The beauty in our differences

As Cadence is getting older she's having more "new" friends over to our house. Most have only known Cadence for a few months or a year. Almost none of them know that she has a cleft lip/palate. If they ask why her nose is flat on one side or that it looks like she's missing teeth even though she hasn't lost any yet, she'll easily tell them that she it's because of her cleft palate. Of course, I don't think that any of them know what that means. But they got an answer and off they run to the playground.  Until they come to our house.

We have Cadence's referral picture in a frame. The picture that introduced me to my third child. The picture that I stared at endlessly, getting lost in her eyes, wondering if she was being loved and taken care of. Worrying about how she would transition into our family. Wondering if our love would be enough to help get her through whatever has happened to her before she was placed in our arms.

Another one of my favorite pictures that we have out is the first professional ones of my three girls. I swear my heart grows every time I look at the pure joy on their faces! Cadence's big, beautiful cleft smile... I fell in love with it because it was her. I even had a hard time when she had her lip repaired. I missed her cleft smile desperately.

When I look at those pictures now I don't see her cleft lip. I just see her. However, when new friends see the pictures, the cleft is all that they see. It does look dramatic. Most kids have never seen a child with an unrepaired cleft. And I think it can be hard to relate that to the crazy, giggly girl that they know.  Most of them ask questions about it, understandably. Some are a little confused, some listen and move on. A few have said things that can hurt if Cadence is really paying attention. "I'm sure am glad I wasn't born with a cleft" and "That is soooo weird". I don't fault them. They are young kids. I'm sure my kids have said inappropriate things in similar situations.

I know from our six months that Cadence was first home with her unrepaired lip the reactions that happen in stores and on the street. We're standing in the grocery line and Adult makes every effort not to look at Child with cleft. Kid can't stop staring at Child with cleft. Adult grabs staring Kid and whispers "Stop staring" and tries to hustle them away from Child with cleft so they can't see. Back then, I made every effort to reach out to that family though. To explain to kids that this a cleft lip, it's how Cadence was born, just like staring Kid was born with brown hair/freckles/blue eyes. Yes, it looks different and because it makes it hard for her to talk a doctor will fix it one day and her lip will look like most kids. I wanted to use the moment to teach them that it's okay to look and ask questions (hopefully politely) but mostly I wanted them to know that she is a kid just like they are... just one that looks different. Because all of us are different and that's what makes the world kind of awesome! There is beauty in our differences and they don't have to be ignored, just respected.

Cadence is a pretty self assured little girl but I worry that as she gets older about comments that she hears might not roll off her back like they do now. For now I'll try to help my kids see the beauty in everyone's differences as well as the things that makes each of them different from every other person in their class or on the street. Hopefully they will carry that with them where ever they go and with whomever they encounter.

She can suck!!

Cadence can finally suck!!  I think that everyone in the restaurant knows that now considering how we all celebrated!  We started using juice boxes and Capri Sun drinks a few months ago and when she would make a seal with her lips around the straw I'd give it a little squeeze (like a reward).  She quickly caught on that with much insistence she could hold it herself and just squeeze the drink in, but we continued to work with it once a week or so.  She always wants to drink whatever I or the girls have and gets so frustrated when it has a straw and she doesn't get anything.

I was giving her water the usual way (placing my finger over the top of the straw, trapping water, and letting it pour into her mouth) when she insisted that I put the lid and straw on the cup.  Then I suddenly saw water in the straw and get all the way to her mouth!  The girls and I hooped and hollered!  We are so excited to reach this milestone.  Now, on to talking, girlfriend!



Before and after

This is my girl.... goofy as they get! I think her motto must be "If I made you laugh my job is done!" She truly gets joy from cracking herself and others up. This was the activity that brought down her wall in China and continues to warm our hearts to this day!

On another note, particularly of interest to parents of children with cleft palates is her "before" and "after" picture below. Cadence had a VERY significant cleft palate. As kids grow, if they aren't repaired, their cleft continues to grow. She got along pretty well despite it all. She never had any issues eating or drinking and obviously was growing well when we met her. Obviously her speech isn't where it should be, but there's a few factors behind that. Her cleft palate extended through her gumline and you could see up to the top of one of her nares. Quite interesting to look at with one of her many belly laughs!







BEFORE








You can get a general idea of how things looked pre-op....















AFTER

















And here's a good look now. She's had one surgery in November for her cleft palate and one in January for her cleft lip. She does have a small fistula (hole) just behind the gumline that the doctor constructed. It's about the size of an eraser and we haven't met with him yet to see if we will do anything about it before her hard palate repair when she's older. It doesn't seem to cause her any problems so far.

Just wanted to share this with someone who might be standing in our shoes 6 months ago. It's always nice to see what the outcome will be!

Two weeks post-op

Cadence has got her groove back! Two weeks post-op for her cleft lip repair and she is her usual ornery, happy, silly little self! Albeit with a much smaller smile, but it's beautiful and we are happy to be done with surgeries for a few years. Honestly, I had a really difficult time with the whole transition. She just didn't look like herself. Everyone kept saying how great her lip looked and what a good job the surgeon had done... logically I knew this to be true. But where was the little girl that I met in China just 4 months ago? Understandably her personality was a little "off" too. She was uncomfortable, her lip hurt, and I'm sure she was wondering "What happened to my mouth and why does it feel funny?". I think this, along with the physical change, just shook me up a little and made it feel like we were meeting all over again. In the midst of my feelings of guilt about the way I was processing it all I talked to another mom whose son had surgery for his cleft lip after he got home from China. I was so relieved to know that I wasn't alone or a terrible mom for having to adjust to the newness. I am so happy to have Cadence back to her usual self and smiling her "new" beautiful smile!

Surgery #2

My girl loves to smile! Big, cheesy, wide-open, "hey, you gotta smile back at me" kinda grins! Yes, it's bigger than usual due to her cleft, but beyond that, she puts her heart and soul into her smile. I believe one of Cadence's top priorities is to make people laugh... and she succeeds! People have said "She'll be beautiful when she gets her lip fixed". Yes, they have actually said this - to me! Regardless of the complete ignorance and rudeness of this statement I do realize that there are general "norms" that society considers "beautiful". Typically having a two centimeter gap in your lip doesn't fall in this category. But dang it, Cadence is beautiful!! Her eyes, her heart, her laugh, and her smile!



The day finally came to have her cleft lip repaired. I was nervous because surgery will always make a parent nervous. However, I was more nervous about the change to take place. Before I had children I remember a co-worker telling me that she grieved when her child had his cleft lip repaired. It seemed strange to me because of course he looked "cuter" once it was done, right? I get it now. Since the day I saw Cadence's picture in April I have loved everything about her. Now, one of her biggest, most shining characteristics was going to change. It would be an adjustment.

Cadence giving her cheesiest smile pre-op!

Below: When she's anxious she sucks on her blanket... soon that will be a little harder for her.

Gettin' goofy after some versed!

The surgery went great and the doctor was happy. He placed stents in her nose that will come out next week when he takes her stitches out. Surgery took about 3 hours and we were very excited to be able to go home the same day (it pays to have two nurses in the house!). It was shocking to see her. Her mouth is so tiny! I know there is swelling and that will subside and with time things will stretch, etc. Wow! What a difference! When we were driving home she looked so relaxed so I got my camera to take her picture. Without missing a beat, she cheesed it up! She wrinkled her nose and squinted her eyes. Her poor mouth didn't move at all, but I could still see her beautiful smile in there! Despite all of the obstacles this girl has gone through in her short life, joy is in her soul!