I hope to get on in a week or so and post a few more. Soon I’ll be posting photos of my very own first and fourth graders! Time does fly…

Last Tuesday we had the pleasure of attending The Smiley Faces Foundation’s premiere event at the Red Bull Space in Soho.

The event was a photography exhibit showcasing photos of children born with cleft lip and palate who are followed by NYU’s cleft team at the Institute of Reconstructive Plastic Surgery. Twenty children, Emily included, were featured in this exhibit by photographers that included famous names such as Peter Lindburgh and Nigel Barker. Emily’s photo was taken by Phillip Graybill, an extremely talented young photographer who literally took the most beautiful photo of my child I’ve ever seen.

You see? (Photo by Phillip Graybill)

So maybe you found Emily’s site because you’re searching for answers about what it means to have a child with a cleft lip. Maybe you want to see some before/after pictures. Maybe you’re trying to figure out what to expect (if you’re pregnant) when the baby is born. Maybe you just want to see for yourself that your child can survive and thrive even though he or she isn’t perfect.

Seven years ago I was you. I was scared and I couldn’t imagine how Emily was going to change my life. Would things ever go back to normal?

Then I found my daughter’s cleft team at NYU’s Institute of Reconstructive Plastic Surgery and everything changed. I was still sad for my baby, and scared about what to expect, but suddenly I wasn’t alone.

And neither are you.

There’s a whole community of parents and children out there who are going through or have gone through the same things you’re going through.

The Smiley Faces Foundation happened because one parent, Adam Bell, wanted to make a difference and he happened to be in an industry that gets a lot of press attention.

This blog happened because I wanted a place to chronicle Emily’s journey towards wholeness. But it became a way for me to connect with so many other families out there. It was my lifeline when things got really hard – and I expect it will be again when the time comes for Emily’s next surgery.

There are a lot of us out here, blogging into the void and hoping someone finds us. Grab a cup of tea, sit back, and read all about Rachel or Reid or Jaron or Kaden or Adalyn or…so many more.

You see? You’re not alone. I know you’re scared, but I can tell you that there’s a large extended network of families out here that are ready to talk you through this and show you that everything will be alright. I promise. Beauty isn’t one thing and isn’t everything, but sometimes it takes us by surprise.

Thanks to Dr. Cutting, Dr. Grayson, Shelley, Margie, Dr. Carter and the entire team at NYU who helped make Emily beautiful, and thanks to Phillip, for enabling the rest of the world see what we see. Our little mermaid.

(photo by Phillip Graybill)

(photo by Phillip Graybill)

Thanks, also, to Adam Bell – for making this happen and for creating The Smiley Faces Foundation.

Yep, she’s six now.

Where to begin? Well, we had her birthday party at her gymnastics center and all the kids said it was “awesome.” Emily adores being the center of attention, so this whole birthday party thing really worked out well for her.

Here she is holding up her first gift (a BlaBla doll from grandma and grandpa). She got this a few hours before her party and it was a big hit. Never heard of blabla dolls? Oh my, you are not up with the latest trends in knit toys!

Action shot – that’s Emily on a ginormous inflatable slide.

And here she is in the jumpy house…

Here are two of her little friends climbing for their favors (that’s right, we made them climb for their favors).

Here she is rocking some plastic gem excavation glasses that came with one of her gifts (the party was “gem” themed).

Stretching…

Present time!

Emily had a blast and, as for me, I’m still in shock that my baby just turned six. I mean, where did the time go. That means this blog turned six as well since I started blogging when I was about 8 months pregnant with Emily. I can’t even believe it. I think a photo montage of Emily through the years is in order over here. I’ll get right on that, I promise!

(BIG SIGH). Well, it’s spring again and you know what that means. Emily has a birthday coming up. She’ll be six. SIX!!! Where do the years go?

look at her! That is the face of a future first grader!

All of Emily’s little friends are turning six too. In fact, it’s a bit of a birthday party extravaganza here in the rolling hills of upstate New York. A couple of days ago we went to a party which featured lots of fun reptiles as the main attraction.

Oh gosh. I know. Any excuse to show a picture of my child with an albino python wrapped around her shoulders…

Emily’s party is going to be at the gymnastics place she just started going to a few weeks ago and loves. I am very happy about not have 14 kindergartners run screaming through my house for 2 hours straight. However, the yellow python will be making an appearance at Ana’s 9th birthday party in May (woo hoo!)

Let me end with this…

More news later – this post was an unofficial excuse to show off some very cute pictures.

Okay, so I’ve been really bad about updating the site – now that it’s FEBRUARY! First of all, I want to let anyone who visits regularly know that we haven’t dropped off the face of the planet, I’ve just been busy getting some other blogs started (unrelated to clefts). I also have a terrible spam problem with this blog and so if you’ve posted comments and I haven’t responded or approved them, that’s why. I just deleted over 16,000 comments, most of them were junk. I’m sorry if I deleted yours! I’m going to come in at least once a week to check the comments from now on, but if you really need to reach me, please email me at jackie@jacquelinedooley.com!

Now for some updates on Emily.

First of all, she’s wonderful. She loves kindergarten and has many friends. She’s still happy and goofy and, as it turns out, she has a huge stubborn streak (her older sister has experienced it more than once lately).

She’s growing very tall lately too. I imagine many of my blogging buddies are seeing the same tremendous growth spurt and I PROMISE to visit all of your blogs over the next couple of weeks and leave comments. I really miss talking with other parents about our kids’ unique issues. Like, is anyone else fielding lots of “why was I born with a cleft?” types of questions from their child? Emily has been asking this a lot. I just don’t have a good answer for her.

We have a very exciting event coming up next week. Emily is going to be photographed by a professional photographer for a fundraising event for NYU! The event is being organized by the Smiley Faces Foundation

In all honesty, I don’t know much about the event except there will be many photographs of children with clefts being displayed at a big gala in the city in April. Emily turns six in April so I think that’s very appropriate! The Smiley Faces Foundation is a new foundation formed by Adam Bell and its mission is to raise money (and awareness) for NYU’s Institute of Reconstructive Plastic Surgery. Of course, we would do anything we can do to help with this cause!

Okay, I’ll end with a few recent pictures of Emily and her big sister from the last month or so.

Okay, so not one of Em’s better pictures (her lips are red and chapped), but a great shot of how she looks now in terms of her repair. This is from just a week or so ago.

Emily and Ana out in the snow after our “big” snowstorm on Wednesday.

A picture from the same day. Why is her hair wet, you ask?

That’s right. Score one for Ana. How did Ana react, you ask?

Yep. (Emily was fine)

She even got her sister back!

Wow, I guess I’ve been M.I.A. on this blog for a long time. I can’t believe I haven’t posted since the Forward Face Walk. Thanks to all who sponsored us! Unfortunately, we didn’t get to do the actual walk because the weather was horrible that weekend (Nor’Easter). The funds of course still go to Forward Face and to a very worthy charity.

We’ve been enjoying the holidays over the last few weeks. Here’s a snapshot of my cuties on Christmas Morning:

They’re gorgeous, aren’t they? They had such a great time digging into the gifts. They even hugged, which is a rarity..

See? Here’s proof!

I’ll leave you with one final shot of Emily – holding one of her favorite gifts. A ceramic mermaid for her room. I pray it doesn’t break!!

Happy Holidays to everyone! My resolution for 2010 is to write more – including updating this blog.

I can’t believe she’s five. Really, there are no words.

Here she is with last year’s backpack. It’s about as big as she is (still)

This shot cracks me up. Look at her little legs in those bright leggings! She was very adamant about wearing them on the first day of school.

All ready to go!

Sisters in matching sweaters – and a good first day of school was had by all!

There is no purpose for this post. It’s Monday, and I’m avoiding work..

It’s so very hot which is actually kind of a relief because here in the northeast it’s been unusually cold all summer (a moment of silence, please, for our poor, long-suffering garden).

It’s getting hot enough that the park is no fun…unless you can actually go swimming in a river which runs right past the park (for $1.00 per kid – a bargain even though the water is green and smells like an old wetsuit).

This is a smile of triumph because Ana managed to talk me into letting her go swimming in swamp-central

Emily searches for rocks at the bottom of the river

Emily’s “spontaneous” pose which seems to occur whenever she notices I’m taking pictures

They’re racing

It’s me! See, I DO exist. And so does the humidity, as you can see by my hair…