Dear Hollywood, My Facial Difference Doesn't Make Me a Villain

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Dear Hollywood,

As I sat waiting for my car to be repaired today, a well-known scene played out in front of me. The company’s TV was playing “The Dark Knight” in the waiting room in which I was sitting. Glancing up at the screen, I watched the big unveiling of Two-Face‘s shocking facial features.

If you’ve never watched this particular movie, Two-Face’s name is pretty self-explanatory. His face is divided in two halves: one side is “normal” while the other side is quite the opposite. If he walked into a room full of strangers, he’s the one everyone would stop and stare at… a familiar experience for me.

Although he’s a fictional character, the name Two-Face is like nails on a chalkboard to my ears. Like Two-Face, my face is divided in half. In my case, however, I have a birthmark that’s purple in tone (a port-wine stain) covering my left cheek. As a child, a classmate used this fictional character’s name like a weapon against me. To this day, I can recall exactly where I stood in my elementary school cafeteria when he used those hurtful words to describe my 7-year-old self.

Watching the scene unfold in front of me, I started to wonder — what movies show people with facial differences as the hero instead of the scary villain? As I sat there thinking about this question, only villains came to mind (keep in mind that this is a small, basic list):

• Scar from “The Lion King,” a scar being one of his evil definers. In fact, his facial difference is his name.

• Beast from “Beauty and the Beast.” He has a different kind of “difference” because he turns into a human later on, but while he looks different he is shown as angry, bitter, friendless and controlling.

• Two-Face, as mentioned above.

• The Phantom of the Opera from “The Phantom of the Opera.”

• Freddy Krueger from “Nightmare on Elm Street.” (I’ve not actually watched this movie, I’ve only heard of it and seen images from it.)

• Penguin from “Batman Returns.”

• Lord Voldemort from the “Harry Potter” series.

• Witches from a lot of different movies (warts, long and crooked nose, green face).

Maybe there are movies portraying people with facial differences in a positive way, maybe even as a hero! But more often than not, we’re stereotypically portrayed as evil, bitter, isolated and ugly people. I know there are villains who look “normal” in the movies. But those who look “normal” also have a lot of representatives playing heroes. There can be a healthier balance.

If you’re going to portray people with facial differences as evil, please balance our bad-guy character representatives with good guys. Help show the world we have positive value in this world. We may not look like the stereotypical Prince Charming or Disney princess, but we’re heroes, too. Maybe we’re not all saving the world in a dramatic Hollywood way like Superman or Batman, but we’re impacting it.

Many people with facial differences can tell you stories full of struggle and pain. We’ve all been bullied. We’ve all been made fun of and stared at — and that doesn’t stop once we graduate high school. Having a facial difference equals a lifetime commitment to harsh treatments.

Yet, these hard experiences don’t make us villains. They don’t make us evil. These experiences help us learn to overcome and develop strength and compassion. They help us see the world in a different, beautiful way. We’re just ordinary people who happen to have extraordinary circumstances.

I work at a elementary school. During today’s lunch recess, I noticed a distressed child on the blacktop. She was sitting on the hot, summer blacktop and I was trying to help her gain the strength to stand on her own two feet again. As the child cried out her sorrows, she told me another child rudely yelled at her to “shut up.” I tried my best to remind her that her words and thoughts matter. I told her she matters.

As the tears started to dry on her flushed cheeks, I shared a bit of insight that took me many years to understand: Ultimately, no matter what other people say to us or how they may treat us, we have to decide how their words and actions impact us. We’re the one in charge of how other people make us feel. No matter what others try to say and do to us, we know who we are — and that’s what matters most.

Maybe not everyone with a facial difference is changing the world in a noticeable way. But some of us are changing the worlds of the people around us. Like the weeping child sitting on the hot blacktop, that child’s world is the world that matters.

We’re brothers, sisters, moms, dads, daughters and sons who come from all walks of life. We’re people with a purpose. We’re people with stories to tell, playing the part of the hero to those around us.

Maybe we don’t look like the average Joe, but we’re still beautifully and wonderfully made, full of potential with a lot amazing things to offer the world.

Help us teach current and future generations with unique facial features that they can be heroes, that they can do anything they put their minds to. Help us teach them that they don’t have to be isolated, bitter or angry, that they can dream big dreams and achieve those dreams! Show them that they have value.

Hollywood, you have the power to make a change.

We, too, are the heroes. We’re the good guys.

Please stop encouraging and embracing the stereotype we fight against on a daily basis.

The Travelin’ Chick and a Beautiful Hero,

Crystal

A version of this post previously appeared on The Travelin’ Chick.

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To the Special Needs Parents Who Don't Fit In

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I know you. You sit alone at the specialist’s office while the other parents chat about the gains their children made in therapy. If there’s a .01 percent chance of a complication/diagnosis/rainy day, your child will experience it, 100 percent guaranteed. You visit special ed programs that are too advanced for your child, and cry after leaving the school.

I was you. I am you.

From the instant she was born, my daughter did not fit in with other children. Complications during her delivery led to multiple skull fractures and bleeding in her brain. In the NICU, she was a giant in the land of preemies, all 8.5 pounds of her crammed into an isolette more commonly used for babies a quarter of her size.  Once she was removed from the ventilator, her paralyzed vocal cords and collapsed lung meant nothing – in a sea of silent babies and beeping machines, you could hear her cries from down the hall, past the front desk, scrub-in area and the storage lockers. During those three weeks, it became increasingly clear that – for the rest of her life – she might not fit in.

This can be true for other special needs kids, and, as a result, for their parents.

My daughter is fed primarily though her g-tube. The “tubie” community is a valuable resource, yet common questions online are about how to affix a pump to an active child or how to help their child explain their tube to their friends. My daughter will probably never walk on her own (if at all) and might never be able to communicate in ways other than crying, laughing or throwing toys on the floor. She’s also in a wheelchair, but lacks the awareness to be proud this is “how she rolls.” My daughter is also visually impaired. This community means get-togethers with games like “Beeping Frisbee.” (See above limitations; you can keep your beeping Frisbee.)

As a result, it’s difficult to find a place where we fit in as parents. Community in the NICU was primarily geared toward parents of preemies. I didn’t want to participate in scrapbooking tiny footprints (my child’s footprints covered two pages) while looking at photos from NICU reunions of children running toward their former nurses to thank them. It was many months before I tried to fit in again, when I found a group where we had some common ground.

And I came to realize that you can fit in – and be alone – all at the same time.  For me, this meant letting people into our lives, including those who I call “the greatest people we wish we’d never met…”

  • NICU nurses A and J, who cared for my daughter when she was at her most critical, who took the time to talk with us as parents and as people, and who didn’t hide their emotions when upsetting news was delivered. I’ve enjoyed seeing their families growing after such a rocky start to mine.
  • The moms in my moms’ group of medically fragile children, who – despite having children with differing diagnoses – are all too familiar with the combination of conditions that make our kids particularly special. Seeing their families grow after having a first child with significant special needs, especially those involving trauma during delivery, helped to affirm that we, too, could grow our family after my daughter’s birth.
  • Preschool teacher J, who is the most creative person and who engaged my daughter in the classroom, despite her being miles behind the other kids in her class. The video she sent one day of my daughter’s classmates exclaiming in wonder when my daughter took two (supported) steps, and the little boy who tried to hug her immediately after, still brings me to tears. I hope my infant son grows up to be that much of a cheerleader and supporter of his big sister.
  • And K, the amazing-beyond-words caretaker of my daughter for the past three and a half years. She’s devoted to our daughter, and I know she cares for her deeply. She’s truly a member of our family.

The greatest people I wish I never met were always right in front of me, and they’re willing to talk, listen and share with us. I now realize we are not alone – even though we don’t fit in. I hope the same is true for you.

The Mighty is asking the following: What’s one unexpected source of comfort when it comes to your (or a loved one’s) disability and/or disease? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our “Share Your Story” page for more about our submission guidelines.

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My New Take on 'God Only Gives Kids With Special Needs to...'

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Today, exhausted and in need of support, I vented to a group of my mom friends about my daughter’s epic sensory meltdowns. They listened intently as I described her shrill screams when she’s overwhelmed. They shook their heads with sympathy when I recounted her hitting, biting and kicking.

When I’d finished, only one of them was brave enough to respond. “I think God only gives kids with special needs to people who can handle it. You are so strong and amazing,” she said.

Two simple, heartfelt sentences. Two powerful sentences. Two sentences other mothers of children with special needs have told me they cannot tolerate. Two sentences often the focus of countless articles on the internet — “10 Things Never to Say to a Special Needs Parent” or “5 Things Special Needs Parents Hate Hearing.” I’ve shared these articles on my Facebook page. I’ve “liked” them. I’ve fantasized about high-fiving the authors.

And then my friend uttered those two sentences. Two sentences I was prepared to despise. Two sentences that — for whatever reason — did not offend me at all.

In that moment, I came to the realization that I didn’t share the same opinion as some other parents and writers in the special needs community. While I understand the importance of writing these pieces  — to protect our children, to educate the public, to raise awareness and to form connections — I question if these writings sincerely bring us together. I feel they have the potential to tear us apart.Why?

Because the people who need to be reading these articles aren’t — just like a thief isn’t going to take the time to stop and read a “No Shoplifting” sign in a store. Who reads that sign? The people who pay. The people who are honest. The people who care.

So who are the people taking the time out of their days to read these pieces?

They’re our well-meaning friends and family members — the people there when our children first receive their diagnoses. They see our tears and feel our pain, and with love in their hearts, they say, “God only gives special children to special parents.”

They listen to us explain our many fights with the insurance company for the adaptive equipment our children so desperately need, and with admiration they say, “Your child is so lucky to have you.”

They watch us run back and forth from physical therapy and occupational therapy and developmental therapy. When in exhaustion we say, “I can’t do this,” with encouragement they respond, “You are strong.”

These are the people reading our articles. The people who love us. The people who may not be perfect but who mean well. The people who are trying and who care. And the last thing I want to do is push someone away for trying — trying to pay me a compliment, trying to show me support, trying to interact with my child.

Although I may be entirely alone in this thinking, maybe it’s not just others who need guidelines on how to interact with the special needs community.  Maybe we need them too:

 I will believe in the goodness that exists in each of us.  

I will appreciate those moments when you speak from the heart.  

I will listen with an open mind for your intended message.  

I will not expect you to be perfect.

I will value any and all of your efforts.  

I will forever be grateful for the care and compassion you show.

To my friend who said I was strong and amazing, thank you. To anyone reading this, so are you. And I say that with so much love, because I care.

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The Mighty is asking the following: What’s one commonly held opinion within the community surrounding your disability and/or disease (or a loved one’s) that doesn’t resonate with you? If you’d like to participate, please send a blog post to [email protected]Head here for our blogger guidelines.

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I Once Hated 'Welcome to Holland.' This Changed My Mind.

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So there’s a lovely little story called “Welcome to Holland” written by Emily Pearl Kingsley.  It’s an analogy of sorts. It compares welcoming a little one with a disability to a trip to Holland when you were trying to get to Italy. If you haven’t read it, you should. (You can find it here.) It’s pretty amazing stuff… unless you’re still grieving, you bleed Italian blood or someone tells you this tale and botches it completely. Imagine my disdain when all three happened concurrently.

I was in the hospital after my son, Judah, was born, doing what I did at the time: crying huge, puddle-making tears. My face was crimson and splotchy, my breath was hard to catch, my brain was blurry and my eyes were puffy and tired. In this state, I would’ve preferred that no one see me. But when you are in the hospital, nurses must make frequent visits. Every time a nurse arrived, I felt the need to preface my crying, in case they didn’t know. Their facial expressions were all similar. They were nervous to be around me and annoyingly much less afflicted than I was. They held sympathetic eyes but didn’t quite get my condition. I shared, sobbed and longed for them to say something along the lines of “Oh, this situation is clearly upsetting you. Let’s put that baby right back, do it again and everything will be perfectly OK.” Anything less than that statement invoked more tears and inner anger.

There was one lovely nurse we already knew. She was a great teacher, but not a successful storyteller. When she arrived in my room, she carefully reviewed my fragile state. Satisfied that she could solve my suffering, she cleared a comfy space for herself at the foot of my bed. She then attempted to launch into the story of “Holland,” except she couldn’t remember the name of the place. “What’s that place with the tulips?’” she asked my husband, Bobby, and me. “The one with the windmills? Not Switzerland, what is it?” This was our introduction to the story.

I’m now convinced I had her flustered. When I say I was in a state, words do not do it justice. This kind, blessed, sweetheart of a woman was grasping for words that my state made her forget. The pressure radiating from my sad, swollen eyes told her, “Please! Make this all OK.” Now I know I was a lot to take… so much, in fact, that I made her forget the name of the place the story’s named after.

The nurse continued the story with the same amount of stammering. She knew some parts. She remembered we were supposed to head to Italy and that the place we were headed to wasn’t “disgusting or famine-filled.”  When even more details escaped her, she ended with, “Well, anyway, basically, the story is supposed to show you that you’re just somewhere different — not Italy, but not bad… and if you keep thinking of Italy, you’ll miss out on the tulips and windmills in this other place.”

I hugged her as Bobby and I doled out thank-yous. Then, when she turned to leave, she put a finger to her lip and calmly rejoiced, “I remember now, it was Holland.” Not a minute later, when she finally retreated, my first words were: “Bobby, F#*& Holland!”… And that’s how I came to hate the story “Welcome to Holland.” It was that place with a forgotten name, told with careless disregard by a Holland-loving nurse. It was compared to the native land of my ancestors and told when my body was an anvil of grief.

Others (and really, thank you all, it was not you; it was timing and it was me) sent me this story via Facebook in private messages. I kindly thanked them all and never once re-read it. In fact, here’s a quote from my first blog entry when I renamed it “Finding The Joy”: “I have chosen to rename and remake my life. I choose to not rename my life with a trip to Holland, but rather to include the ‘Italy’ in all my obstacles.” Whoa! That’s the stuff denial quilts are sewn from. But I wasn’t ready, and you can’t punch your airline ticket to Holland until you’ve felt what you needed to feel.

Oddly, close to Mother’s Day, with no real acknowledgement, I was finally ready.

Now, an attendant didn’t announce, “Beth, you may board your flight to Holland now” and no one pulled my arm toward the gate. It was subtle, eerie, fated. I just happened to be scrolling through my Insta-friends, many of whom hold a passport to this different destination. Littlest Warrior was explaining another top-selling, toddler t-shirt that boasted “Holland Tour Guide.” She shared the story for her followers. For some reason, I decided to finally give the story another try. It’s like I read it with a new set of eyes. I bursted with pride at every line, screaming “Yes, yes, yes… that’s us!” I did imaginary victory leaps with jazz hands singing in the air.  I cried tears for being understood and how the analogy nailed it just perfectly.

I was so excited, I had to shout it to someone and so I shared the story, via Instagram, with my sister-in-law/dearest friend. Being the busy women we are, we never actually discussed what transpired. Then, the very next day, a Mother’s Day card arrived addressed to me from her mother. Inside, folded in fate, in my hot little hands, landed the story “Welcome to Holland.” I couldn’t call my sister-in-bestie fast enough. When we spoke, we couldn’t believe the timing. It was too wild that I shared the story with her, just hours before the mailman delivered her mom’s card. She revealed to me, “My mom has been wanting to give that to you, and she knew she had to wait.”

The perfect amount of time had passed. The story was plastered firmly in son, Judah’s, book. My layover had expired, my journey was embarking, and I couldn’t wait to tip-toe through the tulips.

I’m proud to announce that I am elated to be in Holland. There’s no sadness, regrets, jealousy or projection here. It’s a glorious revelation. I’m Dorothy in Oz but with everyone I love. I know, I know… those of you with the “fresh diagnosis” hate my positivity right now, my magical mentality. You can. You can want to stomp on tulips and detest windmills. That might be what you need. For when it’s all over, and the grief is gone, you’ll think, Geez why did I ever hate Holland so much? Holland never came to kidnap me. It never took me captive there. It never made me love it. It just was… with its beauty and differences.  All along it had sublime souvenirs, tour guides to teach me and brilliant brochures.

Most importantly, it had glorious natives like my very own Ju-Ju. They were right there, all along, to change my perspective. Tales of tenacity, compassion, inclusion and prosperity run rampant in Holland. They easily sway me from rich red wines and crusty bread in Italy. I love you, Holland. I’ve arrived. I’m putting down roots here. And I may still take that trip to Italy one day.  But it will be to share all the fascinating artistry that Holland proudly holds.

A version of this post originally appeared on Finding the Joy.

The Mighty is asking the following: What’s one commonly held opinion within the community surrounding your disability and/or disease (or a loved one’s) that doesn’t resonate with you? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our “Share Your Story” page for more about our submission guidelines.

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The 3 Words I Want to Tell Every Mother Who Can't Hold Her Child

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The day after delivering my son, Bennet, I was discharged to go home. In the midst of the whirlwind surrounding him, the fight to get him stable, they went through the normal procedure of releasing me from the hospital. Friends, I don’t think I can explain how excruciating that process was for me. One of the most painful, horrific experiences I have endured.

I was forced onto a wheelchair (hospital policy for newly delivered babes and mothers) and slowly wheeled out of the Labor Delivery and Recovery (LD&R) ward, onto the elevator, down the long corridor, out the front door and into the car awaiting me. The car we’d just bought to fit our family of five. The car I hated from that moment on because I was scared it wasn’t needed after all. This whole process felt so humiliating. Why are you making me go through this! Isn’t there a back door for people like me? For mothers with empty arms?  

Mothers with empty arms… I realized much later this was a part of our story I didn’t want to talk about. A part I didn’t know how to talk about.

A collage of photos of Christie, the author, next to her baby in the NICU

Mothers with empty arms. This secret, personal, intimate wound in my heart. There’s no describing it. There’s no explaining it. My husband, Joe, suffered his own pain, but he couldn’t understand this. My friends and family ached for me, cried with me, prayed for me… but this was mine. And there was no forgetting. My body didn’t allow it. The vivid memory of the baby moving fiercely in my belly just days before. My aching breasts, my cramping stomach, my swollen ankles, they made sure I knew. The slowness of my body when I was willing it to run from the parking lot at UCLA to my baby’s side, but I just couldn’t make it do what I needed it to do. Or the nurses and doctors who kept asking me if I wanted a wheelchair (please stop drawing attention to me!)… I knew.

A week ago, I had a conversation that reminded me of this secret wound. I have a vivid memory of not looking anyone in the eyes for a long time after Bennet was born. I’d accept love and affection, I’d covet prayers and support, but I couldn’t make eye contact. I was terrified to go into Trader Joe’s and have the checker (whom I was on first name basis with) ask me where my new baby was. I’d shake pulling into Target because I was so scared I’d run into someone I knew and have to make eye contact.

A collage of photos of Christie, the author, next to her baby in the NICU

And then it happened. I ran into a mother who watched me grow up alongside her son. A mother I knew very well. A mother who had endured this same type of secret pain. I didn’t know at the time. I knew her son experienced medical issues. But as she stood there and encouraged me, I realized. She saw me. She saw my secret pain. Because she had endured it once, and it was a part of her. I didn’t know about it until this moment because she didn’t share this part of her story with everyone in her life. And it was like, I knew immediately why, why I’d never heard this part of her story. It was her own secret pain. It was a gift that I ran into her that day. I needed to be seen.

So to the mother with empty arms: I see you.

The mother who had her baby snatched from her immediately after delivery because he wasn’t breathing… I see you.

The mother who sat next to me in the pumping room at UCLA, pale and shell-shocked because “something happened and they took him away” but you still didn’t have answers so you just went to the pumping room to do something useful… I see you, that was me a month before.

The mother in the same room as us who held her baby as he passed in her arms… I see you. I prayed for you. The nurses tried to protect me from witnessing you, but I did see you and I’m still impacted by you.

To the mother who’s been told her sweet babe won’t live outside the womb… I see you. I love you. I pray for you. 

Christie holding her baby in the NICU

A version of this post originally appeared on A Beautiful Window.

The Mighty is asking its readers the following: Describe the moment someone changed the way you think about disability and/or illness. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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When a Veteran Stood Up for My Son at the Airport

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My husband and I aren’t rookies when it comes to traveling with our son to and from the hospital. And although time has passed, the memory of one particular journey is still fresh.

It was Sunday evening, and we were flying home from our son’s surgery. He was straight out of the Pediatric Intensive Care Unit for a specialized spinal cord surgery and hadn’t yet gained the ability to walk.

I’d contacted the airline weeks before to ensure the flight was direct, our family could sit together and above all, to request Americans with Disabilities Act accommodations. It’s often roulette with the airlines we never know how accommodating they will be. Regardless, we always go in with a positive attitude.

This particular day, though, things started smoothly. When we arrived at the airport, we were greeted with a wheelchair and a nice gentleman who helped us through security. Our son was exhausted, but he never had to get out of the wheelchair. Everything was going perfectly, but just in case anyone questioned us, he kept his hospital bracelets on and we had extensive medical documentation.

We finally made it to our gate, thankful to sit in the waiting area. With what we thought would be the toughest part of our journey complete, it felt like we’d won the airport lottery. But when the attendant opened the ticket counter, things quickly went south.

She informed us that we could no longer sit together on the plane. I explained to her we had ADA accommodations and it was important we sit together. Our son needed help getting in and out of his seat.

The attendant looked at me and said, “You are not sitting together. Too bad. Sit down.”

My son overheard the attendant and started to cry. We were all in disbelief, at a loss about what to do. Our son could not navigate the flight home by himself.

I was in a fog, sorting through my emotions and attempting to create an action plan. Then a man who overheard this conversation got up and started talking to the attendant. He was dressed in a retired Navy veteran sweatshirt and hat. I watched him, shocked by his kindness. We were complete strangers to him, and he still tried to help us. But again, the attendant used her desensitized robotic voice to tell him the flight was full, she could not accommodate us, sit down.

All I could think of was to call the airline to contact a representative for help. I didn’t notice, but the Navy veteran left the gate. As I sat on hold with the airline, he returned within moments with a supervisor. He explained what had happened, and the supervisor immediately removed the attendant from her post.

The best part? The supervisor knew my son’s surgeon. She had worked part-time as a nurse at the same hospital. Divine intervention if I ever saw it! 

I’ve had a lot of time to reflect on this situation, and my son has had a lot of time, too. Unfortunately, he learned there are mean people in the world. But a teachable moment arises when the “icky” emotions fade. A hero who fought to protect our freedom also cared about my son. He cared about our family, going above and beyond to make sure our needs were met. He went to battle for us. Thanks to this wonderful Navy veteran, we were able to sit together as a family and help our son fly safely home.

I only regret not getting his name. I hope our thank you on the flight and again as we exited the plane let him know how overwhelmingly grateful we were for his kindness.

“A hero is somebody who voluntarily walks into the unknown.” – Tom Hanks.

A version of this post originally appeared on HOPE.

The Mighty is asking its readers the following: Describe the moment a stranger — or someone you don’t know very well — showed you or a loved one incredible love. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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Real People. Real Stories.

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