Ectrodactyly Ectodermal Dysplasia Cleft Lip/Palate

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    Community Voices

    I’m in a bar

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    Meg Zucker

    What I Wish 'The Witches' Producers Understood About Ectrodactyly

    My favorite costume I ever wore was not something purchased at a local party store or CVS. In fact, I was tens of thousands of miles away from access to one. I was a student at the International School of Islamabad and our second-grade class was given the honor of leading the elementary school’s special Halloween parade. At a loss for a costume, I huddled with my best friend Kirsten who bragged that she was going as Holly Hobbie courtesy of a costume her grandmother gave her before they left the U.S. Watching me struggle to come up with something, Kirsten offered me her mother’s pointy black hat. Like me, Kirsten was an American living in Pakistan with her family. Despite our closeness, she was completely oblivious to the emotional pain her suggestion had caused. I informed her that I would prefer to wear my mother’s white nightgown and be an angel. The last thing I wanted was to be associated with something wicked. In fact, I’d spend inordinate amounts of time thinking about how I could be the most beautiful version of myself. An extreme lover of fashion as an adult, I often wonder if my passion for wearing pretty clothes stemmed from something deeper. I yearned for strangers to become distracted by something attractive on my body rather than my body itself. I was born with ectrodactyly, a condition that I passed to two of my three children. It’s a genetic condition that literally means “missing digits.” In other words, born with one finger on each hand, shortened forearms and one toe on each foot, learning my condition’s name told me nothing I didn’t already know. In the current remake of the Roald Dahl movie “Witches,” a young orphaned boy goes to live with his grandmother, played by Octavia Spencer. To their horror and unfortunate timing, they encounter at a seaside resort the world’s Grand High Witch, played by Anne Hathaway and her fellow wicked companions from around the globe. Hathaway’s character is deceptively glamorous. She appears elegant in public, but in private with the other sorcerers, she discards her wig to reveal her baldness and displays hands with only three, long spindly fingers. The witches are presented not only as evil, but as enemies of children; ghouls to be feared. My first reaction to seeing the Grand High Witch’s hands was a memory of my encounter with the accomplished, now-retired American journalist Bree Walker. Bree, like me, has ectrodactyly and also passed it to her children. When I was a child, my cousin gave me Bree’s address so I could connect with someone successful that shared my condition. Like my parents, she understood that the ego of a child born different can be extremely fragile and may need constant emotional support. Just that summer, I had attended a party where the parent had pre-warned the child a girl would be coming who only had one finger on each hand. When I stepped through the door, birthday present in hand, the birthday boy yelled, “Monster! Monster!” and ran to his room. It took my parents a long time to help me overcome it. In a November 1980 letter to Bree, I shared my hope of becoming a lawyer or journalist one day, wondering if she had any advice for me. The following month she wrote back. “Dear Meg. Thank you for your letter. It was nice to hear from you. Yes, I was born looking different like you, but it has never held me back. In fact, my life has been as normal as I imagine yours has been as well….one thing is certain. I wouldn’t be here without the unconditional support of my parents.” Recently, “Witches” generated a swift and passionate backlash by many parents of the limb different community. I suspect parents of kids with alopecia (an autoimmune condition causing hair loss) will feel similarly impacted. It is no wonder. As a parent of children who are physically different, I felt the demonic imagery from the film was at best deeply insensitive and at worst destructive to impressionable kids learning to accept their bodies. It sends just the wrong cues, making children who are different objects of fear just as they are desperate to fit into their social world. In response, both Warner Brothers and Hathaway have issued public regret. Hathaway’s apology felt particularly sincere. “I owe a special apology to everyone who loves you as fiercely as I love my own kids: I am sorry I let your family down.” Thinking back to the parade in Pakistan, as I walked in front of the crowd of onlookers, other students and their families, the angel costume was indeed my favorite — but not for obvious reasons. It allowed me to hide my difference in its long, flowing white sleeves that draped well past my short arms and one-fingered hands. Covered up, I felt I looked on the outside how I longed to feel on the inside — beautiful. Whether kids are missing fingers, hair or anything else, they are struggling to discover the power of unconditional self-acceptance. While all kids are wrestling with their own issues, those who cannot hide a physical difference are forced to share their daily struggle with an often unsympathetic world. For movie studios, and those who tell stories for kids, more thought and understanding needs to go into the messages they are sending. I don’t expect that every screenwriter or studio exec can immediately understand what it is like to walk in my shoes or those of my family and those like us, but when considering the carefulness those same creative people are no doubt practicing with regard to body image, diverse representation and many other sensitive issues in our society, it would seem reasonable for them to consider their impact on vulnerable communities. In a recent interview in Inside Edition, Bree’s daughter Andrea (who shares her mother’s condition) was asked whether this portrayal set us back. Andrea put it best. “It may be that it has set us back a bit. However, if we are having this conversation, maybe it’s a silver lining.”

    Wendy Williams Apologizes for Joaquin Phoenix Cleft Lip Gesture

    Wendy Williams landed herself in hot water after comments she made in “appreciation” of Joaquin Phoenix’s cleft lip were called out as offensive. She has since apologized. During a recent episode of “The Wendy Williams Show,” the TV host was discussing how Beyoncé did not stand during Phoenix’s Golden Globes win for “Joker.” The conversation quickly transitioned into a discussion of Phoenix’s appearance after Williams said she found the actor “oddly attractive.” “He’s got that good nose. It dips way down like he’s happy with it, so am I,” Williams said. “When he shaves off his mustache, he’s got a hairline fracture. He’s got one of those, what do you call that? Cleft lip, cleft palate.” While describing Phoenix’s facial difference, Williams pulled her lip up to imitate a cleft lip in an offensive gesture many on social media were quick to call her out for, while a petition circulated asking her to be fired from the daytime talk show. This is so mean— Yashar Ali ???? (@yashar) January 16, 2020 @WendyWilliams I Was Going To Try & Hold My Temper????????BUT IM SO F-NG ANGRY I CANT????.In 1985 I Made a Film Called“MASK”‼️THROUGH THAT FILM I BECAME INVOLVED WITH CHILDREN,& ADULTS WHO HAD CRANIOFACIAL ANOMALIES. YOU HAVE NO IDEA WHAT THESE PPL GO THROUGH‼️20+ OPERATIONS— Cher (@cher) January 16, 2020 As Ambassador for Cleft Lip and Palate Association @CLAPACOMMUNITY I really am disgusted by this @wendywilliams.. Mimicing a cleft lip, and making a joke about it, is disgraceful. Have you any idea the pain and operations a child with cleft must go through as they grow? Please RT— Carol Vorderman (@carolvorders) January 9, 2020 This needs a RT!!! ????????????@WendyWilliams mimics a cleft lip and palate person!! I have a cleft lip and palate, so does my son who was just born, her actions are hideous and OFFENSIVE. Promoting bullying, with her platform, that’s IRRESPONSIBLE!! #EndBullying— Adam Bighill (@Bighill44) January 10, 2020 CLAPA is calling on @WendyWilliams to issue a public, on air apology for her ignorant, offensive actions on her show this week, and to educate herself about the reality of cleft lip and palate around the world @carolvorders— CLAPA Community (@CLAPACOMMUNITY) January 10, 2020 Wendy, my little sister was born with a cleft pallet. Making fun of anyone for being born with it is just gross and cruel. If anyone wants to help children born with them @operationsmile does incredible work providing cleft lip and palate repair surgeries to children worldwide.— Meghan McCain (@MeghanMcCain) January 16, 2020 As a fellow minority in the media I’m sure @WendyWilliams has had to deal with and overcome much prejudice. It is therefor both alarming and upsetting that she could so casually and publicly mock those who have a cleft lip. Mocking Disability is Mocking Diversity #WendyWilliams.— Adam Pearson (@Adam_Pearson) January 12, 2020 Following the backlash online, Williams apologized for her comments and gesture on Twitter Wednesday, adding “The Wendy Williams Show” had donated to the cleft palate organizations Operation Smile and American Cleft Palate-Craniofacial Association. “I want to apologize to the cleft community,” Williams wrote. “[We] encourage our Wendy Watchers to learn more and help support the cleft community.” . @Bighill44 We’re thinking about Beau today as he is in surgery. I want to apologize to the cleft community and in Beau’s honor, our show is donating to @operationsmile and @AmerCleftPalate and encourage our Wendy Watchers to learn more and help support the cleft community.— Wendy Williams (@WendyWilliams) January 16, 2020

    Community Voices

    Capitol Crawl Commemorative Rally #CCCRally

    <p>Capitol Crawl Commemorative Rally <a class="tm-topic-link ugc-topic" title="CCCRally" href="/topic/cccrally/" data-id="5deb1672123b7500d964c320" data-name="CCCRally" aria-label="hashtag CCCRally">#CCCRally</a> </p>
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    Tabitha Yates

    Self-Care Looks Different to Every Mom

    Self-care looks different for every mom, yet sometimes we try to impose our definitions of self-care onto our mom friends or acquaintances. I have admittedly not been good with self-care. No one would run through a list of my qualities and be like, “I really admire how well she balances taking care of her family with taking care of her own mental health.” Do I see the value in self-care? Absolutely! However, I believe every mom goes through different seasons, where something her child or family is going through asks more of her, and she needs to do whatever she feels is best in those seasons of life, whether it means some days she needs more time for herself or some days she gets none. You also hear about mom shaming, because of a mother taking care of herself or time out for herself, but I have lived the very opposite, and it’s difficult as well. I didn’t expect to have an out of the ordinary first time parenting experience, but when my daughter was born with a cleft palate, hearing loss, feeding difficulties, severe apnea, required oxygen and later was diagnosed with sensory processing disorder and autism… I felt like what she needed from me in that time in our lives far outweighed anything I would need or want to do for myself. My life became about therapy around the clock, surgeries, specialists, always watching her breathe and praying she wouldn’t stop. I was an Army wife. My husband was in Afghanistan. I had no family and hardly any friends in our duty station and yet everyone I knew kept telling me I needed to go out. I needed a bath. I needed a nap. I needed to get my nails done. I needed to go to a spa. They meant well. I know they did. They were worried about me. They felt bad for the stress I was under and felt all their suggestions were helpful to me. However, it tended to make me feel even worse. For starters, I literally did not have a single soul who could help me with my daughter, so I couldn’t do any of those things. I was doing the best I could alone, to keep my head above water most days. It also felt like no one understood how much the sacrifice was my choice. I wanted to help my daughter get healthier. I wanted to be the one sleeping next to her on the hospital floor. I wanted to be the first face she saw when she woke up from surgeries, scared and in pain. I wanted to learn how to do all her therapies with her, so I could give her the best shot at a good future. I wanted it to be me, as draining and soul sucking as it was sometimes. My husband — he understood this about me. He understood that she came first to me. He knew that no matter how many times he would encourage me to get out or take a bath, that I would choose her every time. Both he and I knew this wouldn’t last forever and that her needs outweighed ours and we lovingly did what she needed us to do in that season of her life. Fast forward eight years and add two more kids. I just graduated from a 40-hour self-defense course. I go get the occasional pedicure. I treat myself to daily Dutch Bro’s. My husband puts the kids down for bed, so I can sit at Starbucks and write or go for a drive without being asked 5,000 questions and listening to a Blippi soundtrack. I take care of myself better than I ever have, but it was on my terms, in the way I felt good about it. Listen Mamas, the only person who truly knows your heart is the Good Lord and you! You are the only one who needs to approve of how you parent and how you take care of yourself. It is alright if that looks differently than other people tell you it should. It’s OK if it’s all too much sometimes and it’s OK to push through the tears and exhaustion. It’s OK to take a day at the spa and it’s OK if taking a shower every two to three days feels like a victory. It’s OK to want a night out in clothes that aren’t covered in mac n’ cheese and ketchup and it’s OK to feel like there’s no place in the world you’d rather be than curled up with your babies, listening to them breathing. Self-care looks different to each and every one of us at different times in our lives. At the end of the day, when you climb into bed and your soul is weary, you are the only one who has to feel content with what you gave to the day and what you gave to yourself. It was your best, and it was enough.

    Corey Taylor

    Going Through a Craniofacial Journey: It Gets Better

    During any journey many moments can seem dark, but knowing things will get better can give you strength when you need it most. I’m here to tell everyone, children and adults alike going through a craniofacial journey that with strength, understanding, love, and support I believe you will come out on the other side better off in every way. My family was told that I’d be deaf, blind and mentally challenged. Now here I am at 29 years old, telling you my story. The only thing the doctor who made those claims had right was my vision, and he was only half right. So I’m here to tell you that if I can overcome the medical and emotional trials and tribulations that came with my journey, I believe you can too. I was born with what has always been called a severe craniofacial condition: an extreme cleft palate and hypertelorism. Most reading this article have probably seen or read “Wonder” and know the story of Auggie Pullman, a boy born with Treacher Collins syndrome. Though my condition was a little more complex in some areas, to say I could relate to “Wonder” would be an understatement. Corey as a newborn. My diagnoses included: No bone structure in my nose, which meant I had no nasal airway. I had a severely underdeveloped left eye and the casing of my brain was collapsing. And because of my cleft palate, my jaw was severely misshapen. It was like a V as opposed to a typical jaw, which is more U-shaped. This meant if I didn’t go through the years of orthodontic work and eventual surgery, my teeth would have clumped together in such a way I’d have lost them by the time I hit 20 years old. When I was born I was immediately transported to Cornell University Medical Center where I had a tube put in my neck to help me breathe. When they got my breathing stable, they took account of the rest of the issues caused by the craniofacial condition. I was lucky enough to have Dr. Gregory LaTrenta as my doctor for the first few years of my life; a doctor who literally held my brain in his hands during an operation. A doctor I wouldn’t be here telling you this story without. It took me years to understand what was going on. It was just a part of life. Going from Cuddebackville, N.Y. to New York City all the time and getting poked and prodded by doctors was just a part of life. Surgeries were just a part of my life. What? Didn’t everybody live this way? No? Everybody wasn’t completely blind in one eye and partially blind in the other? Smelling? What was that? I didn’t miss it or anything else because life was good. Why miss what I never had? I had a large supportive family including parents, my grandmother Mary and PaPa Jim, who were all my rocks. I went to a regular elementary school and had no problems with anybody because I kept to myself for the most part. Even if I didn’t know it at the time, everybody liked me. I was nice to everybody, but unless someone talked to me, I more or less kept to myself until third grade. I was shy and because of my appearance I thought if I went up and talked to other kids it would make them uncomfortable. Even at a young age making people uncomfortable was always my concern. Before I started kindergarten, my parents made a videotape of me and sent it to the school. They showed it to the kids. They later showed that same video to other schools as I entered middle school. I heard all about the video growing up and it was a great way to introduce me to my new classmates, although a little awkward at times. Ironically, the only place I ever felt dejected was at a camp for the visually impaired. I thought it would be a great place to meet people because everyone had vision disabilities and nobody would care about my appearance. One day at lunch, a girl who was completely blind asked a monitor nearby if it was true that someone looked “like the elephant man.” That stung. Then to top it off we were given a lesson about how to walk around a mall and I was told to meet them at a spot, so I did. They met at a different spot and actually accidentally left me at the mall. Needless to say, I didn’t make it a week at that place. I wanted to go home. I had family, a few good friends, and an obsession with professional wrestling that still exists today. It took me a while to get over the negative camp experience and to be able to explore life outside my house much. For a period of time I was one happy kid in my little bubble. After seeing Dr. Latrenta for a few years, and after various long, risky operations on my head, Dr. Latrenta told us he was going to be changing his specialty. I will never forget all he did for me. After a year or two of looking around and going to a few different hospitals, we ended up at the very hospital Dr. Latrenta graduated from, NYU Langone Medical Center. The hospital where I’d be treated for the next 10 or so years of my life. I met the head of the craniofacial team, Dr. McCarthy, and Dr. Grayson the head of the orthodontic team at NYU, and they did many procedures to help my quality of life. From orthodontic work to reconstructing my nose. They had their hands full. They took skin from my forehead, cartilage from my hip, and other things I’m probably forgetting about to create my nose. Watching Dr. McCarthy look at me, study me, I truly saw that he loved what he was doing and was like an artist preparing to create. My misshapen jaw called for a lot of orthodontic work. I had braces, retainers, expanders, and God only knows what else done to my mouth. It was all worth it in the end, and I’m grateful for the orthodontist Dr. Grayson and his team who did my mouth work. Even if it may have occasionally felt like cruel and unusual punishment, it was worth it. I won’t lie and say everything was painless, but it wasn’t as painful as readers may think. If I’m completely honest, the worst physical pain was a Foley catheter. I won’t go into detail about what that is for your sake, but ouch! Overall, the worst pain was emotional and mental trauma, especially after recovering from one specific surgery. I woke up with a blue wax-like cast stitched into my nose. I had to have it for a month or two and wasn’t sure how my nose was going to look, but to say I was excited to get that thing off was an understatement. That procedure was one of the final surgeries, but it was a big one so I assumed my nose would look even better when the cast came off. After a few weeks of eagerly waiting with the occasional nightmare that the cast fell off in the bathtub and my nose fell off with it, it was finally time to go and get the brace off. I went into the room and a fellow, a student of Dr. McCarthy’s, snipped the cast in two places and practically yanked it off. It stung just a bit as you can probably expect, and it wasn’t done gently. He practically shoved a mirror in my face and I felt the wind knocked out of me. The bone structure and everything was still there, but the skin from my nose was gone. I felt like I was in a horror movie and Freddy Krueger tore my nose off. They said it needed to air out and relax for a few weeks or something along those lines. The rest of that visit is a blur, because I couldn’t stop breathlessly sobbing as my mother hugged me. I felt like a monster. The fellow was about to lead me out of the room after the appointment to wait to see Dr. McCarthy who hadn’t seen me yet and the doctor wanted me to wait in the waiting room with no bandage or anything over the exposed nose. I already knew people stared at me on a good day, which doesn’t bother me anymore. Instead I am eager to get asked questions. I believe that answering questions helps educate people who have no idea about what happened to my face. Plus it prevents them from coming up with their own reasons and I’ve heard some doozies. But at that point I was not in a place where I could accept being stared at, and the waiting room was full of little kids and I didn’t want to scare them. Knowing how I felt, my mother spoke up for me and demanded I have a gauze or something to cover it. Despite the appearance, Dr. McCarthy was happy with the way it turned out and said the next surgery would be one of the last big surgeries on my nose and after that would be fine tuning, but apparently things were going to plan. During the time that the skin was off my nose, I did my best to avoid the world, but still had to face my family. My cousins all acted like everything was fine, and we went on playing video games and watching wrestling like nothing was different, but I was genuinely nervous about how the outside world would react. A month or so later, I finally went back to the surgeon, and we prepped for the final “big” nose surgery. They needed to cut my forehead to make a flap for the skin on my nose. I once again came out of surgery, and instead of a nose, this time it looked like someone was playing with Play-doh and just plopped it on my face. It went from my forehead to my nostrils. It wasn’t perfect, but it was at least getting better. The real progress was during a “minor” surgery four months later where they took the skin flap and shaped it, and I finally had a nose. For the next year, every four months was another minor surgery where my nose was further shaped. In between my nose surgeries, I had my mouth worked on and after years with braces, retainers, etc. and almost eight years of the discomfort, I was really getting tired. It says something when someone has surgery after surgery and handles it like a champ, but cries like a baby in a dentist chair. All of the dental work was leading up to a surgery referred to as a Lefort 1. They surgically broke my jaw and screwed a device into my skull and the roof of my mouth to reset my jaw in the correct spot. I didn’t care how it looked, but what I did care about was the discomfort. I had a mini fridge in my room for drinks during my recovery. One night I had a towel on my floor and went to pick it up. When I bent down and pulled, I didn’t know it was stuck in the door of the mini fridge and the door flew open and hit the device sending pain radiating through my jaw and forehead. At 21 years old I am not ashamed to say I sat in my bed literally rocking as I cried in pain. Once the device was off and my jaw was done, I was eager to see what was next. A few months after all my nose procedures and a month or two after my mouth was done I had a meeting with the team. They told me that with every surgery there is a risk of losing the progress already made and they thought it was time to stop. Looking back I am pretty sure there was more to the story, but that was that. Even though I felt incomplete, and I still to this day wish I had more surgeries done, I accepted the finality of my surgeries. They told us they could continue, but wanted to make us aware of the risk. I knew the choice was already made for me. Even if the decision wasn’t technically made for me, when you tell someone who went through so much to get where he was that he could lose all the progress, it puts the fear of God in him. So I accepted that even if I didn’t necessarily feel finished, it was time to put the operations behind me and figure out what was next. If later down the road opportunity knocked to improve things further I won’t lie and say I wouldn’t consider it, but for the time being it was time to move on. I started college but after a two and a half years, stopped when my grandmother had a massive stroke. My mother and aunt worked a lot, so I cared for my grandmother when they weren’t around. After all her years taking care of me and being by my side during surgeries, it was my turn to help take care of her. We all lived very close. Literally down a dirt driveway from my house was my grandmother’s house, so it made “running away” easy when I was little and mom or dad grounded me. I was grandma’s boy and proud of it. One night about four years after grandma had her stroke, Mom offered me the night off to relax. I accepted the offer. I went back at 8 a.m. the next morning so my mom could go to the gym. The first thing I saw when I walked in was my grandmother turned over in her wheelchair on the floor. I tried to lift her up and looked to the left and in the bedroom was my mother, unable to speak or move. She was having a stroke. Doctors told us she wasn’t going to make it and told us to say our goodbyes. Years later she is still with us and is walking. She still struggles with speaking and impulses, but she’s still with us. Caring for Grandma was rewarding, and it allowed me to work on my passion for writing. R.L. Stine, the creator of “Goosebumps,” was the reason I started writing. One day going to and from my grandmother’s bedroom I opened my laptop and happened to spot a Facebook post by R.L. Stine announcing he’d be at a writer’s conference across the country in Colorado Springs. Usually I’d think I couldn’t do it for this reason or that , but within an hour I got a sitter for my grandmother for the days I’d be gone, I bought the plane ticket, and I was set up to take my first trip alone… on a plane across the country. I was petrified from the moment I bought the tickets. That April I was off to attend the Pikes Peak Writer’s Conference. I had never gone anywhere without someone I knew by my side, but I did it. I called the airport ahead of time and got special assistance assisting me to each gate because of my vision. Without that help, I’d still be wandering around an airport somewhere. I was able to meet many other writers that weekend. They call writers a tribe and that is a great way to describe us, because when you meet other writers, it’s like meeting long-lost relatives. On the first day of the conference I was walking down the hall and walking toward me was the R.L. Stine. The creator of “Goosebumps.” A God of writing. The man who is the reason I started writing in the first place. I was split. Do I just smile, nod and walk on or do I say something? I found my voice, stopped him, thanked him and told him he was the reason I was trying to become a writer. It was so fulfilling being able to tell him. If that were the end of my interaction with him I’d have been content, but then that day I was in line outside the ballroom waiting for lunch. The conference organizer came over and asked me to follow her. She put me right at R.L. Stine’s table for lunch, and I actually got to talk to him and listen to him and his wife, an editor, tell stories about their careers and life together, and I felt very at ease. Not starstruck, but like I was talking shop with a fellow writer. Corey and R.L. Stine. That weekend when I was standing outside waiting for the cab to take me back to the airport to go home I smiled and said to myself “I’m a writer” and for the first time I felt complete. My grandmother passed away this past July. After caring for her for about nine years, I stood at the grave and said my goodbyes. I promised her that anything and everything I have achieved or will achieve is because of all that she taught me, and I meant it. A few months after she has been gone I’m still trying to find myself. I’m still a work in progress and am struggling with weight loss, but am working hard at fixing that. The big thing right now is trying to find work in writing. I have a complete small town psychological thriller that is a start of a series and an autobiographical novel based heavily on my life in the works. Neither have been picked up by any agents or publishers but I’m hopeful that they both will. Maybe even on TV or movie screens someday. I am the most self-deprecating person you will ever meet and even I have to give myself credit because both books have serious potential. While I wait to get my books picked up and published I’m hoping to find a job in writing online or a job that pays you to write while you travel. Or even better a job writing for the WWE in some capacity. Trying to find a paying writing gig is hard, but finding a good one is like finding a needle in a haystack, so I have to be rational. If I can’t find a job in writing anytime soon I’m at least hoping to get a 9 to 5 job to gain some income while I work on achieving my dream of becoming a published author and getting a place of my own. I’m confident that it is only a matter of time before you see my name on bookshelves. I am also seeking out filmmakers on the off-chance they’d like to help me turn my story into a documentary. From a very sheltered boy who was predicted to be deaf, blind and intellectually disabled, to traveling across the country alone to meet my idol, to writing a psychological thriller and caring for my mother and grandmother, I am the perfect example that you make your own destiny and that with dark there is light soon to follow. When I was 16 or 17 years old and my days at NYU were coming to a close, I saw young kids starting their journey, and parents trying to hide the nerves racing through them. I have always wanted to tell them that it gets better. I hope this article shows them just that: things will get better. So anyone going through a craniofacial journey, or any journey for that matter, just hang on, and keep going. It gets better. We want to hear your story. Become a Mighty contributor here . Photos provided by contributor.

    S. Heller
    S. Heller @s-heller

    What Google Couldn't Tell Me About My Son's Condition

    When I found out my son was going to have a cleft lip and palate and a rare chromosome disorder, I did exactly what the doctors told me not to do: I Googled. I Googled everything, every day. It consumed the last four months of my pregnancy, terrified me to give birth to my son, and took away every ounce of hope I had left. Google told me I would not be able to breastfeed my baby, that he may never walk and that his developmental delay would be severe. While Google told me all of the things my son wouldn’t be able to do, Google didn’t tell me what my son would be able to do. Google didn’t tell me my son would have the ability to steal the hearts of everybody he met. Google didn’t tell me I would be so in love with his beautiful wide smile or that complete strangers would, too. Google told me people would stare and make rude comments. Google didn’t tell me strangers would go out of their way to tell me that my son is beautiful. Google told me that my son might not meet certain milestones. Google told me every child is different and would meet their milestones at their own speed. Google didn’t tell me how much joy we would feel when he hit these milestones. Google didn’t tell me how proud I would be to be my son’s mother. Google told me this first year was going to be hard. Google told me that my baby would go under surgery multiple times this year to correct his “imperfect” face. Google didn’t tell me I would wish for more time with my son’s cleft lip. Google didn’t tell me I would mourn the loss of his first smile. Google told me a cleft lip and palate was a common birth defect. Google told me I would find support through other parents going through this. Google didn’t tell me that my fellow cleft mom’s would end up being some of my most cherished friends. Google cannot define my son’s diagnoses, only he can. He will show us what he is capable of and overcome obstacles at his speed, and I think that is something truly special. Follow this journey at We want to hear your story. Become a Mighty contributor here .

    Sarah Young

    Overcoming Bullying and Judgment Due to Cleft Lip

    Sitting on my floor, in a black pouch with a white “S” on the side, there is around $406 worth of lipsticks, lipstains, and glosses. In Mac, Too Faced, and CoverGirl casings are bright and bold reds, oranges, purples, blues, and even a few greens. People I met on campus would often say to me, “You always have such cool lipstick on, I wish I could pull that off!” I smile, maybe even blush, and thank them. What they would never know is how hard it has been in the past to put that lipstick on in the morning. My bottom lip isn’t too bad to work with; there is a bit of a scar sitting on top of a bundle of scar tissue that creates a small bump. While lipstick will never look completely smooth across it, I can handle it. My top lip, however, is much more difficult. To the left of the scar, there is a bit more tissue, a stark contrast to the much thinner right side. The top half of the scar connects to the left side of my septum and is far more noticeable than the bottom half. Although it is less defined now, the difference in density on either side of the scar was quite obvious. It looked as if I had been stung by a bee on that side, and it had swelled to twice its usual size. Trying to put lipstick on the top half is close to impossible, considering there is hardly a centimeter of upper lip to work with. Even after they sewed together the gaping hole of my cleft lip, I still felt raw, exposed and incomplete. Though this birth defect has only left me with a difficulty breathing through my nose at night, it has altered my image of myself in ways that will never leave me. Growing up with my thin, scarred lip was incredibly difficult. Children can be cruel when confronted with something they have never seen before or do not understand. I became the butt of every joke, the gross weird girl who kept quiet all the time. In the first grade, I had a massive crush on one of the more “popular” boys in my class (let’s just call him Tim). One day during snack time, the popular girl that sat next to me asked if I like-liked anyone in class. I looked away from her, staring down at my blue-camouflage print t-shirt that said “Girl Power” in silver glitter. “Why would she talk to me?” I wondered. Still, she prodded, “C’mon, I think I know who it is and I think he might like-like you back!” I kept my head down, but my eyes drifted slightly in her direction. She was smiling and squirming in her seat. I desperately wanted to believe she was being honest, but a miscalculation in trust such as this could be a monumental disaster. “Is it Tim?” she asked, leaning down a bit so she could scan for some sort of reaction. Despite my best efforts, I blushed like a sunburned tomato. “I knew it!” she squealed. “Hey Tim, it’s true! She does like you!” I lifted my head slightly, terrified to see his response. “Ew! No lip likes Tim!” his friend shouted. He just sank into his chair and placed his forehead against the desk, shielding his beet-red face. This kind of cruelty would not be left behind with elementary school, either. At 13 I went on my very first date – to the movies, of course – and the boy told me not to tell anyone about it: “Well, they made fun of me when I went out with Jessica, so I can’t imagine what they’d say about you.” I tried to push that thought down as I got ready that night. In my bright red skinny jeans and black plaid vest with the fur-lined hood, I waited outside the theater, anxiously biting at the edges of my black long-sleeved shirt. The movie we wanted to see was sold out, so we just picked the only other one playing soon “He’s Just Not That Into You.” As the previews started, he pulled the old “yawn and stretch” maneuver to get his arm around me. My heart pounding in my ears, I rested my head on his shoulder, pleading with the powers that be for this not to be a dream. A couple minutes later, he leaned in and whispered in my ear, “Do you wanna… you know…” and motioned to his crotch. Being only 13 on my very first date ever, I nearly shouted, “No!” He nodded, “Yeah, never mind that was bad. I’m sorry.” I tried to brush it off, thinking he genuinely made a mistake. A minute or two later, he leaned in again but didn’t say anything. “Oh shit, this is it,” I thought, and leaned in too, expecting my first kiss. Instead, he backed away. “Uh, no offense, but I don’t want to kiss you,” he said, including a slight gesture to his upper lip, while staring at mine. “I think we would be better off as friends. Anyway, I texted my brother to pick me up early,” and with that he got up and left me, sitting there alone, in the middle of the very appropriately named film we had chosen. Too embarrassed to call my mom, I sat through the rest of the film. When I got into the car she excitedly asked, “So how was it? Wait, where is he? Didn’t he walk out with you?” I lost my composure within about two seconds, openly weeping in her car. I told her everything in the brief pauses between my heaving sobs. She remained silent through the whole story, until we came upon a 7-11. At the last second she whipped into the parking lot. “What kind of ice cream do you want?” she asked, furiously unbuckling her seat belt. We settled in that night with two pints of Moose Tracks and “When Harry Met Sally.” Halfway through the movie, my mother turned to me. “You know, Dad didn’t even notice my lip until I pointed it out. The right person won’t see it or care, and this jerk clearly wasn’t the right one.” She reached over and put her hand on mine. “You want someone who will love you for exactly who you are.” Although everyone may think this about their mother, I truly believe her to be a saint. In the face of sheer cruelty, she remained kind and optimistic. When she was born, her grandmother turned to her mother and said, “What did you do to make God punish you this way?” as if her cleft lip had been the consequence of some horrific past transgression. When she found out I would also have a cleft lip, my father told her, “All I wanted was a little girl, just like you.” He is truly the right one, for the both of us. As this ironic universe would have it, my favorite thing in the entire world would be lipstick. Watching classic Hollywood stars like Marilyn Monroe and Jane Russell, I would dream of the day they “fixed” my lips so I could rock that iconic red lipstick. But the world kept telling me that lipstick wasn’t for me. When I had my makeup done for first communion pictures, the woman put this frosted, pink gloss on my lips. Though its scent was reminiscent of coffee beans and Vics Vapor rub, it had been the first lip product I was allowed to wear that had any sort of color. I felt like the most glamorous thing since Jane Mansfield, but when I finally looked in the mirror, I saw that she had tried to draw “normal” lips over my own. Instead of Jane, I felt like Bette Midler in “Hocus Pocus.” From that point on, lipstick and I kept a loose, long-distance relationship as I stared longingly at the bright pinks from the chapstick aisle of CVS. As I grew up, my heart broke more and more, watching girls slather on that pink gloss I pined for and make kiss marks on notes to boys, knowing my own mark would never look quite right. I even tried using a lip plumping gloss from Victoria’s Secret, only to have a close friend of mine say, “I bet it’s just a scam anyway. None of this stuff ever works like it says it will,” trying to console me when my lips remained the same. On my 16th birthday, my best friend decided it was time I dressed up for real. She helped me pick out a teal, strapless dress at Forever 21 and paired it with black garter tights that featured a small trail of hearts up the thighs. I hadn’t worn a dress, let alone tights, in years, but she was determined to get me into one. And to go with this new dress, she helped me pick out a maroon lipstick. It took about 20 solid minutes to pump myself up enough to actually put it on that morning. There was a lot of pacing, bouncing up and down like a jogger at a red light, and telling myself, “Do it for Gaga, she’d want you to do it.” And finally, after my father reminded me I couldn’t afford another tardy, I did it. The girl who wore nothing but skinny jeans, her brother’s band t-shirts, and Converse high tops, was in a dress, tights, black fringe moccasin boots, and a full face of makeup. As I slipped into homeroom, my sweet as sugar cane teacher gasped, “Oh my goodness, don’t you look so beautiful!” in that southern drawl. I smiled a little and scurried to my seat. All day, people were stopping me in the hall to compliment me. A few even asked for the name of the lipstick I was wearing. Not one malicious stare, no “who the hell is she trying to fool?” eye rolls. When the friend who picked out the outfit saw me, she stopped, mouth agape, and the slightest hint of tears in her eyes, “You look so hot, oh my god!” she nearly screamed. That Revlon Black Cherry lipstick became a staple in all of my outfits. Soon I was buying darker maroons and even a few of the reds I used to envy on the lips of Marilyn. But I wasn’t able to really branch out. Just a little mascara, light brown eyeshadow, and my trusty Black Cherry. The summer my sister-in-law moved in, it was just the two of us home during the day. Being a makeup artist, she asked if she could experiment with new looks on me. I hesitated a bit, remembering the first communion pictures and dance recital looks that left me resembling Mimi from the Drew Carey Show. “C’mon, you’ll look great! You have the perfect eyes for a smoky look!” she pleaded. Accepting the fact that I had nothing else to do, I agreed. “Just, let me do the lipstick,” I bargained. When it came time for lipstick, I shakily dragged the Mac Ruby Woo across my bottom lip. Sensing the gravity of the situation, she interjected, “You know, with your lip line, don’t smudge back and forth, go side to side.” I glanced away from the mirror, her sitting across from me, smiling. Not the kind of smile that feels like a patronizing pat on the head, but one that felt supportive, understanding. “Sorry, I’m not really made for lipstick,” I said, nervously laughing at my dark joke. Her nose scrunched up, her brow furrowing a bit, “What are you talking about? You always look great when you wear lipstick.” “Does she not see it?” I wondered to myself. “Well, because of my lip, it’s a bit harder to wear. People were always drawing lips on me when they did my makeup,” I explained. She rolled her eyes. “Oh my god! I don’t understand why people do that. Makeup is about accentuating what you have. When I work with clients, I like to try and create a look that brings forth their inner beauty; to show them what I see inside them.” Since then, she has broadened my horizons with lip color and makeup in general, teaching me how to highlight all of my features. Not having a sister and having a mother who shared my fear of makeup, stores like Mac and Sephora intimidated the hell out of me. In my eyes, I saw a room full of girls like the one in first grade, guarding things that were never meant for someone like me. Now, I waltz in without a care in the world, knowing I have a place in this environment. I still required a bit of a pep talk each morning to put it on, but I did, determined to repair my relationship with lipstick. Then during an appointment with my plastic surgeon, a short, blonde woman I had never met before came in the room to look me over. She did the usual groping of my face in complete silence. I had never had an issue with my plastic surgeon doing this because he had been with me since the beginning; I was comfortable with him. This, however, made me feel like a lab rat. After a few moments of touching and poking, she remained standing incredibly close to the table I had been sitting on. Tilting her head to the side like a puppy, I knew what was about to come out of her mouth was going to be a huge heap of self-serving savior language. “Well, your bones have set nicely. Now we can go in, take some tissue from your cheeks so your cheekbones are more defined!” she cooed. “Now wait,” I thought, “I have always received compliments about my cheekbones. I thought we were here for my deviated septum and the leftover scar.” Ignoring my puzzled look, she went on, “And then, we can do another bone graft and borrow some more tissue so you can have nice, full, Angelina Jolie lips!” This comment knotted my stomach. Angelina Jolie is an incredibly beautiful woman, but I am not her. I don’t want to look like her, I want to look like me. But still, she stood there, smirking like she had just told Oliver Twist he could in fact have some more. The final straw came when she added, “Then you’ll finally be able to wear lipstick!” not knowing this had been the first day in two years that I hadn’t worn any. “Well, let’s get some ‘before’ pictures and then your doctor will be in to see you” she said, turning on her tacky clog heels to leave. My eyes stung as the door shut, thrust back into the years on the playground getting dirt kicked in my face. Images of my kiss marks next to others burned in my memory, along with the failed lip plumper, and the rolled up tissues I’d tuck under my upper lip. As I sat down on a stool in the next room to have the pictures taken, a tear slipped out. The woman taking pictures came over to me, asking what was wrong. When I told her what that horrible woman had said, she placed her hand on my shoulder, looked around the room, and whispered “F*** her, you can do whatever you want with your own body.” That kind but crude statement meant more to me than this stranger will ever know. With that, I reached into my pocket and pulled out my newest shade, “D for Danger” by Mac and put it on, along with a devilish grin when she and my doctor came back in the room. Looking me over, he talked more about fixing the deviated septum, knowing that was my main concern. During the exam he ran his thumbs over my cheekbones, “Wow, your bone structure has really come together! You have gorgeous cheekbones.” I looked past the two med students who were nodding in agreement to shoot a “haha, screw you” smirk at the blonde woman, who was now visibly uncomfortable. After that appointment, I made a point to wear lipstick every single day. I wanted to show the world, as well as myself, that I was going to live my life the way I wanted to. At first, it was worn out of spite, for telling me I cannot do something is a surefire way to get me to do it. Gradually, that anger faded, and I wore it simply because I liked the way it looked. Through this defiance, I learned to love my lips, and in turn, myself. Each day as I sit on the floor in front of my illuminated mirror, I put on my lipstick, taking part in my own tiny protest. And I look damn good doing it, too. We want to hear your story. Become a Mighty contributor here . Photo by contributor.