The Cleft Chronicles

This is a blog dedicated to fostering a safe, informative, and encouraging community among those who have any variation of a cleft lip and/or palate. 

[thecleftchronicles]

Hello, I would like to know, if I have the right to love, or that they love me, or if I am a monster, I have a cleft lip

Hello, friend! First of all, I am so deeply sorry that someone has made you feel this way. No one deserves that.

Every human being has a right to love and be loved. That is an indisputable right. I know it can be hard to crawl out of a headspace where you’ve been taught to feel unlovable but it is just inherently untrue.

Just for the sake of proof, I know MANY people with cleft lips, palates, both, and other things that are in happy and fulfilling relationships with people who adore them.

Self love is a marathon, not a sprint. I would encourage you to start with neutrality and work your way to love. You are a person who deserves love and the love you have to give is precious because you are a person. Full stop. Your body keeps your alive and takes care of you.

We all have our own issues to work through and the society we live in capitalizes on our hatred for ourselves. It’s hard work but you’re worth it.

If you have the recourses, I would encourage you to seek out therapy. Having someone outside of yourself to guide you as you learn and grow is super helpful. I wish you all the best 💖

[thecleftchronicles]

Hey I’ve just been reading everyone’s stories very inspiring. I also have a cleft lip and palate and I’m dealing with a lot of insecurities I never dealt with in my childhood that are popping up in my adult life. I’ve never had a problem making friends or being good at things I like to do but I always just pushed the cleft lip thing under the rug and hid my insecurities, tried to over compensate due to my defect. How have you guys been able to cope with the pain knowone else in your life can see

Anyone wanna jump in and share some experiences with Anon?

I have always been very open about mine and was blessed with a great support network of people who knew and sympathized. I find that talking and sharing helps me cope with things because it helps me process and allows people to know what I’m going through and either share similar experiences or just commiserate with me!

[thecleftchronicles]

I’ve had this on my mind for a while. I’m almost 21 and haven’t had the major jaw surgery yet where they essentially just pull it forward and to be honest, I don’t really want to? It took a long time for me to be confident and now that I’m there I don’t really want to mess that up. I don’t want to look different because everyone has known me the way I am for this long. I still want to get a retainer to fix my upper teeth but i don’t know how to tell my surgeon that I don’t want the surgery

Hey! There’s nothing wrong with that! It’s your body and these surgeries are meant to improve your quality of life. If you don’t think it will do that, then you don’t have to have it! I encourage you to really think about it, because if you’re under Children’s Rehabilitation Services, covering the surgery under insurance will be a lot more difficult after you turn 21.

But, like all major surgeries, jaw surgery is tough. I reached a point in recovery where I was just sobbing because what if I went through all this pain and suffering and I didn’t like that way it looked? If you’re happy with the way you look and you don’t have any functional issues, you should feel completely within your rights to say no to the surgery!

I’m so proud of you for being so confident and full of self love. Your surgeon will more than likely be just as happy for you that you don’t feel the need for the surgery. It is ultimately YOUR choice. And you can always come back if you change your mind!

[mundanemess]

Got those Birth Defect Blues

I hate this. I feel like every time there’s a school break I become confident in the way I look, because I have more time to be influenced by my role models- whom I choose carefully. Like I start to believe that I’m capable and that i’m beautiful the way I am, and then school comes back and ruins it all. I get stuck in that crowded corridor, bumping into normal looking people who make me feel like shit. 

I have’t even gotten my first job yet because of my defect. Tbh i’m more than qualified to get a job at a fast food place, or bookstore, but i’m so fucking terrified of being at the counter and I just have this constant fear of customers saying that I ‘put them off’ or ‘ruined their day’. How horrible is that? And I know that I don’t have to necessarily work at a counter, but I am so scared of being rejected by employers in the first place. Like i’m not even worthy to have a job. I’m so. Tired. 

Sorry if this brought you down, but you know, one thing that keeps me going is that in the back of my mind I know i’m not alone, people have made it through, and have achieved so much despite having a birth defect. Here’s to the ever inconsistent levels of self-confidence. 

[thecleftchronicles]

I think a lot of people can relate to this kind of feeling. That kind of fear and hopelessness can come with the territory but you’re not alone and you don’t have to stay there in those feelings. It’s cheesy and oversaid, but it does get better.

If anyone has any similar experiences or words of encouragement please feel free to share!

[thecleftchronicles]

It’s interesting to find a blog like this because I have never met another person born with a cleft lip/palate. It’s crazy to think this condition affects 1 in every 700 babies that are born, but after 24 years and living in 2 different states I have still never met another person like me. I have just been thinking a lot lately and I want to help. I want to not only help, but be realistic and to help people who have to go through or have already went through what I have.

The struggle to get here where I am is no joke. I still look in the mirror every other day and see all these imperfections I just wish I had the money to fix right now. After all that I have been through (about 10 surgeries) it’s obsurd to feel like it isn’t enough. Mainstream media, fitness people, actors, models, ect. already put enough pressure on normal people to have to do all these things to look like them. That is no problem though… Anyone can work out, change a hairstyle, or a clothing style and easily be accepted. How does one go about changing something that is impossible to change without surgery? No matter what I do to my body, I can never change the face I was born with. A face isn’t even the problem. What gets worse is that bone structure becomes the problem. The only way to satisfy my wants are through plastic surgery by breaking bones and aligning them correctly, shaving down bones that are too big, and/or facial injections/fat removal to even out the geometry of my facial structure.

The craziest part about having to go through this is that my whole life I had never shed a single tear until I was about 18. I was such a trooper. I was 11 years old in 6th grade and I remember just thinking I can’t wait until I’m 21 because I knew it would take around 10 years for me to be somewhat satisfied with how I look. It was the future alone that got me where I am. Looking forward in excitement to when I would be able to love myself and how I looked became my willpower. But now here I am 13 years later and it’s still not enough. I have been told by family my entire life that I was the strongest person they had ever known because I went through 8+ surgeries, I never cried once, never complained, I was always really quiet and reserved and just knew what had to get done. Even the pain wasn’t enough to get me crying.

When I was about 18 I realized the type of person I was emotionally. I’m what is called an Introvert. For those of you who don’t know what it is, an introvert is someone who doesn’t need anyone to be happy. I can be alone and in my own head and always find a way to entertain myself or indulge myself in a little happiness. Because I am so introverted I went 15 years of bottling up feelings and never shedding a tear about how I was born. I always knew I was being looked at weird, made fun of, shamed, and I felt that I would never get a girlfriend. Even when I got my first girlfriend I was so used to bottling up my feelings that I have never told her about my birth defect until after we broke up. Even today I don’t tell people about it unless they ask me and I’m really shy and try to be secretive about it. I don’t know why, but I’m almost embarrassed of my past.

Here is how I want to help people: My whole life everyone had always been so positive and treated me special. I don’t want to be special and I never did. I never wanted to be looked at. I always wanted to be the cool kid in the back of the classroom that nobody looks at because he has no problems. Looking back at it, I almost feel insulted many times by people trying to treat me special. I just wanted to be a nobody that was so normal that people wouldn’t look at me. Many of you may not have been born like me but have kids that are. Trust me when I say this, but your kid might go through similar thought patterns as I did. The thing is too that I never once told my parents any of this stuff. They think I have always been happy and never depressed. They have no clue that at one point I wished I were dead because I was just a master at hiding my feelings. I always wanted to come off as really happy and funny to everyone so they would hold off casting judgment. I always had negative thoughts about my situation, but denied the negativity my whole life until I was 18 and my adult brain could no longer live the lie I charaded in my brain.

HEED MY ADVICE:

If you have a child born with this condition, treat them the exact same as you would treat a child without the condition. I didn’t want to be special. I was insulted by everyone looking down on me and felt pathetic. Because everyone used positivity to push me forward I became an introvert and hid away all my feelings from everyone.

Here is a perfect analogy. Let’s say for example there is 1 normal person and 1 autistic person. Do you think the autistic person would be offended if the normal person talked to the autistic person with an autistic accent? Or do you think that the autistic person just wants to be talked to in a normal voice? Singling someone out and acting like they are special is wrong. It seems like the right thing to do from a parent’s standpoint but trust me it isn’t. If you want your cleft lip/palate baby to live a normal life then treat them like a normal kid. Don’t make them out to be the special one because they just want to be normal and not special.

Sorry for the huge wall of text but this is some serious stuff right here. These are my secrets. This is my curse. Because i’m hiding behind a phone screen, I have the courage to say or do anything, but trust me these are hard things to admit. I just want someone to know that this perspective exists and I guarantee I can’t be the only one who has gone through these thought patterns. I didn’t post this to get a pity party either, I just want to help and I know other people like me have thought this same stuff before.

I’m not sure how Tumblr works, but if anyone has any questions or anything for me please send me an email at [email protected]. If anyone is going through depression or is in a constant battle with their own mind and their own happiness, please reach out to me I would just love to reassure others and do my best to help them out. Trust me no matter how bad I think I look, there will always be someone out there who looks past a little scar or a crooked nose and sees the beauty not just on the inside but on the outside too.

[thecleftchronicles]

Hi all! I'm a bilateral adult cleftie going to get my deviated septum fixed. I had a rhinoplasty when I was 16 and reconstructive work before that, & I noticed that the tip of my nose has a ton of cartilage in it. (It's "hard" or "pulpy" when I squeeze it.) Does anyone else have this/know why this might be? Thanks, and as always, TY Brodie for being awesome!

Hello, friend! Our situations are very similar but I too don’t have a ton of info so I don’t know how much help I’ll be beyond solidarity!

I’m having my deviated septum fixed in May (my last rhinoplasty was when I was.....18? It was early college. I’m 22 now and graduated wow.) Did you have any cartilage grafts during your rhinoplasty? Because I did (from my ears) and I had a consultation (after letting things heal and settle for like 3 years) recently where my plastic surgeon said that the graft will always feel hard and not move in the same way the rest of your nose will. 

My surgeon spent a lot of time poking around at the lump of grafted cartilage and pointed out how hard it is but that wasn’t a concern, just a thing that is. It would only affect me if I wanted the tip of my nose reshaped (which I don’t). He said that he wouldn’t touch it if I wanted any reshaping done while he was in there because the cartilage is fragile and may actually break if he messed with it. So. Don’t want my nose to crumble. So we’re not touching that.

Scar tissue and grafted cartilage are finicky beasts and often don’t want to move or act like normal body parts, in my experience. If you’re getting your deviated septum fixed, I imagine you’ve had a consultation with your doctor or will be having one soon so I would ask them about it! 

It’s more than likely just scar tissue or something but I would ask your doc about it if it’s bothering you! Best of luck to you with your rhinoplasty!!

[thecleftchronicles]

I'm turning 20 next week and I have never had my four front teeth (I've been using a retainer with teeth attached since I was 9) but yesterday I completed my implants meaning I finally have non removable teeth and I just wanted to share this with someone. To anyone who still has years of surgeries left, it does get better and it's all very much worth it. To be confident when I smile is something I never thought I would feel and I cannot describe how happy I am and I just wanted to share this

That’s so wonderful! Thank you for sharing :) I’m so happy for you!

[thecleftchronicles]

For the former anon; After one my surgeries my nose kind of collapsed? Anyway I could barely breathe through it, so when I was 18 I asked if it could be fixed and if I should wait until the rhinoplasty. My doctor looked at it and he didn't see the need for a complete rhinoplasty. So they actually just opened up my nostrils a little, made the left nasal membrane smaller, and made the nasal wall a little straighter. But anything to do with nose reconstructing is called rhinoplasty actually!

Thanks!!

[thecleftchronicles]

Hi! I was just wondering if anyone has had a surgery to lift the nostril without having to have a rhinoplasty? Also, has anyone had their nostril made bigger?

Hey! I’m pretty sure that anything for my nose has been a rhinoplasty but I did have a tissue/cartilage graft that made my nostrils more even. Though I think we did that along with a rhinoplasty.

Anyone else? 

[thecleftchronicles]

To the anon nervous of going back to school/getting questions! Normally I don't mind explaining (very quickly) to people I like what's happened. But when people i don't know/don't like/not friends with ask me about it I try as politely as possible to just say "sorry I'd rather not talk about it" and then have another quick subject to bring up so there's not an awkward pause.

This is great advice. I’m really terrible about the ‘sorry I’d rather not talk about it’ part and it’s super important to remember that you don’t owe anyone an explanation. If talking about it makes you feel understood and validated, do it! But don’t feel obligated.

Thanks for the advice, friend!

[thecleftchronicles]

It's been a week since my septorhinoplasty,and in a few more i'm going to have to go back to school.I'm least looking forward to telling my story to those who ask questions repetitively.I know they just want to make me uncomfortable, so why should I try to explain something so close to home, to those who won't understand? Is there a simple way to explain the birth defect so i can get people off my back,while still feel like I've justified myself?It feels like i've been forced to share my secrets

That’s a super tough line to navigate, friend. Feeling like you’re forced to reveal something about yourself puts you in such a vulnerable position.

I’m not sure I’m the best person to give you advice on this because I’ve been telling anyone and everyone about my cleft since I could understand what it was. It was never a secret for me and when I got older, it even became empowering. I get to control what people know and how they know about it. If I tell them about my cleft and give them the facts, then I control something about that encounter. I get to shape how they think of my ‘defect.’

I’ve just always found being knowledgeable and blunt about it works just fine. Usually no one asked but if they did I’d just say something like: “Oh, I’m still recovering from a surgery. I’ve got a cleft lip and palate -- do you know what that is?’ and then give a rough explanation if they don’t, and just talk about my experience if they did. 

The way I usually explain it to people that don’t know is something like: ‘It’s a birth defect where the roof of my mouth and my nose and lip didn’t form all the way when I was born. I’m X number of surgeries in now but thing are going pretty well. This surgery was to ...’ aaaand I either launch into a story about this particular surgery or tell some cool story about my doctors or everyone loves a good medical drama and I’ve got lots of those. I don’t know. I just turn it into an interest point of things weird and sometimes awful things happen to me but I get to define how that story is told. People generally like to hear unusual stories and everyone like to play the ‘who’s had the weirdest injury/accident’ game and I pretty much always win with surgery stories. 

I can’t speak for your experiences but I’ve only found a very very small portion of people want me to be uncomfortable. Most of the time, they’re curious with no tact and ask things in offensive or hurtful ways. People do tend to be entitled to your story and your pain and you don’t always have to answer. But if you want to feel justified or just explain yourself, I always find that people either lose interest or offer sympathy, or even want to hear more about your story as a person.

Rehearsing how you’d quickly inform someone of what a cleft is and what you’re experiencing right now can be helpful so it doesn’t catch you off guard. There’s nothing worse than fumbling through telling someone something super intimate like this. 

Hope something in here helped and that your recovery is going smoothly <3

[thecleftchronicles]

I'm in my first relationship and it's been going pretty well for about 8 months now but I feel like I'm running into problems talking about my cleft. I thought I was supposed to feel totally connected and safe talking about things with my girlfriend, but I don't really feel like she understands. I feel really lonely and I don't know how to make her try to understand what it's been like for me. Any advice?

Hey friend! 

I’ve never been in a romantic relationship but I have been in loads of other kinds of relationships so I’ll give you the best advice I can and then other people can chime in with their advice too, yeah?

In all reality she won’t ever understand. My mother, who was by my side through everything, and my best friend who has heard every ache of my heart in relation to my cleft, will never understand. And I say that with all the love and appreciation in the world. They don’t have a cleft, they didn’t go through it, they don’t have the same experiences so they won’t understand.

What you’re looking for, I think, is listening and empathy. Being an empathetic listener is really hard for anyone, but when you’re listening to someone talk about their cleft related experiences, it can be hard. People tend to want to blow it off, make it better, or ignore it. It is really hard to grapple with the pain of someone you love in a way that is helpful.

Feeling lonely in a relationship is never a good sign. I think communicating a little differently might help. I’m always in favor of more and better communication, I feel like we’re not taught to do it well. I would start by talking with her about how this is something really integral to who you are and you want her to understand. Tell her that you have been feeling lonely and disconnected and you want to find a way to connect her to this part of you. Don’t attack or accuse, but ‘I’m feeling ___’ statements are a great way to start.

I can’t speak for your relationship, but when I’ve expressed to people in my life that I’m not feeling understood or that I need to talk through something, it’s engaged them to be more empathetic listeners and ask me what I need from them to feel better. It’s all in the communication, my friend.

I hope that helps some and that people add on more experienced romantic relationship advice.

Best wishes!

Brodie

[thecleftchronicles]

You're blog is an inspiration to us all. This is a thank you.

I don’t know where to put this, as I’ve never really used tumblr before, because I always kind of assumed it was for wasting your time looking at gifs and memes and whatever (I mean use facebook and instagram and reddit so it’s not like I don’t already waste my time enough, sadly). Regardless, I was just scrolling through the internet looking at pictures of people with cleft lips (I was born with bilateral and palate) and I’m so happy I came across this blog. I have been lucky enough to have had great surgeons and great confidence throughout my life, but even still I know how it feels to just look at yourself and think there’s something wrong. Not to mention the fact that there are still people who feel the need to point out your (and my) perceived ‘flaws’ (not the kind of people who are genuinely curious and super polite about asking, but the people who are like, “DAMN YOU LOOK F***KED UP, DID YOU GET PUNCHED IN THE MOUTH?!”) No matter how much self confidence, esteem, and respect you have, interactions like that can really put a damper on your mood and honestly make you feel less valid. Luckily I’m a boy, and I don’t mean this in any type of way, but I just feel our society in the United States puts such a bigger emphasis on girls to look good (if not 'perfect’), so I always have a deeper level of sympathy for girls with the condition and frankly feel so lucky to have been born a boy (again I’m not saying anything about girls, just that in my 20 short years of life experience I can only imagine how much deeper my sorrow and self esteem issues could have been had I been born with the same situation in the other gender… so any girls reading this with cleft lip/palate, I feel for you, in this cruel society that puts so much emphasis on girls’ appearances, yet much less for boys).

Perhaps I was digressing a little bit there but these are just some of the thoughts I’ve had while looking through your inspiring blog, and it really is so nice to hear from other people who have gone through similar internal struggles for deformities they had NO control over. It’s so sad, that so many of us have to feel so self conscious on a daily basis, because what, our face isn’t as symmetrical as it could be. As Gaga once said, I was born this way, and that message really rings true when looking at this blog. To have the courage to put yourself out there like this, to release your deepest insecurities to the world and share your struggles is truly inspirational, and I mean that with the utmost sincerity. I almost felt like crying just looking at this blog and all the posts of people who are just trying to feel confident with how they look, putting their baby pictures up, talking about their surgeries; it’s like we’re all living the same life but in different bodies (maybe that’s an exaggeration, but to an extent we all go through a very similar struggle and that’s what makes this blog unique). And I’m sure there are other online forums and blogs for communities of people with all sorts of birth defects, diseases, and ailments, but as cleftie myself, this one really hits home, and to be honest I had never seen an online community for people with our situation anywhere before (not that I was actively seeking one out), but it’s just so uplifting to know somewhere else there are people who know exactly what you’re going through, not just by you telling them, but by them having actually gone through it themselves (some days I really do question the helpfulness of the internet, and it’s days like today that make me say, “wow, the internet really does do some good stuff.”) This blog touched my heart, and I want to thank you personally for providing this place where people like myself, and the hundreds of thousands of us clefties can feel welcome, if sometimes society makes us feel otherwise.

Thank you,

Gabriel 

[thecleftchronicles]

Braxton

Hey guys! I started a blog for my son who isn’t quite here yet but we found out he has a cleft lip. Feel free to follow!

babybraxton.com

[thecleftchronicles]

I found this blog a while ago and I think it's such an amazing blog. I just thought that I could share something. I am 19 (born with a cleft lip) and two days ago I had my (hopefully) final surgery and I have never been so happy. So if anyone reads this, just know that it may not get easier but it does get better and I am proud of my cleft lip. And I am fortunate to have had the care from day one. Anyway, keep up the awesome blogging.

Thanks for sharing your story, friend! <3

[alicemariemusic]

Feelin like a gosh darn cutie cleftie today

[thecleftchronicles]

Hello everyone! My name Ryan and I was born with a cleft lip and palate. Just wanna say that I absolutely love the message of this blog... I only wish I'd found about it sooner! I've just started my own little blog http://facingadvocacy.tumblr.com It's a social media project that aims to raise awareness and support for people living with a condition that affects their appearance. At the moment I've just done a few short, entertaining/funny videos and hope to do some more informative and educational content soon. You're all welcome to check it out! Anyways, I love looking through this blog. Keep sharing xx https://youtu.be/I9BX_MZbSaA