little girl with apert syndrome

Maybe you’ve known about Apert syndrome for a while and have been slowly preparing yourself for your child’s arrival. Perhaps it was unknown to you prenatally, and you were completely taken aback when your child was born with the features of Apert: mitten hands, fused toes and a misshapen head. Either way, life has been forever changed now that your son or daughter has officially received the diagnosis, and you need that lighthouse as your beacon right now.

First of all, breathe. It really is going to be OK.

little girl with apert syndrome

That’s not just a worn platitude I’m saying to calm your nerves. It’s the truth. Having a child with Apert syndrome isn’t easy, but the journey gets better because you change.  Your attitude changes. Your perception changes. Everything about Apert will shift from a burden to a blessing. And, at some point down the road, you will see your child rather than the diagnosis. That alone is cause for your joy, and when it happens, you won’t know it right away.

But when you look back on your journey, you will smile to yourself and tell another new Apert mom or dad, “Hey, someday it’s going to be OK.”

That being said, you need to know that you aren’t alone. The Apert family is ready and eager to welcome you into its fold.  Trust me, I know, because everyone I’ve been privileged to meet in this community has become my family at the heart level. In many ways, they will be more family to you than your blood relatives, not because your relatives don’t genuinely care about what you are going through, but because they can’t possibly understand what it’s like. But your Apert family does. They are moms and dads, kids and grandkids, adults and seniors. They are friends and mentors, counselors and nurses, healers and advocates. 

You will need them. Cling to your Apert family. Start as soon as your child is born, or shortly thereafter. Oh, I realize it seems to be the worst possible time to make these connections, but they will be your lifeline when, out of nowhere, you feel suffocated and confused, angry or overwhelmed.  Your Apert family is there to listen, share, offer prayers and advice (but only when solicited), and they will rally with you. They’ve been there. Grasp their strength when yours is depleted. Find in them the courage and encouragement you need to keep moving forward – for your sake and the sake of your child – because there will be days when you have none.

And on those days when life seems to be wasting away and you have no idea how you will make it through, do not give up hope.  It seems flimsy and clichéd to say such a thing, but believe me, I have been there.  I have been in the pits of darkness with this disease, because it is so mysterious, but hope is what I cling to when all else fades away into oblivion. Hope will be your reason, your breath, your focus. Keep it at the forefront, and you will be able and willing to confront whatever may come – good or bad.

And the bad will come.  Don’t dwell on it, but expect it.  Allow it to be in the back of your mind, because it’s a reality. But when the bad arrives, remember that “this, too, shall pass” and “all will be well, and all manner of things shall be well.” These are not meaningless words. They are truth, and they will guide you through the murky waters of caregiving. 

The bad days or weeks or months will remind you of the goodness that still exists, somewhere, in the midst of the struggle, and then you wait for the good to return to you.

The good times will not last, either, so don’t ride on the hope that “this time, things will be different,” because they won’t. Wait until another surgery hits, and you will find yourself near despair if you live according to the fallacy that goodness lasts, too.  The key to acquiring peace in the throes of Apert syndrome isn’t so much in riding the wave of good or bad days and months, but it is in living in the present moment and finding even small blessings in each day. 

little girls with apert syndrome

Your child is a blessing and a gift to the world.  Do not allow the world to tell you otherwise. There will be people who pity you, but don’t allow yourself to become a victim. There are enough victims in the world to fill it. What you must choose is victory, knowing it will not be achieved without struggle and pain. But your child is far from the burden others believe s/he is. Remember that. Relish in his/her laugh. Enjoy the moments you share together in unbridled joy. They may be few or many, but they are treasures and will contribute to expanding your heart far beyond imagination.

Finally, remember life is a journey. No one else can live it for you, nor can you live someone else’s. We are not meant to judge and be judged, but it still happens. Be OK with that. Be aware of who you are – warts and all – but without labeling yourself or anyone else, especially your child.  Labels destroy. Your journey and your child’s journey are meant to be lived to the fullest – tragedies and triumphs together. If you live well, you will learn to love well along the way. And that is what matters above all else.

Find out more about Apert syndrome support by visiting these online communities:
Apert Syndrome Awareness,  Apert International (Apert USA), Apert.org.

June is Apert Syndrome Awareness Month. Spread the word and get educated to #choosekind! 

The Mighty is asking the following: Write a letter to yourself on the day of the diagnosis. Check out our Submit a Story page for more about our submission guidelines.

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Apert syndrome. Not many people know what it is, and no one would expect 7-year-olds to figure it out on the spot, either. No one seemed to understand how a child could be born to look so remarkably different than the rest — not even the one the disorder is affecting.

The closest definition a 7-year-old with Apert syndrome would be able to come up with is it’s something that causes the kids around her to shy away from her. It’s something that gives grief and loneliness and makes her feel as if she has to sit by herself at a lunch table because she feels too awkward and nervous to approach anyone because of how they react to her. It’s something that makes her constantly ask herself, “Why me?”

This is for the 7-year-old me. This is for the girl who spends all her recesses on the playground, walking around by herself because everyone else has drifted off into groups and wouldn’t invite you to play with them. Be patient. You’ll soon surround yourself with a bunch of friends, ones who will love you unconditionally no matter what, and they will be there for you through every obstacle you come across. They will never leave just because you look a bit different from them and had to have many trips to the hospital for surgeries.

I speak to the girl who was often scolded by her mother for not being on the same level of maturity as the rest of her peers (as mature as grade school children can be, at least). You’re going to grow and carry a specific type of wisdom not many people will be able to see with anyone else. It’s the wisdom to judge people on their character, whether they have a beautiful personality more than a beautiful appearance. It’s the wisdom to always hold out a hand to someone in need, no matter where they come from, how they look and how they live. Before you know it, you’ll be right there with your peers, proving your maturity.

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I speak to the girl who grew up living a life of struggles, doubt and judgment. Who didn’t think she would go far in life because no one properly welcomed how she looked compared to the others around her. Don’t give up. Because one day, you will find happiness. One day, you will find confidence just being yourself no matter what society thinks of your Apert syndrome. One day, you’ll find yourself surrounded with friends who will love you the way you are no matter how you look or what you do.

Don’t give up. 

One day you won’t be the lonely girl on the playground.

The Mighty is asking the following: Write a letter to yourself on the day of the diagnosis. 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 Submit a Story page for more about our submission guidelines.


Apert syndrome is a rare congenital syndrome that causes unusual development in the skull, face, hands and feet. It affects about an estimated one in 65,000 to 88,000 newborns, according to Genetics Home Reference, and the most notable physical features include webbed hands and toes, bulging eyes, an underdeveloped upper jaw and a sunken mid-face.

That’s the dictionary definition. Go on WebMD, eMedicine, MedlinePlus or any dictionary, and you can find a variation of the description. But for me, it goes deeper than that.

For me, Apert syndrome is a grind. It’s wondering why you get asked so many questions about your appearance. It’s wondering why everyone keeps staring and pointing at you as you walk by, doing an awful job at remaining subtle.

For me, it’s feeling like you want to give up. No more hospitals, no more surgeries — my one wish as a child was for someone to make all the pain stop. Cut the IV, cut the aching body parts and cut off the casts and bandages. It’s feeling like all the effort is a waste when the whole world seems to be against you. Why bother trying all the operations if you’re still going to get judged for who you are? It’s feeling like you want to please everyone every day, but they’re still not satisfied with you. It’s feeling like your friends don’t see you as much of a friend and more of a charity case. It’s heartbreak and doubt. It’s questioning your worth.

I’ve lived 20 years with Apert syndrome. I’ve had to grow up a lot quicker than anyone else my age. It’s a privilege and a chore. It’s walking around school, feeling like I could never compare to the pretty girls with perfect faces all the guys chase after. It’s wondering about the friends I do have and questioning what’s going on in their heads. Are they friends with me because they want to or because they feel bad for me?

It’s struggling with school and trying to get my grades up to par. It’s feeling invisible, watching as life passes around you and no one noticing you as much because they don’t have any regard for anyone different from them. It’s breaking down crying because three people I’ve known for a two-month time span are being nice to me, and I’m surprised when they say they actually like me. That’s how much insecurity consumes me.

In my eyes, Apert syndrome also means possibilities. It’s a second chance for transitional periods like going into middle school. It’s creating my own world where I meet friends who love me the way I am and see beyond my face. It’s waking up to the morning sun and having faith it’ll be a good day. It’s having strength to never give up hope, no matter how many bombs life throws at you.

It’s being considered a role model for everyone and getting reminded people are inspired by my journey. It’s being less concerned with how I look and more with how I act. It’s feeling even a bit of sympathy for the people who don’t share the same mentality. It’s becoming the “change you wish to see in the world” and showing my heart more than my body, patiently waiting for everyone else to follow my lead.

Apert syndrome is my call to the world. It’s me letting the world know it can knock me down as many times as it wants. But I haven’t given up yet. And I’m not planning to.

Vivi Zhang.1-001

The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with 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.


Twenty years ago, my mom’s midwife said the four words that made hours of agonizing labor pains worthwhile.

“You have a girl!”

Little did my family know my arrival was not the only present I had to offer.

“Curious… your daughter has Apert syndrome.”

Since that day, I’ve lived through two decades and braved 16 surgeries. I’ve also seen enough to know having Apert syndrome doesn’t mean having a bad life. Here’s what I’ve learned so far:

1. It’s OK to have help. Growing up, I knew more adults than kids my own age because I was always surrounded by therapists and special education teachers who had a responsibility to work with me. They gave me comfort and opened my eyes to the reality that it’s not stupid to ask for help. You don’t always have to try to figure out the puzzles of life alone. Sometimes all it takes is a guiding hand to get on course.

2. Naivety is dangerous, especially when it comes to choosing your friendships. Let’s face it — kids of any age can be judgmental and are sticklers for normalcy. For a kid with Apert syndrome, a case of the insecurities could appear far earlier than it might for typically developing children. My family thought I was blind, deaf and oblivious to the stares and awkward inquiries about my appearance, but I knew there had to be a reason why I wasn’t making friends, and why the friends I did have treated me as more of a tag along than an equal. When you’re different from what society expects, it’s important to choose your friends wisely — friends who will love you the way you are no matter how you look.

Vivi 2

3. You can be beautiful if you want to be. So I’m not the blonde all the cool guys chase after, and I don’t wear Victoria’s Secret and splatter my face with makeup. Sometimes, I get comments that I dress like a boy (mostly from my mom). But I know I’m beautiful because I’m more than just my looks. I know I’m beautiful because I don’t care to impress anyone. Every day I wake up to the same routine of just being me. And that’s when I’m happiest because there’s no other great feeling than just being yourself.

4. It’s not my fault. I was only 3 months old when I first had doctors prodding and poking at me. Growing up, I’d be sitting in the occupancy room, and even when I’d have cartoon videos playing on the TV to cheer me up, there’s a part of me that asks myself, “Why me?” The more I grew, the more I realized I have no control over this. It’s not my fault. I was born with this. I didn’t do anything wrong and I didn’t go against anyone. The doctors aren’t trying to hurt me, they’re just doing the kindest thing for me and making sure I would get the best treatment and medical attention. I never and would never have the power strong enough to control it. No one is at fault for something they can’t control. I am not the villain even if society wants to disparage me just for being different.

5. Just because you’re different does not mean you’re worthless. Like almost everyone in this world, I’ve come across people who are different and don’t adhere to what society deems “normal.” We’re different from each other, but at the same time, we all have one thing in common: at one point in our lives, we might’ve been under the notion that we don’t belong in the world because the world doesn’t always show tolerance for us. But within that world, I’ve found my own world. I found support and friendship and love from friends who are understanding and don’t care how I look or how many surgeries I’ve had. They saw my worth. If I can feel that way, anyone else can, too. So what if you look and act different from the rest of the population? Look around you and find your own world where there are people who believe you matter and who love you unconditionally. Then, you’ll feel like you’re worth it. Everyone is worth it.

So if you’re one of those rare humans who was born with Apert syndrome, don’t worry. You have the voice to make a difference and prove it’s OK to rebel against stereotypes. Apert syndrome is a blessing, not a curse, and you are a miracle.

Vivi

The Mighty is asking the following: Create a list-style story of your choice in regards to disability, disease or illness. It can be lighthearted and funny or more serious — whatever inspires you. Be sure to include at least one intro paragraph for your list. 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.


I wrestled intensely with my daughter Sarah’s diagnosis after she was born. My prayers were initially desperate bargaining, such as, “Please heal her,” or “Please take away her syndrome.” It wasn’t that I didn’t love Sarah. I just didn’t want her to have a difficult life, and more selfishly, I didn’t want to have a difficult life.

Sarah recently turned 2. As she has grown into “toddlerhood” her unique personality shines more and more brilliantly. And I have come to realize my prayers have changed. I no longer ask that she will be normal or typical because I cannot imagine Sarah to be anyone other than herself.

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While her syndrome does not define her, it has become a part of her. I now thank God for the gift of Sarah — Apert Syndrome and all.

What’s more, I was recently humbled by the admission that I have changed because of Sarah.

These five points are not an exhaustive list but only the beginning of how I’ve noticed I am different and changed.

1. Patience. Anyone who even remotely knows me as an acquaintance, let alone my closest family members and friends, will readily acknowledge I have a short fuse. I’ve never been a particularly patient individual, and I can’t say I ever really wanted to be. But due to Sarah’s unique development, I have developed a sense of waiting without restlessness. There’s an inner calm that resides in me as we venture into new territory with evaluations, specialist appointments, fittings for orthotics and pressure garments, new surgeries, diagnostic tests, etc.

Patience has flowered in my heart since I’ve had Sarah. She has shown me to be angry and in such a hurry all the time is counterproductive.

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2. Simplicity. An increased reservoir of patience has definitely led me to a deeper appreciation of simple moments and blessings. Because our family doesn’t fit into the typical mold, we do not savor the same types of luxuries most American families do — annual vacations, leisurely weekends or exquisite material possessions.

Instead, we’re enriched by a 10 minute walk to the local park where we watch our girls swing gleefully and run around together for unbridled moments of pure childhood play. These are the moments, seemingly minuscule and definitely fleeting, that enrich my life. I covet them because they happen so seldom. Yet if I’m careful, I recognize the small gifts each day presents to me — a short note from a friend, a hearty and healthy meal and laughter shared with my family. I have been given all I need right here, right now.

3. Generosity. Here’s another virtue I sorely lack by nature. I’m the only girl in my family of origin, so I never had to share much of anything — my clothes, a bedroom, my toys, even my time. Over time, I grew to be an egocentric young lady who matter-of-factly wanted to do whatever I felt like.

Sarah’s presence in our family has expanded my heart so I think of my children and what they truly need from me (not want). Generosity means I am more capable of letting go of my time and to-do list in lieu of playful spontaneity with my daughters.

Generosity also means I am willing to extend myself not just to my family, but also to others when they are in crisis or dire need of assistance and support. A generous heart, I have learned, is an open and magnanimous heart.

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4. Sacrifice. Along with selfishness, I have never been keen on offering up my personal comforts in order to assuage someone else’s pain. It’s just difficult for me to do this. But when Sarah was an infant she was so little and helpless in my arms. I knew immediately I could not forsake her needs due to my unwillingness for discomfort, both emotionally and physically.

Sarah has taught me there will be long nights and exhaustive waiting in surgical areas at hospitals, numerous irritating phone calls with the insurance company and even more detailed conversations with specialists, therapists and physicians. Sacrifice entails an intentionality of surrendering one’s physical or emotional comforts for the sake of love. And love, I have found, is not in what I can get from everyone else around me. It’s what I give — and give freely at that.

5. Acceptance. I’m not speaking of tolerance here, but rather a tranquil indifference to whatever the outcome of various medical or social concerns about Sarah. It’s also accepting her mortality, as well as my own, and making the short time all of us have on Earth count.

Acceptance means my ability to say it’s OK if I don’t have all the answers to my questions. It’s entering into the mystery of life knowing there are far more enigmas than there are cut-and-dry solutions in life.

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If I look in retrospect, I’m ashamed at the person I once was. Having two daughters with special needs has opened my eyes and my heart to the suffering of others with far greater afflictions than what our family has to bear. I no longer ask, “Why me?”

Now I see limitless possibilities through the lens of hope.

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Sometimes I forget that Sarah looks different. Actually, I forgot long ago that Sarah didn’t look like a typical baby or toddler. But this week I was reminded – sadly – in an otherwise normal milieu.

When our family is out in public, I often forget that we aren’t a typical American family. Sarah’s condition is not usually on the forefront of my consciousness anymore – not like it was shortly after her birth, that is. At that time, I was in a much different place in my heart. I was often embarrassed or even ashamed, not wanting anyone to notice her visible differences – her mitten hands, her pronounced forehead or buggy eyes. I eventually made peace with these, and today I am unashamed of how Sarah looks. It doesn’t matter to me anymore. Sarah is just Sarah.

Still, I forget that others who do not know Sarah or who have encountered her for the first time might see her the way the world sees people who are different – a stark contrast to the chameleons we see everywhere else, the people who all blend together rather than stand out.

Clearly, Sarah stands out. But instead of perceiving this as negative, I have come to believe this is a gift. It is good that Sarah is noticeably different, because her little life reminds everyone else that we are all people.

girl in orange shirt sitting next to a pumpkin

At the doctor’s office, I was waiting to be called into yet another exam room. I had both girls with me, and it was an otherwise ordinary day. Another mom and her preschooler walked into the waiting room and sat down. The young girl, Emma, immediately introduced herself to Lissie, my other daughter, and asked if she might want to play. Lissie, being shy, needed some coaxing, but she did eventually engage in some passive play with Emma.

Emma then looked down at Sarah, who was gleefully scooting on the floor toward the other two girls. Sarah isn’t aware yet that she looks different. She thinks she is just like everyone else, and that is how she is treated at home – just like a typical, normal toddler. But Emma, who had just seen Sarah for the first time, gasped and said, “Mommy, that baby has a funny face!”

Her mom, clearly embarrassed, apologized profusely. I quickly brushed it off with a wave of the hand and said, “I understand how young children are. They are just curious, and that doesn’t offend me, believe me.”

Then Emma noticed Sarah’s hands. “Mommy, the baby only has three fingers!” The poor woman looked like she wanted to crawl into a hole. What does one do in this situation? We all know that children do not have social or verbal filters, and they definitely say what they mean. But how do we, as adults and parents, respond in these unforeseen situations?

I smiled. “Yes, she had surgery on her hands to give her fingers.” Emma, of course, didn’t quite grasp all of this, but thankfully her mom asked me for Sarah’s name and then told her daughter, “This is Sarah. Can you say ‘hi’ to her?” Emma did, and suddenly she didn’t treat Sarah as if she were a social pariah anymore.

I think a parent’s response makes all the difference in the world in a circumstance like this. And we all – at some time or another – will find ourselves in these predicaments.

Even though I knew little Emma was so young and had no intentions of being rude, it still hurts my heart as a mama. It hurts, because I know inherently that the world sees Sarah’s craniofacial condition, while I simply see Sarah.

 

 

 

 

To me, she is just a typical little toddler, and the wonder in her eyes as she says, “Hi!” to passersby both pierces and warms my heart.

It pierces my heart because I see the stares in my periphery, hear the murmurings and whispers when we are in public places, but she does not notice them. She looks at the world through untainted, unblemished lenses, yet the world does not respond to her in like manner.

It warms my heart, however, because I am humbled by her transparency and her innocence, two very striking characteristics in an otherwise sterile society.

After this incident occurred, this thought came to my mind: a funny face is a beautiful face. This is how I see Sarah. I do not see a funny face. I see the face that has become so familiar and so beloved to me and to countless others. I see her unique features, yes, but they become less apparent over time. Her face has become one marked with love and joy, not one that was formed asymmetrically.

When I see Sarah, I see her golden, blonde hair streaming down her neck. Yes, it is wily, but I find it to be beautiful. I notice her big, blue-green eyes and long, curly eyelashes. Are her eyes a bit droopy? I suppose, but I don’t really notice anymore. What I see is the beauty from who Sarah is radiating from within to an external beauty that the average person may not view. But I do. I see Sarah’s sweet smile and her button nose. Is her nose small and the bridge a bit scrunched in? Yes, but I don’t care. Is her mouth a bit small, and her teeth crooked? Is her speech slightly slurred? Of course, but it no longer matters to me.

None of this matters to me anymore. I have given up the fight of trying to fit our family into a societal mold that, in actuality, probably doesn’t exist anyway. It exhausts me to be constantly vigilant as to how others are reacting or responding to Sarah’s differences. Though initially I dreamed we would be an otherwise normal American family, I have now come to embrace the beauty and gift of each family member’s unique attributes.

A longer version of this post originally appeared on Love Alone Creates.

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