Face to Face: Stories by and for the craniofacial community
SCARS SHINE PURPOSE
By Megan Brown
February 27, 2018
They say the scars we have tell a story of how we got them. For me, I have scars on my face from being born with a craniofacial condition called a Hemangimoa. From my earliest memories I can recall how my scars and facial difference have impacted different areas of my life, most specifically, my perspective on life. I can still remember the raw feelings of awkwardness when meeting my new classmates in the 3rd grade for the first time and them staring at me. Their obvious stares indicated they were looking at me not because I was a new classmate or that I was shorter then most of them but because of the way my face looked different then what they were use to seeing. This was a pivotal moment in my life because I realized at this moment that whoever I met in my life one of the first characteristics they would see in me is my facial difference.
As of right, I have shared my story, in the last six months,174 times across all 50 USA states plus 6 other countries (Australia, Canada, Pakistan, Germany, Indonesia & England). Wow! Having the opportunity to share my story has taught me that regardless of where someone lives in this world we strive to want to be kind to one another and we have more similarities than differences. For example, when speaking to kids, over Skype, from Pakistan I had a special moment with one little girl, who was beaming from ear to ear, when we both realized we love swinging on swing-sets. Through our commonalities, we also all go through hardships. For me, one of my hardships has been my facial difference. I have discovered through sharing my story so many times that the scars on my face are just a roadmap to my past but don't define my future. Being able to share that wisdom and plant the seeds of hope, encouragement and love to others through my story truly makes me feel I am living out my purpose in life.
If you are interested in contacting Megan, she can be reached at email@example.com.
Stop Blaming the Victim
December 21, 2017
It Gets Better-Part One
By Corey Taylor
December 8, 2017
During any journey many moments can seem dark, but knowing that 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 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 twenty-nine years old telling you my story. The only thing that the doctor who made those claims, had right was my vision, and even with that 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, you can to.
I was born with what has always been called a severe craniofacial deformity: 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 deformity was a little more complex in some areas, To say I could relate to WONDER would be an understatement.
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 normal 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 twenty 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 deformity. I was lucky enough to have Dr. Gregory LaTrenta as my doctor for the first few years of my life; a doctor that literally held my brain in his hands during an operation. A doctor who 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, NY to New York City all the time, and getting poked and prodded by doctors, was just a part of life. Surgeries, 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 normal 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, if not 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 problems 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.
Stay Tuned for Part Two.
Part Two: It Gets Better
By Corey Taylor
December 11, 2017
I had family, a few good friends, and an obsession with professional wrestling that still exists today. It took me awhile 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 that 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 that Dr. Latrenta graduated from NYU Langone Medical Center. The hospital where I'd spend the next ten 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 that 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 that was 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 that 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 where I felt like I looked like a monster 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. My mother; knowing how I felt spoke up for me and somewhat 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 that 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 normal, 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 playdoh 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 put a device on me that they screwed into my skull and into 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 twenty-one 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, andI still to this day wish I had more surgeries done, I accepted the finality of my surgeries. They told us they’d 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.
Stay Tuned for the Conclusion
Part Three: It Gets Better
By Corey Taylor
December 13, 2017
I started college but after a two and a half years, stopped when my grandmother suffered a massive stroke. My mother was a nurse and worked nights and my aunt owned a hair salon so worked most days 8 to 6 so I cared for my grandmother when they weren’t around. All of 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 went out and then came back and offered me the night to go up front to our house and have a nice to relax. I accepted the offer. I went back at eight AM the next morning so my mom could go to the gym. The first thing I see when I walk 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 very 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 when I was in elementary school. I was in the school’s library and was reading SAY CHEESE AND DIE and when the bell rung I was jolted out of the book. I knew then that I wanted to do that. Take people out of their lives and into a world of my own creation. While caring for my grandmother, one day I was 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 it wasn’t going to happen or think I couldn’t do it for this reason or that reason 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 setup 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 Colorado Springs Colorado to attend the Pikes Peak Writers 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, 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.
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 sets up your travel arrangements since I can’t drive and pays you to write while you travel. Or even better a job writing for the WWE in some capacity. If anyone knows Vince McMahon or anyone high up in the WWE tell them I have an idea that could be good for both me and the WWE. Sadly, that is unlikely and trying to find a paying writing gig alone is hard enough 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 nine to five job to gain some income while I work on achieving my dream of becoming a published author and getting a place of my own. Even if I do get a nine to five job 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 being a very sheltered boy that was predicted to be deaf, blind and mentally challenged, 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 sixteen or seventeen 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 that were 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.
Hey everyone! Today I wanted to focus on a very important topic I think many teens, and adults shy away from, Mental Health. Mental health is one of the most important things ever. Mental health is something that we should be taught from a young age to deal with, but many people don't know what that is, or what that in tells. So I put together three apps that I feel could really help people with there mental health. Now these apps do not replace any professional health services you may be using, these are just apps, so if you want to use these apps, or talk to your mental health physician to see if any of these apps might be useful to you, then please do. The first app is "what's up" its a mental health app, that has strategies for coping in the moment, daily journaling, a mood tracker, and much more. The only thing is i wish it would be updated regularly. The second app is called "calm harm" and its used for people who self harm. This app has a password access system, and a completely anonymous account if wanted, or needed. I think this app could be useful for people who want to stop self harm, but need a little help, i think this app would be useful for counselors, and therapists to help anyone dealing with self harm. These two apps are completely free to use. The third, and final app I'm telling about is called "Fabulous" which isn't directly for mental health, but can be very useful for it. Its an app that helps motivate you, you can put reminders, exercise, do important tasks, and have set goals! There's also levels when you complete goals so you can unlock more things to use. There's some in app purchases which is why i said its not directly for mental health, because i feel all apps having to do with mental health should be completely free, although many aren't. These are the top three apps i would recommend, and the top three apps in each part having to do with mental health, and any kind of health. Thank you all for reading, tell next time. God bless from the bloggin Bre.
We're Partnering With The Mighty to Help People with Craniofacial Differences!
Rare Disease | The Mighty Partnership | FACES: The National Craniofacial Association
We're thrilled to announce a new partnership that will bring our resources in front ofThe Mighty's wide-reaching readership. We will now our own growing home page on The Mighty and appear on many stories on the site.
The Mighty is a story-based health community focused on improving the lives of people facing disease, disorder, mental illness and disability. More than half of Americans are facing serious health conditions or medical issues. They want more than information. They want to be inspired. The Mighty publishes real stories about real people facing real challenges.
Here’s an example of the kind of stories on The Mighty: Why I Believe People With Rare Diseases Are So Easily Forgotten
We encourage you tosubmit a storyto The Mighty and make your voice heard.
Understanding Unhealthy RelationshipsBy Bloggin Bre
Bre's bio: I'm Bre/Breanna. My age 17, 10th grade, I love Christian books, and I love J- 14 magazine, and girls world magazine, and my favorite subjects are ASL (American Sign Language) I love English, and i want to become a teacher and or ASL interpreter.
This month i wanted to focus on the question "What's is an unhealthy relationship?" I feel that can be a very scary thing for people to talk about, because its either to close to home for them, or its not close enough for them, or they just don't know what it is. I'm here to say these are the three unhealthy relationships to look out for, (there's many more, but for now three). They are "danger," "put downer," "watcher," these are the VERY important three I would recommend knowing about. The "danger," is one you never see coming, a sweet talker, always listens to you, gains your trust, (even if there's an age difference) then one day does a little mistake, some thing that annoyed you, or almost lost your trust or did. Since they are very good with words they can gain your trust back very easily. They apologize, and you move on, then some time later they do it again, or something very similar again. They apologize, it happens again, and again. You never set rules or boundaries, but once you do they get upset, or mad. They try to guilt you into thinking "what's wrong with you for doing this to our relationship?" In all reality its them trying to cross the boundaries, or break the rules, so they do it again, you second guess yourself thinking "who am I, that i would do this to this person?" When really that's the right thing to do, and if they truly care, respect, or love you in anyway they'd understand, and respect that, but they don't. There's the type where they demand no rules or boundaries, they say, "why do i need them? I didn't do anything to you, we don't need these," when they did, its a very manipulative tactic either way. They could get defensive like, "you really think we need these, well i don't think we do, we're fine doing what were doing," no your not, you don't like the way things are, and that's why you wanted to add these in the first place. So the three types of "danger," are guilt, demanding, defensive. The second type of unhealthy relationship that you should watch out for is "put downer," your more likely to notice these ones because they aren't shy about how they treat you, they tell you. They say something like, "you look really pretty in that dress, although you should have put your hair up, not down," see its a put down, and a pick up, most people don't even process this tell later, (kinda the point). Its mean, and insulting, they purposely see you, and do things like say hi, ask how your doing, then walk away in the middle of you talking. They do things like being nice one day, "hey i love your outfit, then, the next day say, why did you wear that ugly jacket with that hat, and purposely point it out to other people to make them laugh at you. So the three types of things to look for in a "put downer," is insults with compliments, nice one day, mean the next, start a conversation just to end it rudely. The third type of unhealthy relationship is the "watcher," they are hard to spot, but easy to be found when looking for. The "watcher," is someone who is a genuine person, (tell later). They are kind, caring, helping, then later you start to see a change. They go from them helping you too, you helping them, but instead of a good balance for each other (like in a healthy relationship) they keep taking, but don't seem to be giving anymore, no longer very nice, more moody, and not getting along as you guys once did for no apparent reason. An example of a "watcher," is "thanks for all you do," from both sides, then get in a fight, you both made up, and moved on. Then after knowing each other for longer and longer you start to see a pattern of you always needing to text them when they text you, but when you text them they don't answer tell days later. You are always being considerate of them, but when it comes to you, they don't care.They think you need to be more understanding to them. What you should look for in a "watcher," is someone who's inconsiderate, wants what you can give them, and who is never giving, but acts like they give you everything, when really they don't
Much love from the bloggin Bre. God bless. #nobullying #unhealthyrelationshipsarebullyingtoo
Meet an ordinary extra cool little guy with an extraordinary story who has learned to live many new and unique normals. People looking from the outside may question ordinary, but the people who know him see just Wes. Wes was born March 17, 2006 and yes he thinks it’s pretty cool that he has some Irish blood. He was born with a variety of diagnosed craniofacial anomalies, but is overall undiagnosed. Even though we don’t have an exact name for his condition, we do know we have a pretty awesome little guy. He has a fun personality and will tell it as it is. He has undergone a lot of surgeries, some are pretty big, but he will be the first to debunk any myths of it being easy because he knows or has been through so much. As a matter of fact, he might even tell you it is more difficult, because he knows too much. Knowing that surgery causes a lot of pain and a long, slow and sometimes complicated recovery doesn’t make him want to sign up for the next round.
When I ask him about friends in his class, he will lets me know he is friends with everyone. He is really close to his cousins and few other super cool kids who like to do super cool things he enjoys. He loves anything involving superheroes and anti heros (and he is quick to let me know there is a difference), Marvel and DC and Star Wars, but especially likes Lego Batman and Dead Pool. He could be offline Wikipedia of hero information. He is a building master, Lego’s and Minecraft. Just like any good superhero, he has awesome style. Year after year his school pictures he is sporting bow tie. Of course his favorite suit is a tuxedo, what else would you expect from a super spy, batman type super guy. He is very well traveled and while most of his travels are for medical reasons, we always make sure to squeeze in something fun and educational.
Wes is definitely a family guy. Our house can be a little crazy with 4 boys. Wes has two big brothers and one little brother. He is a great brother and shouldn't have any complaints, but then again they are typical brothers. He is such a sweet son. One of his best friends is his cousin who is only 2 months younger than him. They are little peas in a pod. After a medical trip, he always feels like he is home once he gets some cousin time.
Wes hates to be stared at and doesn’t always feel like explaining things to others, so we have decided to create a business card or life cardhe can carry with him and pass out if he feels inclined.
Wes' life card
Hi I'm aWESome. I don't like when people stare. It just not cool! Yes, I was born extraordinary, but in many ways I'm just an ordinary cool kid. My favorite game is Minecraft. I can tell you more than most will ever know about Marvel and Star Wars and lots of other awesome stuff. Summer is my favorite time of the year, so I can swim and sleep in. I like to hang out with my family and friends. I'm not crazy about school, but I earn my parents the honor kid bumper sticker.
Most importantly, I want everyone to just Choose Kind.
If you want to learn more read the book Wonder or check out my blog Wesweb.blogspot.com.
Gina, mom to Chase, Brandon, Wes, and Cooper "You cannot change the wind, you can however adjust your sail." http://wesweb.blogspot.com/
“I know you though we’ve never met
At least not yet my dear,
But soon we’ll be inseparable
As the day approaches near
I know when you are restless
And when your day is done
I feel your every movement
And relish in its fun
I know the day’s approaching
I can’t wait to embrace
The moment when I hold your hand
And kiss your tiny face
So see you soon my little one
I can’t wait for your birth
I’ll cry big tears and hold you tight
When I bring you into this earth.”
Pregancy@Terri Mlotek 1988
I always knew I wanted to be a mom! Growing up, all of my Barbie dolls were moms. Some were pregnant. Some already had babies. From an early age I knew that being a mom was my destiny.
I was privileged to have been present for several births prior to having my child. One in particular, was my sister in law’s. She had her two children naturally at home. It was such a wonderfully loving experience and I too had been going to see the same obstetrician who was very prominent in home births. I made the decision to follow in that path, and bring my daughter into a warm, family filled environment at home.
At 26 years old, on November 26, 1988, 3:16 a.m., with my whole family there, that dream finally came true! I had my daughter, Rena. I was a MOM! My baby was beautiful! She was mine! And she was here! What came next was a reality that wasn’t in my “mom” plans. Rena was born with facial anomalies. Most noticeably, a cleft lip and palate. I saw the looks on everyone’s faces before I had the first glance at Rena. I had asked the doctor what was wrong. He explained to me about the cleft lip and palate. My response was; “can they fix it?” He immediately say “yes!” That was all I needed to hear. It really didn’t matter to me at that point. I was a mom!!!!
The next few months were eye opening. We were first sent to Children’s Memorial Hospital, where we met with Plastic Surgeons who specialized in clefts. There were a few other children in the waiting room with their parents but to be honest, I didn’t really pay too much attention to them. I couldn’t even tell you what their children looked like? I was doting so much on my new baby, I could have been sitting there all alone.
When I handed my now few day old daughter off to the doctor’s aide, she blurted out to those of us in the room; “Oh, so we will have to do a number of surgeries on her head to correct the Craniosynostosis (a condition where the soft spots of the skull are fused at birth) and Hypertelerism (where the eyes are too far apart).” I remember the room spinning and getting really loud. I looked at the aide, who was staring at my daughter and I said, “We are here for her lip.” That’s when the aide realized that we had no idea about the other issues. We hadn’t even seen a doctor yet. She immediately rushed out of the room and brought in the plastic surgeon who sat with us to discuss what was now our new normal.
I do remember after leaving the office, I cried. Those were the first tears I shed out of fear. I recall a sense of rage and sorrow. Maybe not rage, but I was certainly looking for blame. God? Spouse? Environment? Who could I yell at???
This was not fair!!!
As the days went on, I settled into being a mom. That was so much more important to me than anything else. But as friends started to stop by and show congratulation, I felt the pity. I saw the look of despair and sadness on their faces. They tried to hide it. But I saw it. Some of them didn’t even want to hold Rena. What were they afraid of I thought? She was a baby! She wasn’t going to give them any disease or anything. At some point I had requested no more visitors. I was going to just enjoy my new found status as mommy, alone.
Just to be clear, my husband at the time must have felt his own pain. But we never discussed much. We had our own share of problems and this did not strengthen our bond.
As time went on, we learned about the surgeries Rena needed. There were many.
Each in different stages of life. The first was when she was just a few weeks old. That was to close her lip. As she grew, they repaired parts of her palate. At 5 months, she endured her first major surgery. That was for the craniosynostosis.
I remember the night before, staring at my beautiful baby and wondering what I could possibly do to protect her from this. Feeling such guilt that I somehow did this to her. That I had caused her all of this angst and pain. What kind of parent was I?
The next day was the longest day of my life. 9 hours of surgery. Constant reports from the nurse. But it was over. They wheeled this little child, all wrapped in bandages into the ICU, where I spent the next 5 days sharing space with other parents whose children just had major surgery. The dunny yet sad part was that none of them had the same surgery as Rena. So discussing anything with them felt wrong. We had a kindship of sorts. Of course we were bonded in some ways. But I still felt very alone.
When I finally took Rena home, she was as smiley as if nothing ever happened to her. Her head was still very swollen. She had a scar from ear to ear. But this little bundle of joy was my reason for living. And so, she taught me resilience.
Even through all her surgeries, she rarely cried. Not that I remember anyway. Maybe it’s because in between everything, she was always happy.
I remember one morning waking up in a daze. I’d had a dream that the entire surgery scenario was a dream. So when I woke up, I half expected that I would walk into Rena’s room and there would be this “perfect” little child. No scars. No issues. I hated myself for even thinking that! What was perfect anyway? This was our perfect! As imperfect as it was. It was all ours.
When Rena was 18 months old, her father and I split. There was only so much I could maintain and Rena was it. I spent my focus on being the best mom in the world for her. So much so, that I put my own needs on the back burner. I lost a lot of friends in the process. But it was very difficult to maintain friendships with people who didn’t understand what it was like to have a child with a difference. It wasn’t like I could just call them up and complain. What would they do?
There wasn’t any internet groups that I could just long onto like there are today. And we didn’t even have a computer back then. I was very alone and isolated.
The one positive light that came out of that dark situation, was that Rena and I had a bond that was unbreakable. We were in essence raising each other from the ground up. Piece by piece. As she was being put back together, so was I. And I didn’t even know that I was broken.
We hadn’t even gotten into preschool yet, but there was this “aha” moment when I realized I was a force that had to be reckoned with. That I was going to protect this child with everything I had in my power. That was my destiny.
Terri will be writing an article once a week, so stay tuned. She has also agreed to share her email in case you want to connect with her. Peenut1220@aol.com
My Sister's Lessons
September 7, 2017
By Maddie Adams
We don't look alike, we are fraternal, and yes, we are best friends! I've been to countless appointments with Liz and have seen her endure countless operations and her courage and bravery never fails to amaze me.
The way she handles questions, comments, and stares from strangers with grace and intelligence blows me away.
Liz and I are really similar in a lot of ways We both love music, going to concerts, theater, reading, and hanging out with our friends. We have the same dorky sense of humor and make each other laugh constantly!
Liz has taught me to be myself, to love who I am, and has shown me that if you have courage, you can handle anything life throws at you!
Fatherhood: Part 3
September 11, 2017
By Patrick Rhodes
Kites rise highest against the wind - not with it
Jack is five now, and he is as the saying goes, all boy, a 4-foot-tall bundle of energy excitement and joy. My son is one of the happiest children I know. He loves to read, loves school, loves his Mommy and Daddy—Although now, much to my chagrin, he is calling me Dad more and Daddy less—loves Legos and Star Wars, loves to swim, even with the trach, and more importantly he loves Jesus.
I got over my anger with God and we joined Father Ron’s church. Every day Ashley and I see the unique joys of being Jack’s parents. While I wish I could say that after the first year of his life everything has been perfect, I can’t. We have had ups and downs, setbacks, and joys. When he was two, we found out he had a dead spot on his brain from pressing against his skull; at that time the doctors couldn’t tell us if Jack would function intellectually at normal level or not— this was a major setback. At three, we had him tested for cognitive development and he was functioning at the level expected of a six-year-old—major joy!
Being a parent is hard, there is no manual for it. Being a parent of a child with medical needs is even harder. But I have come to understand that we appreciate the things we with struggle the most, or work the hardest for, more than what comes easiest to us. Maybe that is why I love Jack so much, seeing his struggle has really and truly made me appreciate him. I also know now that when we are faced with great challenges we need support, people who know what we are going through, and that there is a gamut of emotions that parents face when they find out that their child is “sick,” but those emotions are normal. So, if you are struggling to understand why this has happened to your child, know you are not alone, there are people who have walked in your shoes, and there are people who care about you. Talk to them. Don’t try to be Superman and handle it all yourself.
I still don’t know why God chose not to answer our prayers and spare Jack from Crouzons.
Maybe it’s because as he walks off the 18th green at August National, after sinking a putt to win the Masters. When Jim Nance asks how he dealt with the pressure, Jack will smile and say this wasn’t pressure, try learning to swim with trach—that’s pressure!
Or, perhaps one day when Jack is President of the United States a reporter will ask him how he handles the stress of the job Jack will say this isn’t stressful, try wearing the RED System.
Or maybe just maybe when Jack is a dad and his child say dad I don’t know how to go on, Jack will smile with love and say let me give you some advice. I don’t know where I’ll be at that moment, but I know will be proud of him!
let little things go
September 6, 2017
By Liz Adams
Throughout my 14 years of living with Goldenhar Syndrome I have faced many challenges, but I truly believe that it was because of these challenges I am the person I am today. Living with this syndrome has made me stronger and I would like to think it has made me a better person. Because I have experienced judgement and unkindness I try to be kind to everyone and not quick to judge, knowing what it feels like. I have also learned the true meaning of self love. Becoming a young woman I struggled with this but trust me the whole “ beauty comes from within” thing is in fact true and should be taught more often.
One of the challenges I have had to face is staring. Most of us don’t have to worry about being followed by kids in the mall because they want to stare at you, but over time I’ve learned not to let these little incidents impact me. I would used to hide behind my Mom embarrassed and confused but I have noticed if you just ignore it then people usually stop. Once they see me joking around with my sister they realize that I’m not so different from them.
Something that has helped me through all of this is my faith. I believe that everything happens for a reason and somewhere along this crazy roller coaster there is a plan. Thinking about that helps me get through my struggles and see the bigger picture. Having faith in that plan helps me get through tough obstacles like surgeries or little things like routine doctor visits. Another contributing factor is my family. My mother has definitely helped me to become the woman that I am today and never treated me any different than my sister.
My sister is literally my rock and my bestest friend, with her I can be totally crazy and enjoy my teen years to the fullest.
And also my dad has helped me tremendously. Whether it was staying with me while I was in the NICU for several months or giving me advice on what I should wear to my first school dance, he has always been there and I’m so grateful for all three of them.
My life has certainly not been easy but I has been pretty great! I’ve experienced many joyful moments and I’m currently very happy with things. I’ve learned to go with the flow and to let little things go. I’m not mad that I have this syndrome but it does get frustrating sometimes. When I do get stressed out I remind myself that we are all human
I guess what I’m trying to say is that all humans are awesome. All shapes and sizes are beautiful and should be appreciated. And that life is a very incredible thing if you make it. To anyone reading this who is going through something like I am, please know that you aren’t alone. Just because we may look different does not mean our souls are any different. We can still be happy and experience a wonderful life with joyous memories. So try to find the good in life because trust me, it's in there!
Different is Beautiful
September 1, 2017
Hi everyone! So this month is all about acceptance, because its Craniofacial acceptance month!
I wanted to share that a time when i wasn't accepted was when i was bullied for being different.
It didn't feel good, but I learned from that experience that everyone deserves to be accepted even if there different, remember different is beautiful!
The world would be very boring if we were all the same. God created us to be different, and to love everyone.
My advice, remember accepting is caring, and showing love to others, so please always choose kindness with your words, actions, and thoughts.
I hope you all remember to accept everyone with craniofacial differences, and everyone in this world matters, and deserves to be accepted. Acceptance means to me the importance of always including everyone, and never being mean to others because they are different from you.
I think we are all special and made to inspire, so do your part and accept today! (no pun intended).
Sending prayers your way with the bloggin bre!
Part 2: Fatherhood
August 31, 2017
By Patrick Rhodes
“Never confuse a single defeat with a final defeat”
—F. Scott Fitzgerald
Broken, battered, and scared my family started our life together.
We had endured weeks of struggle in the hospital, but this time we left the NICU with Jack. For the first few months we had him home there were times when I felt more like Jack’s nurse than his father. Our nightly routine involved all the normal things like bathing him, feeding him, and loving him. Despite all the normal routines, there was another component--the medical component. Every night we had to clean Jack’s stoma, the area around his trach and change his trach ties. After that, all of his medical equipment, (heart monitors, breathing tubes, and other devices), had to be hooked up to him. In fact, Jack needed so much nightly medical attention we moved his crib out of his room and into our bedroom for the first year and half of his life.
During that first year, something else happened, healing started.
Physically Jack began to stabilize and slowly I, with help of some special people, started the process of recovering from my emotional and spiritual wounds. While he was in Charleston Jack had at had several surgeries. However, in March 2012 we were preparing for his first major surgery. Jack needed a cranial vault expansion. A week before his surgery, one of Ashley’s coworkers, (whose husband is an Anglican priest,) approached Ashley about having Jack baptized. While I was still very angry at God and personally wanted no part in Church, I knew how much this meant to Ashley. So I said those two little words all husbands learn to say when they really have no interest in doing something: “Yes dear." We had Jack baptized on Wednesday night in a private service with only a few of our close friends present.
During the service, the love and compassion that Father Ron showed Jack, left a slight crack in the hard stone wall I had built around my heart,
I didn’t know it then, but in few days he would offer some words of guidance that would bring everything I was dealing with into focus,. And, ultimately, would help me move past my emotional wounds. To this day, I am eternally grateful that God placed Ron Greiser in our lives.
The Saturday after Jack’s surgery Father Ron came to see us in the hospital. In the waiting room we sat and talked, while our wives visited my little man. We talked about sports, what it means to be a father, and life in general. Eventually, our wives came out of the ICU and it was our turn to go in. Looking down at Jack Father Ron asked me how I was. I still remember our conversation to this day. I told him I was pissed, pissed at God, at life, and this sucks: watching your child go through medical procedure after medical procedure.
His word was, “Its okay to be mad at God, in fact you can be mad at him and still love. After all you get mad at Ashley, don’t you? But you still love her right?” His next words perfectly explained to me exactly what I was dealing with, yet somehow didn’t quite understand, “You're grieving," he told me, " not the physical loss of your child, but, of the dreams you had for him and everything your dealing with is part of that process.” Until that moment I struggled not just with my feelings but also, with why I had them—It never occurred to me think that I was grieving.
Jack quickly recovered from his surgery and we took him home again, While I wish I could say that from the moment Father Ron and I had our conversation that I too was made whole, that would be a lie. However, little by little, day by day, I began to deal with, and face my anger. I understood where it was coming from and how to move past it. In my anger, all I could see were things Jack would never be able to do. But now I was beginning to see that, while my life with Jack was going to be different than I had planned, there were still going to be some pretty amazing things in our lives together. In fact, one of those amazing things would happen in about six weeks.
As a parent of a child with a craniofacial difference, one of the things you fear most is how people will treat your child. Because of everything Father Ron had done for us, one evening Ashley suggested that we should take Jack to Ron’s church and let him see how Jack was doing. “Yes dear”came out of my mouth again. While, I wasn’t quite as confused and angry, I wasn’t quite ready for church. I held Jack all through the sermon and afterwards a young girl, just in elementary school, came over, and asked to hold Jack, the little baby that the congregation had herd so much about.
The love, kindness, and genuine affection with which she held Jack moved me in ways I can’t explain; to see someone else love my child, who looks so different, gave me hope.
A New Kind of Normal
September 5, 2017
By Jackie Adams
It came as a total surprise that there was a Baby A and a Baby B. It was a total and fabulous surprise. There were ultrasounds every month that showed two normal growing babies. It progressed to 35 weeks and a “c section” and the anesthesiologist were my new best friends. That was the day that changed our lives forever. Our lives and are family became complete. That day also brought us in touch with more hospitals and doctors than I ever imagined I would meet, with little people in my life.
Twin daughters Madeline and Elizabeth were born that chilly Fall day. Madeline was born with a heart murmur and Elizabeth was born with Goldenhar Syndrome. I delivered in a hospital that had no Neonatal Intensive Care Unit (NICU), so Maddie and I stay in the hospital where I delivered our twins. Liz was transferred across town to the hospital that had the NICU, at least we were in same town for a few days. 8 days later Liz was transferred to University Hospital-Upstate NY in Syracuse, 90 miles away from our home. Dad became a resident at the local Ronald McDonald house (for the next 108 days) and I stayed at home with Maddie and tried to resume working. Elizabeth had a jaw distraction early on a scary looking device that would help her jaw bone extend further than it currently was. She had her tongue surgically sewed to her lip to give her a better quality of air flow. She was in a drug induced coma for 20 days. It was 20 days that we ran on autopilot. She had to have a feeding tube. Another scary foreign object to contend with in my fragile little angel who struggled almost every day for her first 3 months of her life.
Our friends, family and faith gave us the strength to get through each day. And literally some days it was a struggle to look at the clock. What I did to overcome that feeling was to give myself benchmarks and get through one hour at a time. I was not used to staying home, not having my own money to spend or my own independence. It was a little overwhelming.
When Liz got to come home and be with her twin sister, our lives changed yet again. It felt like we had a revolving door that was open to a number of great therapists. My schedule that was once filled with professional sales appts was now filled with therapists, drs and tv to entertain my darlings. My life was not my own! One word of advice to anyone who has heard this diagnosis, hang in there. Don't be hard on yourself. Don't set your expectations too high. Get through your day one hour or one half hour at a time. It WILL get better. It will be good again. You may be looking at things now and think your lives will ever be normal again. Guess what? It will be. It will be a new kind of normal but it will be normal. You will have great times of happiness. A few of extreme anxiousness. Some of anger or frustration. But document it. The good, the bad and the ugly. Your kids will love to see it later. The pictures, take a million. And print them. It will validate where you came from and how much you have accomplished. You won't be sorry. You may not want to look at the pictures or stories now but trust me your child will at some point. It has done our children well to see how things were and how they have evolved. As they become grow and change these memories will seem like a lifetime away but they have made you all who you are and they will make your stronger. Talk about it. There are groups that can help. FACES put us in touch with some great people and our family is here for you! Sharing our stories and listening to yours. God has been good to me and I am grateful.
Warriors have Scars
By Shane Oswalt
I like to consider myself as a “jack of all trades” kind of person. Since I began working at the age of sixteen. I’ve worked in many occupations I’ve held positions from cooking at Wendy’s to spending some time as a corrections officer and today I am a commercial lines account manager for an insurance agency. Though the one area that I have become an expert in is living with craniosynostosis. The correct term is unilateral craniosynostosis for the last 37 years.
My many cranio-surgeries have consisted of two craniosynostosis surgeries, a cleft palate repair, ear penning, and most recently, an eye lid lift, and fat injections. My first craniosynostosis surgery to correct my case of unilateral craniosynostosis, that included a cleft lip repair was in 1982, and my second craniosynostosis surgery was in 1991. My first cranio involved using some ribs from my right side that were crushed up, and molded into my new skull. My second cranio surgery involved the construction of a new eye socket, and once again, the rebuilding of the right side of my face. The last cranio-surgery was just a few years ago at the age of 34. I had fat injections, an eyelid lift, a dermoid removed from my eye, and some revision to the scar that runs along the top of my head from left ear to right ear.
Growing up as a cranio-kid was no different than any other child. However, I did have limitations. Some limitations included not playing contact sports such as football and wrestling. But, this did not stop me from horseplay with my brothers. We just had to be cautious about my head. I rode bicycles without a helmet like most other kids living in the 80's and 90's. Thankfully the skull is resilient to most trauma, because I’ve been dumped on my head, and even had a bicycle that went airborne land on my forehead 2-years after my second cranio-surgery (that’s another story). Not being allowed to participate in contact sports did not stop me from doing my part though. I held positions on many of my middle school and high school sports teams as a student trainer. These positions still enabled me to participate on sports teams with my classmates. My most remembered time was when my high school football team won our third consecutive championship.
First appearances are everything. Growing up and living with facial deformities is not easy to do. I remember occasions I was picked last for school sports such as kickball, or dodgeball, not because of my athletic abilities, but because of my appearance. There were times I was called some pretty awful names by kids just because of how I looked. Kids are kids, and can be mean. Even some adults are too. Adults usually just stare like I had food stuck to my lip. If I had a nickel every time I heard the questions “how did you get that scar on your head”, or “what happened to your head” I could retire today and live a very satisfying lifestyle. I’m not sure if it’s curiosity or stupidity for people that make them ask such hurtful questions. Just because I’ve gotten older does not stop the questions from occurring; I use this as an opportunity to educate people on craniosynostosis. When I was younger I tried to keep my hair long enough to cover my scar, but as I’ve gotten older, I let this baby show! I see a scar as sign of survival, not defeat! Warriors have battle scars.
Even as an adult I feel self-conscious about my facial appearance because of craniosynostosis. Ever hear the saying “I’m not where I want to be, but think God that I’m not where I used to be”, the same goes for craniosynostosis surgery. I am blessed to have had skilled handed surgeons such as Bauman Guyeron, my original craniofacial surgeon, and Atif Collins, my ocularplastic surgeon, both from University Hospitals in Cleveland Ohio to perform what I would call miracles on my skull and eyes. I know that I am not going to win some beauty contest, but hey, I’m okay with that. I am who I am. Having a full-time job that demands a lot of mental work, a full-time college student, husband, and father, I have no time in my life for shallow people who cannot see past what I consider my physical flaws.
Most parents probably want to know what the future looks like for their kids, in the form of their offspring, intellect, and such. Well, I have one daughter and she has no facial flaws that my untrained eye can see. She has been told she needs braces by an orthodontist, but cosmetically she looks fine. I have three brothers, and a half-brother. All have no seen facial deformities either. As far as intellect, I am currently enrolled at Bethel University, pursing my bachelor degree in Organizational Leadership with concentration in Healthcare Management. My cumulative GPA is 3.97. and my IQ tests have always been above average. So, just because your child is handed a diagnosis, don’t let this diagnosis ruin your child’s life. Let them live a normal childhood!
To the young people who might read this story, do not feel ashamed of what your appearance is. As long as you work hard, have determination, you will succeed!
Having a child with facial deformities is not going to be easy. I think it is important to remind children to always look for the inner beauty that a person has, and not the outside appearance.
Remember a scar is a sign of a warrior who fought a battle and won!
Fatherhood: Part One
August 25, 2017
By Patrick Rhodes
“The world breaks everyone, and afterward,
some are strong at the broken places.”
Being a father means protecting your family—fixing the problems they face—being Superman. Or at least that’s what I thought until the spring of 2011.
Sooner or later, all parents find out we can’t fix everything that happens to our children—for most of us , the realization that we aren’t Superman, comes slowly and over time: an illness here, a broken heart there, next thing you know your child is asking questions or dealing with hurts for which you have no answer. In that moment, when your face to face with the fact that, no matter how much you want to take the hurt away, to make your baby better, you realize, I am powerless to help, that’s when you really begin to love.
In March of 2011, my wife Ashley and I were expecting our son, Jack. Ashley was born with Crouzon’s syndrome—as a result we knew there was a fifty-fifty chance Jack would have it. In order to give him the best care possible, we decided to have amniocenteses done. The test would tell us if Jack had Crouzon’s, which would determine where Jack needed to be born; our local hospital has limited Neonatal Intensive Care Unit services. It was against this background that my world, my control, my belief that I could handle it all, began to crumble.
The results of the amino had come back. Jack had tested positive for Crouzon’s syndrome.
Our fears had come true. You see we feared having a child with Crouzon’s. In fact, we feared the syndrome so much we were planning to adopt when we found out Ashley was pregnant. This should have been my first clue that all my efforts to control the world, to make sure my family was safe, would be in vain.
But, I am a slow learner. After hearing the news that Jack had Crouzon’s, I remember a sense of rage welling up inside me; rage that I had to see my wife in such pain, (Ashley had a tremendous sense of guilt over passing the syndrome on to Jack), rage that I was helpless to take away her pain, rage that Jack would have to endure surgeries, and that his childhood would be marred by illness. Thought most of all, I felt rage at my powerlessness: me the father, the provider, the protector could do nothing to end my families’ pain—everything was out of my hands. Months went by and as Ashley’s belly and my son grew; so too did my anger and frustration. Sure, there were some happy moments, the first time I felt Jack kick for example, but, mostly I remember being scared and afraid. We did all the normal things: had baby showers, went to OBGYN appointments, picked out Jack’s nursery decorations, read What to Expect When You’re Expecting, and spent time thinking about what our son would be like and in some small ways my anger abated.
And as, time went by I again tried with supreme futility to reassert my control.
On Saturday morning July 23rd 2011, Jack was born. I took one look at him and fell hopelessly and deeply in love with my son.
Immediately the doctors took him from Ashley and me, he had to go to the NICU. The rage began to well. In that moment all of my control was gone. I realized how completely and totally powerless I was to help Jack. Outwardly I was calm, but my soul screamed with rage, anger, resentment, frustration and pain! My son less than an hour old was not dependent on me for life, but he was reliant on doctors and nurses and machines; me the father, the protector, had been replaced already. In Psalm 23 David writes “Even though I walk through the valley of the shadow of death, I will fear no evil.” I don’t know what David’s valley of death looked like, but for me this part of the 23rd Psalm will always and forever make me think of the NICU at MUSC. My anger started morphing into fear.
For the first time, I realized we might not bring our baby home. If I had started out my journey into fatherhood as Superman, a hero who could do it all, I was now the Incredible Hulk, a giant green rage monster. One of our greatest fears going into Jack’s birth was that he would require a tracheostomy, Ashley prayed and prayed that we could bring our baby home without a trach. Jack’s airways were too small for him to breathe on his own. He would need a trach to come home.
Knowing then, that we had no choice, that I had no power, and that I had no control, I turned my child over to a surgeon for the first time. He wasn’t even a month old yet and he was having surgery. I mourned for him, not a mourning for the loss of life, but instead, I grieved for his loss of normality. From this moment on, Jack would be that kid, the different one, the one that stood out, the one that didn’t quite fit the mold. I was beginning to become an expert at anger. For the most part, I turned it inside. However when an occasion arose where I could release it on the doctors, I never hesitated. The anger was going away but a type of numbness was replacing it. It was becoming hard for me to truly feel anything.
On top of dealing with all the emotions that come flooding at you in a situation like this, I was trying to figure out how to be father to child with a trach, who needed more medical care than I knew how to give. At this moment, I was more confused, more lost than I have ever been before, or since. All I could do was just live one second, one minute, one hour, one day, and one week at a time. Pretty soon the seconds, minutes, hours and days added up to six weeks and we took our baby home to face the world. Still scared and angry we drove home with Jack. Neither of us knew what to expect. We would take him home, love him, watch him grow, and hope that when the sun came up the next morning, our son was still alive. I was still angry; still confused; still helpless but, at least we were home, and could hold Jack and rock him in our chair in our living room. While I had stopped praying (I saw little utility in it; after all God hadn’t answered any of our prayers yet I thought), I still spoke with Him.
Mostly in quiet rage and unspoken anger I questioned Him: why had He done this to my family. Why could we be the perfect normal family? Why had he broken us so completely?
Read the continuation next week.
From my Heart to Yours: A letter to Parents of Cranio Kids…
By Rasheera Dopson
So let me start off and say Relax… breathe… everything is going to be okay. Often times I see a lot of parents who are weighed down with anxieties and fear about their child’s future. And although it would seem like the biggest fear would be medically related, surprisingly a lot of parents fear the stigma that is attached to their child’s craniofacial condition—how will be they be treated by the world. Well although I can’t promise you that everyone will be nice or kind, I can give you hope. Hope that everything will be okay. Your child’s difference won’t harm them, but just like my mom and I discovered it can be the greatest gift in your life.
From my heart to yours here are some tips in walking out this craniofacial journey with your loved one:
Never stop being your child’s biggest Advocate. This is my favorite. My mom was my biggest Advocate, at home, at school, in the hospitals. Don’t let anyone put limits on your child. If you know they can achieve it, let them fly. Do whatever is necessary to help them get to that point. Sometimes that means being the annoying parent at school, or getting the doctor to listen to your concerns. This walk isn’t for the faint at heart and your child needs you to not only be strong for them, but to be strong with them. Your child’s confidence and their success starts at home! My mom always let me know that I could do anything and that my disability and difference was not a hindrance or a crutch but merely an asset that would help me be the best version of myself.
Drown out the negativity! It doesn’t matter what the world may think or say it only matter’s what they believe about themselves. Help build your child’s self-esteem. Allow them to realize that their difference is only a fraction of who they are. When you don’t make a big deal out of their difference neither will they. This also applies to surgeries and procedures… when you are calm, they are calm. I looked to my mom to be my rock and even when things got painful and hard she never faltered; because of her assurance I was able to endure even the most painful of medical procedures.
There’s always a teaching moment. Whether your child is starting a new grade or going to a new school, there’s always a time to educate others on facial differences. Don’t look at it as an inconvenience look at it as an opportunity to spread more kindness and awareness. On the outside craniofacial conditions can be quite intimidating—the diagnosis, the appearance of it all, but it doesn’t have to be if you are willing to educate.
Be Kind to your feelings, be Kind to your child’s feelings. Everything isn’t rosy all the time. Nevertheless, keep every battle in perspective. The end result will always be to live a healthier functional life and sometimes that means taking a break or stepping away. You’re not a bad parent if you choose to opt out of a surgery or procedure (if it’s not crucial) and your child isn’t any less strong if they get weak. You know how much your family can handle and you know what’s best for your child.
These are just a few things I have come to learn by walking this journey with my mom. I am blessed to have come so far in life, but I know I would not be where I am if I didn’t have my mom by my side. She was and still is my biggest supporter. I applaud every parent who has a craniofacial child because the road isn’t easy nevertheless, I am confident that in keeping the above principles in mind your child will grow up to live a normal, healthy and successful life because I am living a normal, healthy and successful life!
Back to school: Advice, tips, and how to have fun with everything you do!
August 16, 2017
Bre's bio: I'm Bre/Breanna. My age 17, 10th grade, I love Christian books, and I love J- 14 magazine, and girls world magazine, and my favorite subjects are ASL (American Sign Language) I love English, and i want to become a teacher and or ASL interpreter.
Hello everyone, first thing thank you for taking time to read this article, second thing, thank you Sarah McCune for giving me this opportunity to write this. Sarah told me that some of you new coming middle schoolers are afraid of being bullied for your looks.
So i wanted to share this advice to you all, to hopefully help you feel a little better about going into middle school. There's going to be people in your life who are going to be kind, there's going to be people in your life who are going to be mean, and there's going to be people who play different roles in your life, and most of the time the most important roles are the people you surround yourself with.
Please be aware that there will be people who talk behind your back, and people who will give mean looks, but be strong, and have a good circle of friends who don't care about what you look like, but love you for who you are, and yes there will be drama, but true friends will stand by you, and be there for you in hard times, and good ones.
Don"t ignore the haters, know that you have them, and face them with a smile, always have grace, but don't be there friend. Its good to know you have haters, because you know your doing something right.
Ignore what they say, and you'll be okay.
12 tips for back to school:
1. Always have your electronics charged for school. (Your phone, and laptop, or Ipad from the school)
. 2. Do your homework when you get home from school. (Take a break after 30 minutes, get a snack then go back.)
3. Always have one day a week to relax. (no homework, i take Sunday off so I'm ready for Monday.)
4. Have a music playlist. ( happy music will help you have a positive attitude towards homework or school. Upbeat or energetic will help you have Energy to stay awake and focus on your school or homework.)
5. Be over prepared for school! (I am. I always get school supplies throughout the year to save for the new school year, i also go during summer with friends to make the experience more fun.)
6.have a lunch friend group. (Even if there not in your grade as long as you have a friend during lunch it helps a lot. Plus they can save you a spot in the lunch line, or a walking buddy from class to lunch.)
7. Don't listen to gossip. ( i know its hard, to ignore, or say hey stop that, or defend your friend, but it will help you in the long run.)
8. Be kind. (No matter what happens be kind, don't lose your temper, its better to always be kind.)
9. Always have someone you can talk to about anything. (Family, friends, teachers, pastors, etc.)
10. Be happy! (I know it can get hard having piles of homework, and friendship problems, but always be happy, maybe something like a favorite candy, Bible verse, song, show, book, or something can make you smile, do it, or read it, watch it, or eat it. Whatever works.)
11. Have a routine. (Whether that is once a week watching your favorite show, or a at home spa day once a month, or reading a page of your favorite book every night, or doing a devotional, or reading your Bible every day.)
12. Live your life to the fullest! (Join a club, get a fun new app, listen to the song everyone is talking about, join an organization to give back, help your friends and family, trust that God has a path for you, because he loves you.
Back to school, How to have fun with everything you do: Be kind, be loving, be caring, forget what the haters say, but remember you have them. Thank your family and friends, for all that they do, be ready because your brand new to the world of middle school, and your going to do amazing, you look beautiful (or handsome) don't let no one take away your smile, stay brave. Enjoy every day, be thankful because the bad days just help you be thankful for the good ones ahead. Dance in the rain! Its fun.
International Study of Genetic Syndromes that Include Facial Abnormalities
June 12, 2014
FACES is so excited about this new study that is to begin immediately and we encourage all of our families with members having craniofacial disorders to participate. This international study is being carried out to better characterize genetic syndromes that include facial abnormalities. The cornerstone of this study is building a database of special three-dimensional (3D) facial photographs of people with different craniofacial syndromes that can be used to precisely measure and define facial abnormalities and understand the underlying biological problems. This will become part of the National Institutes of Health “FaceBase" database (https://www.facebase.org/), and will be available to assist other qualified scientists who are working to better understand these syndromes. Additionally, this syndrome database will be used to help develop a computerized system to aid physicians in diagnosing these syndromes in the clinic.
The initial phases of study enrollment will be carried out at patient group meetings, which the team will attend if invited. Accordingly, they are building bridges with as many patient groups as possible. If you or your child joins the study, they will then collect some information, they may collect some relevant medical records, and they will take a 3D photograph, which will provide computerized information about the shape of your/his/her face. Total participation time is about 10-15 minutes.
This study is funded by the National Institutes of Health and has been approved by the Colorado Multiple Institutional Review Board. We hope you and your group will consider taking part.
To become a part or to invite the researchers to your group meetings or just to ask more questions, please contact: Richard A. Spritz, M.D., Professor and Director, Human Medical Genetics and Genomics Program, University of Colorado School of Medicine by email at: Richard.Spritz@ucdenver.edu.
Hello, my name is LaTonya and I am a single mother to a very special little girl named Lola who was born with a rare condition called Apert Syndrome. Lola is a fighter; she has undergone three major surgeries (skull, stomach and hands). As for Lola’s case, she was born with type III hands, meaning all of her fingers were fused including her thumbs and she has webbed [fused together] toes. Her skull also closed prematurely not allowing growth for her brain. Lola still faces innumerable surgeries to come in the future. With this syndrome, Lola is under the care of several specialists. She has six surgeons, four doctors, and three therapists.
Last year just before Mother’s Day, a friend informed me that there was an image of Lola with very harsh comments plastered across several social media sites. People called her horrible names and even compared her to a dog. The day after Mother's Day, my sister, Valarie Thompson and I created Lola's Voice Facebook and Twitter page. Lola’s story has gained the attention of many supporters worldwide: from the UK, Australia, Germany, Canada, all across the USA, and to the troops in Afghanistan! Lola's Voice is an anti-bullying campaign aimed at stomping out bullying while educating the public about those with disabilities and the challenges they face.
We are encouraging people to STEP UP AND SPEAK OUT AGAINST BULLYING. I thank God for the strength to endure everything that comes our way. To conclude, Lola is my hero and the hero of many others.
We would like to thank FACES and all the organizations that make Lola’s medical trips possible.
Living with Treacher Collins: A Brother's Perspective
By Eli Bibler
March 15, 2013
Would you be scared if you were born with a birth defect? Would you be sad if people stared at you when you went places? What if it was your face that made you look different from everyone else? Well this is what it’s like for my little brother Ian.
My brother Ian was born with Treacher Collins Syndrome eight years ago. Treacher Collins is a facial birth defect. Treacher Collins is so rare that it is found in only 1 out of 50,000 babies. In Maryland where we were born, the doctor said there were only three other children with Treacher Collins in the entire state. The hospital pediatrician actually had to “Google” Ian’s symptoms after he was delivered. That’s like being the only kid in the city of Jacksonville with blonde hair and your doctor has only read about children with blonde hair! Pretty unimaginable, don’t you think?
The physical features of Treacher Collins include downward slanting eyes, a small lower jaw, lack of eyelids, high palate, malformed ears and conductive hearing loss. The eyes are often referred to as “sad-eyes.” The small jaw meant that he could not breathe well enough on his own nor could he eat on his own. And since Ian’s ears are really only little lobes, he is considered profoundly hearing impaired or deaf without a hearing device.
If all of this medical stuff sounds complicated, you are right, it is! Ian has had 17 surgeries at three nationally recognized hospitals but most of them in Cincinnati, Ohio, where my parents found an amazing surgeon. This smart and talented doctor has helped regrow and form my brother’s jaw two times already in his short life. With these surgeries, Ian is in extreme pain, needs a feeding tube to eat, and has lots of swelling, which takes a few weeks to go down. Remember, Ian is only 8 and has about ten to twelve more years of these necessary surgeries.
Being Ian’s big brother is, well I’m not sure. For me, all I see is my little brother Ian with long surfer hair who tries to karate chop and kick me all the time. So at home, being his brother is easy. Yet, when we are in public I see other people, mainly kids staring and pointing at Ian’s face. Sometimes they even say rude and mean things to him. When I read the book Wonder, I knew just how Auggie’s big sister, Vi , felt. Yet, I realized how sad and frustrating it was for Auggie too.
When you have a family member with a birth defect it can be hard, but most days it’s okay. I know God has given Ian so much courage and a great personality to be able to live with Treacher Collins. But Ian isn’t the only one living with Treacher Collins, my mom is, my dad is, my grandparents are and so am I.
We are so Thankful for FACES
August 17, 2013
Bailie was born in November of 1996 with a very severe bi-lateral cleft lip and palate. We live in a small community that is two and a half hours from any city or doctors to care for her. Over the years our medical expenses just kept adding up, so in 2003 I started “googling” (is that even a word) for ways to help with expenses for this type of issue.
That is when wonderful FACES: The National Craniofacial Association appeared before me. We immediately filled out the application. This organization has helped us so much over the years, and I cannot even imagine how high our credit card bill would be without them. They have allowed us to travel to Denver for Bailie's appointments without having the feeling of, "Ugh, how are we going to pay for another trip to the doctors!" Because we live so far away, we have to use hotels quite often for early morning surgeries, and FACES has been a huge help with that as well.
We are so thankful for FACES!
Traci, Bailie's Mom