As many of you know my daughter was born with a cleft lip and palate. Its been a rollercoaster ride. This time last year i was about to start a new job and couldnt tell you hardly anything about Clefts. A year later and I feel like a pseudo-expert on the topic. I had made a couple posts in GD and got some good advice, so now I want to share back.

On Feb 4 she had the first surgery to repair her nose and lip. Shit is amazing what plastic surgeons can do. The level of technical expertise is mind blowing. Like even when she had the stitches in---the stitchwork was so fine-- it looked like a machine had sewn her up.

The hardest thing is actually weird....Im still not over missing her "old face" I had read articles like this: (http://parenting.blogs.nytimes.com/2014/03/09/the-cleft-lip-smile-i-never-knew-id-miss/?_r=0) about missing the cleft...and up until the surgery I was like whatever. But it was a shock to see her immediately after surgery looking so different. Man that cleft smile was so awesome and big.

Up next is palate surgery in june/july.

Its been a rollercoaster ride but if any of you ever have kids or friends who have kids with a facial difference and need advice, support hit me up.

here are the before and afters
http://imgur.com/8tfPh64
http://imgur.com/xBbfNex
http://imgur.com/LxzFcE3
http://imgur.com/XWkP3k4
http://i.imgur.com/WXJc8Tt (sideways)



Also this is a great blog post I wanna share with everyone:
http://themighty.com/2015/01/to-the-mom-or-dad-who-told-their-child-not-to-stare-at-mine/
(my favorite part)

Staring is rude. Pointing is rude. You know this. You’re embarrassed by your child because they’re pointing or staring. You shush your child and pull them away quickly, and I know you’re doing it to save my feelings, but my feelings are not so fragile and your action is doing real damage. You’re teaching your child to be afraid of what they don’t understand. I bet that most of you have a short conversation about diversity and not staring later; you’re good parents, after all. I would like to challenge you to have the conversation right there. Put a smile on.

Say hello. Introduce yourself and your child. I will introduce myself and my children. Your child will ask questions. Likely the same questions you would want to ask, but you feel rude highlighting the differences, even when they’re obvious.
Here’s the thing: kids categorize. They need your help — and maybe mine — to make sure Sarah gets into the right category. They ask questions to figure out how things fit in their world. When you don’t let them ask their “rude” questions, you confirm my daughter as “other.” Believe it or not, every kid I’ve met who was allowed to ask as many “rude” questions as they liked, learned in just minutes to see my daughter as I see her. She is just a kid.

She loves lollipops. She laughs at her granddad. She has favorite music. She’s going to school this year. Her favorite color changes all the time. Today it was green. She has a younger sister and an older sister. Her favorite TV show is “Veggie Tales.” She’s Daddy’s punkin and Mommy’s sweet pea. She will absolutely charm you with her wide, blue eyes.

Imagine what my daughter sees. A sweet little face unable to look away from her. Pointing. Then an adult pulls the child away, consciously avoiding looking at her. Now imagine this happening over and over again. She’s a bright little girl, and this is hurtful.

..the surgery simply removes the distraction from an obviously beautiful baby girl (those eyes will melt the coldest of hearts).

i'm proud of you & your wife for the strength & patience shown, as well as the concern. i'm sure this situation is never easy for parents, and i know it was initially a difficult subject to approach for you. still, you found the courage to eventually share your plight with others (including the okp community). that anonymous post actually led to a few more people hittin' up my inbox regarding their own personal stories & struggles. while i certainly encouraged an open dialogue (support, words of encouragement, advice, etc), i didn't want to impose or put pressure on anyone. i'm not sure if anyone actually reached out to you, but i want you to know your story is helping others facing with similar situations.

congrats on a successful surgery!

*edit:

that blog post is incredible. people are often intrigued and afraid of what they don't know/understand. awkward situations will happen in life. its important to recognize all perspectives involved and to work towards helping people move beyond their fears, allowing awkward situations to become learning experiences.




*skatin' the rings of saturn*


..and miles to go before i sleep...

Thanks man.

Like I said it was mostly a shock early on when you expect one thing and get another. Thats how life is. Thats how things were post-surgery.

A lot of people who had resources actually did inbox me. Iknow at the time tehre wasnt a lot of info/knowledge on it. So if it ever comes up again id love to be a resource.

..i'll certainly do my best to direct anyone with concerns in your direction.

*this post is guaranteed to be archived*

it truly does take a village.


*skatin' the rings of saturn*


..and miles to go before i sleep...

from that angle at ALL..
But it's so on point ....

touching post indeed.....so happy to read news like this on OKP....
.

http://themighty.com/2015/01/to-the-mom-or-dad-who-told-their-child-not-to-stare-at-mine/

it always amazes me how babies and young children are so resilient in situations like this.
also thank you for posting that blog entry. i had read it on Facebook and like FLUIDJ
prior to reading it i had never thought of it like that. it really touched me and definitely
changed my perspective on how i will treat situations like that with my child.

its all they know whatever situation they are in.


>it always amazes me how babies and young children are so
>resilient in situations like this.
>also thank you for posting that blog entry. i had read it on
>Facebook and like FLUIDJ
>prior to reading it i had never thought of it like that. it
>really touched me and definitely
>changed my perspective on how i will treat situations like
>that with my child.
>

Yea that blog entry was one of the most powerful things ive read. It actually inspired me to post pics on facebook.

Originally we had both made a conscious decision not to put pics up because were both educators who have so many former students and random ppl as friends. So all our real friends knew about it.

After I read that blog along with another incident a few weeks earlier when I went to a performance for my older son and some older kids were pointing/looking and staring--this hit home.

this or your other post, but i am so glad that everything worked out well, and pray continued blessings for you and yours.

that blog post was very thought provoking, also.


peace & blessings,

x.

www.twitter.com/poetx

=========================================
I'm an advocate for working smarter, not harder. If you just
focus on working hard you end up making someone else rich and
not having much to show for it. (c) mad

I can't imaging having to go through this as a parent. I have a friend who had preemie twins and his sons spent the first 4 months of their lives in the hospital fighting for their life.

Soul stirring thought for me and it took a lot of emotional energy to get through it but they did.

So as a fellow parent, I share in your joy with this and empathize with the emotional tug it must have placed on your family (and is still placing on them given the adjustment to her new look).

Either way, I'm happy for you all.

and a beautiful little girl before and now

Thanks for opening up about this and sharing its truly an education. That link to the cleft lip i never knew i'd miss was woah. I got it because in the few moments i saw her in the before pic i'm like shes adorable! and then the news that that face was about to change was oh but absolutely understandable. I got attached in such a small space of time so i cant imagine the nervousness and attachment after months.

Hows her older brother btw?


omg just saw the update with stitches removed
awwww still adorable
~~~~
When you are born, you cry, and the world rejoices. Live so that when you die, you rejoice, and the world cries.
~~~~
You cannot hate people for their own good.

hi five lil mama for us




does it really matter?

wonder what bin's doing?
http://i.imgur.com/phECCMp.jpg

before and after surgery!

This was a wonderful post and it absolutely touched me to my core...thank you for sharing!

Your daughter is beautiful and science is amazing.

______________________________
http://i.imgur.com/81XSukd.jpg

your little girl is beautiful! Is she having any difficulty with feedings? What kind of bottle worked best for her?

She started with the mead-johnson and then we alternated between that and a modified dr browns bottle that had a valve,

Post surgery shes using a special needs feeder.

i wish I had gotten a chance to do some clinical work in pediatric feeding and swallowing. I intend to do so later on. If you have any questions in the future about speech development, feel free to ask.

because I never really thought about the kids-staring issue from that perspective.
That will definitely stay with me forever.

And your daughter is so precious! I literally squeaked out an "awwww!"
I love big dark eyes on babies! And I'm so glad things are going well.

Being a parent is crazy, so high fives for dealing w an added layer of stress and worry. I have no idea what it would be like to send my baby boy into surgery. I take inspiration from the way kids handle that shit though.

My friends son is 5 and had to deal w a cleft palate. He's totally healthy these days and you wouldn't be able to tell really that he had surgery unless you know or look closely. Like you said the surgeons are goddam amazing.

can i ask in your research what causes a cleft palette?
is it somehow genetic or just a 1 in a million type thing?

>can i ask in your research what causes a cleft palette?
>is it somehow genetic or just a 1 in a million type thing?


Nobody we know in our family has a cleft so we guess its a random occurence.

There have been some studies that attribute it to lack of folic acid or certain medications, but none of them are conclusive.

We werent planning to get pregnant then so my wife wasnt really taking prenatal vitamins but her diet is generally good and she didnt use ay of the medications they blame for it.

Seriously if you know anyone with a similar situation send em my way