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How Ava Beeler’s Facial Difference Changed Her Outlook on Life

pfeiffer syndrome-positivity-trach
pfeiffer syndrome-positivity-trach
Ava Beeler

Ava Beeler was born with a cranial difference and has undergone more than 30 surgeries to stay alive. Not only were these surgeries taxing on her body, but she battled emotional distress as well, as she has often been subjected to children and adults alike gawking at her.

Here, Beeler talks about how she’s been able to maintain a positive attitude and the confidence necessary to keep pushing forward, and why others must learn to have compassion for all, no matter what they look like.

What is the name of the disorder that caused your facial differences?

It’s called Pfeiffer syndrome, which basically just means when I was born, my brain and my skull were kind of together, creating a cloverleaf skull. So my head was a little bit misshaped along with my eyes, they were just a little bit more outward. And there were just a few complications, like I had a trach[eostomy tube] because I had difficulty breathing. I was also born with hearing impairment.

Could you walk us through some of your highs and lows of your experience — what have you had to deal with on a day-to-day basis?

So for me, I am grateful for the fact that I live in such a great community of people. I live in a very nice town. When I went to school, I would maybe get a couple of stares. And when people would look at me and say, you know, “What’s that thing on your neck?”

Because for 10 years, I had a trach, and I haven’t had one for like nine years. So, I would just be honest. I’d be like, “It helps me breathe.” I was just honest because I knew people were just curious — they just don’t know.

And so I just wanted to be open and honest, but sometimes you would get a nasty comment from somebody, and sometimes that’s hard, but that hasn’t happened to me in years. But when I was younger, like when I was little and I was in and out of school because of operations, that was hard.

Because there was the curiosity [from classmates], like, “Why is Ava gone for so long?” And I was prone to getting [really severe reactions from] like a simple virus, like a cold, because of my cause of my trach. So I would be out of school.

So that was hard, but I would say overall, I’ve been treated with love and kindness, and my parents never made me feel different from the rest of the kids.

Is there anything that you’ve physically struggled with?

I would say when I was a child, like when I was really little, I didn’t look at myself as different. I don’t know why. I think it was just because, as a kid, you’re just not thinking about all that kind of stuff. At least I wasn’t. I wasn’t staring at the mirror and thinking like, “Wow, my face looks different,” or “My eyes look different.” Like the fact that I had a trach tube, that didn’t seem different.

It wasn’t until I got into like teenage years, maybe around high school, like even now as an adult, like, I’m like, “Oh my God, I am different,” but I embrace it. I embrace that I’m different. I’m like, “Well, I must have been born with this to raise awareness for people with facial differences.”

I don’t see it as a negative. I just see it as a positive role. I would say one of the only things that was a challenge was when I had one of my final operations last summer. And my face, the appearance of it, because they were doing all of the final preparations and all the tweaks, because I was done growing, they were finishing off everything and I woke up and I was like, “Oh my God, no,” there was swelling.

But in the back of my head, I was like, “Oh my God, I look so different,” but in a good way, like everything looks good. But it took me time because when you’re in that process of having your face transition into like a final look, it can be challenging because you’re so used to one thing, then all of a sudden, bam, they don’t prepare you.

They’re just like, now you look like this. So it is a process. It does take time. Talking about it helps. I would always communicate with my parents, my therapists, doctors, people who have had the operation themselves. You just learn to like, love yourself and learn to love your new appearance.

Like, I love myself, I love my appearance. I love everything that’s happened. I did feel some grief, like, I would best describe it as I was grieving my old, past self, just because it was so quick and so sudden. I didn’t realize how fast the change would be. But then eventually with time, I came to accept it.

I was like, “Wow, this is like a new chapter. This is a new me, like adult me. I’m going into adulthood and I get to live my life and not have to deal with as many operations anymore.” So that’s good.

You had about 30 surgeries — what were they for?

Okay, so, basically to sum it up, I always say it’s mostly on my face and skull. I have a scar on my stomach because I had to get a tube placed in, and that required a surgery. That was the other thing.

That’s another good thing to point out is that one of the main things I noticed that was different about me was the fact that I had a scar on my stomach and nobody else did, like none of my other friends did. And that’s actually one of my biggest insecurities. But at the same time, I think it’s really cool and really strong.

And like, I did something — I had a surgery and I overcame it, and now I’ve got this really cool tattoo-like thing to prove it. I think scars are awesome. I would just say that most of the surgeries I’ve had were just to help with breathing, and to get the trach out.

Then some of the surgeries were to help not only with breathing, but also just normal daily functions; eating, chewing, and swallowing. Because I had the trach, I would get nervous about swallowing. And so that’s like a simple thing that most babies probably learn at a young age, and I didn’t learn until about 2 or 3.

My parents told me I didn’t walk until I was probably like, well, I crawled when I was probably a couple of months old, I don’t remember, but I walked at maybe a year. The development is a little bit behind other kids, and I know this just because I’ve seen other people and I’ve seen myself, the development is a little bit different. So, we are developmentally delayed, but that doesn’t mean we won’t catch up eventually, it just takes time.

What are some common questions other people have for you?

I would say the most common question is like, “How many surgeries have you had?” and then I’m like, “Oh, like, 30 plus.” And they’re like, “Wow.” But to be honest, I don’t really remember anything before 10. My parents do, but I don’t.

Another common question is like, “How are you doing?” How do you feel?” “Is there something I can do to be supportive?” like when I would have surgery.

My friends would ask me, “What can I do for you?” And it’s really complicated when they don’t understand what’s going on, because I barely understood what was going on. So trying to explain it to a friend was always really interesting.

What do you want people to understand about facial differences?

Just be kind, I mean, don’t look at us like we’re different. Because, you know, I’ve heard it from many people. Like a lot of people in my community, they’ve been told they look like a monster, they look scary, or that they’re lesser intellectually.

We can hear you, we can see you. We know what you’re doing. We know exactly what you’re doing. My best advice would probably just be to approach us and treat us like you would any of your other friends — don’t talk down to people ever.

Some people have done that to me. They have talked down to me, like I was not as intelligent as others. Like I was 5 when really I was 10. I’m not a baby. And if you’re not sure about what to talk about with me, tell me anything; talk about school, talk about whatever. If you really want to know about me and why I look different, just ask me.

I don’t want people to be confused. I want people to be curious and I want people to be open, and I want people to understand that we’re all just like you, we just have a few unique differences about us, but we’re still all the same.

Is there a message you want to share, whether it’s to someone on the outside or even someone else struggling with a facial difference?

Be you. Embrace yourself. You are given this gift of a facial difference for a reason, as crazy as that may sound. I believe that I was given a facial difference to raise awareness and spread positivity, and show that we can do anything that we set our minds to, and that anything is possible.

And if you are in a critical stage of your life where there’s a lot of surgeries and you’re going to school while trying to do surgeries, take it one day at a time. But also, if you’re going through a rough patch, find ways that you can have fun in those rough patches, like go out for ice cream or go out with your friends, try to find some normalcy in all the craziness that you’re going through.

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