On having Apert syndrome: An interview with my 5-year-old

My son Aiden was born with Apert syndrome - a craniofacial condition that is characterized by physical differences in the way the head, hands and feet were formed during gestation. The bones that make up his skull fused prematurely meaning they do not expand on their own as he grows. In addition, his fingers and toes were fused together and he is missing one of the knuckles in each digit. This isn't something you see every day. In fact, Apert syndrome occurs only once in every 160,000 births. This means on average, of 4 million births in the US annually, only 25 are born with this rare condition.

We didn't know ahead of time (you can read more about Aiden's birth story here -- or watch us tell the story in this short film here). The doctors who delivered Aiden were just as shocked as we were. We found out afterwards that of all the neonatal doctors on staff in the NICU, only 2 had ever cared for a baby with Apert syndrome in their entire careers. To say he was born different is not an exaggeration. It is a reality. His reality.

From the very start, Ricky and I bottled up our fears and put them on a shelf so we could focus on Aiden's immediate medical needs. The first 2 years were chock full of appointments, hospital stays, research and surgeries. We barely breathed. Inevitably, the emotions eventually bubbled over and came pouring out once the dust settled. We had been so consumed with the medical side of his care that we never allowed the rest of it to sink in.

You see, I could schedule appointments or dose his medicines according to instructions. I could stay up all hours of the night to listen to his breathing or change post-surgical dressing changes. Sure, that was hard on this momma's heart, but it's not my heart I'm worried about. It's his.

As Aiden's mom, I worry if we are going to be able to raise this little boy to be happy. I am scared that others will not accept him despite his differences. More importantly, I am terrified that one day he will not accept himself.

For 5 years Ricky and I have made the conscious decision to treat Aiden no differently than we do his older brother Ethan. We don't baby Aiden. We don't do things for him without first pushing him to find ways to do things himself. He has to pick up his toys, eat his vegetables and do chores just the same as any other kid. His condition may present challenges. But it will never be an excuse.

As the boys have gotten older, Aiden's physical differences have become a topic of conversation in many social situations. There is pointing, staring and many times comments and questions from other kids while we are at the library or the park or a restaurant. So while we have worked so hard to ensure that Aiden feels no different than anyone else, the reality is, he is going to have to deal with a much more critical audience in the real world. For this reason, we have started discussing his differences with him at home.

I used to cringe at the words 'Apert syndrome'. I hated the sound of it coming out of my mouth. But...eventually we decided that in order for Aiden to develop self-confidence, we needed to stop being afraid of those words. If we want Aiden to accept himself fully, then Apert syndrome can no longer be something we associate with being bad. It's simply a phrase that describes his medical diagnosis. It does not define who Aiden is at heart.

When appropriate, we talk to the boys about Aiden's differences and always answer any questions they may have. A few times Aiden has asked why his hands are "big" or why he has to have surgery and after the initial dagger to the heart, we have found that answering matter-of-factly seems to be the best way to go. We tell him that God made him beautifully and perfectly and every single person is different in their own way. We explain that he needs surgery to give his brain room to grow so he can continue to learn all there is to learn in this world. So far, these answers have satisfied their innocent questions.

In an effort to gauge how much Aiden truly understands about having Apert syndrome, I decided to turn the tables and ask him some questions. I was curious to see how he feels about it and to figure out if the increasing number of sometimes awkward social encounters are impacting his self-confidence. The conversation went as follows:
Aiden, what is the best thing about having Apert syndrome? I'm handsome.
What is the worst thing about having Apert syndrome? The sleep studies.
How does it feel when people say mean things? People say "your face looks funny" and it makes me feel sad.
What do you say to them? I say "that's not nice, God made me this way."
What is your favorite thing about yourself? I'm smart.
What's something you're good at? Running.
What is something you need help with? Buttons.
How do you feel about your hands? I like them. But a friend at school said "your hands are fat" and I felt sad.
What is something you wish you didn't have to do? Go to the doctor.
What is something you like about surgery? Dr. Fearon has toys in his office.
What is something you don't like about surgery? Missing school.
Why do you have Apert syndrome? Because that is how God made me.
How do you feel about having Apert syndrome? Good. God made me this way and my mommy and daddy love me.
As you can see, I've got nothing to worry about at this point. I've got one smart, self-aware and confident little guy on my hands : ) If only he would stay as positive and carefree as he is at 5.

Aiden starts kindergarten this fall which means an entirely new world of being away from me every day, playground bullies and learning how to stand up for himself. I'd be lying if I said I am not already feeling anxious about this. I asked him if he wanted me to come in and read the "All About Aiden" book to his new friends at school in the fall and I got an emphatic "yes" which I feel will be a great way to help kids understand both how Aiden is different, but also how really he is just an ordinary kid.

Of course we all know...Aiden is FAR from ordinary : )

{If your child has special needs or a physical difference, I would love to hear how you address it with them. Do you discuss it only when they ask or do you bring it up in an effort to make them aware?}


  1. Our almost 5 year old has a hemangioma on her face. We've been talking to her about it for as long as I remember. She can say the word & knows what it is, but it still bothers her to be different. I'm anxious to see what kindergarten brings this Fall, but hopeful that we've given her enough tools to deal with any taunts that might come her way. Thanks so much for sharing Aiden's story and voice.

  2. Taryn,

    What a beautifully written post! I cried after reading Aiden's interview.
    I think you are doing everything right for his world, and he will end up being more confident because of it. What a great mommy you are!

  3. You are an unbelievable mother and give us moms so much insight...anytime Ricky posts these on FB I go to read them and each time I am just as emotional and amazed at your writing skills! Keep it up...you are helping so many others in the process!

  4. I just love his answers! It's very clear that he has loving parents and family! I love that book you made for him and hope his class next year love him as much as we do!

  5. Love, love, love your little guy!Thanks for posting this beautiful interview with your amazing son. Our daughter Ayshe is 4 with Apert syndrome. The stares and comments are difficult but we are trying to surround her with many people who love and adore her and build her sense of self-worth as you are with Aiden. Thanks so much for sharing with us. He is beautiful!

  6. Love love love this! He has a beautiful heart and you're doing a great job making sure he knows that God made him the way he is for a reason. He is a world changer!


  7. A former student had a large port Wine stain birthmark covering much of one side of his face. His mother explained that she told him the story of the Persian carpet-makers. They are masters of their craft, capable of making a perfect rug, but they never do--always including a small imperfection to reflect their belief that only God is perfect. She told him that every person has some imperfection too, but he is fortunate that his is something like this, which does not affect how he is as a person, instead of a less visible imperfection of character which can make some people ugly on the inside.

  8. I also loved your post. Hiding the facts from your intelligent little guy will inly protect him for so lobg. I think (and hope) you will be pleased with what you see in kindergarten. Today is a new time... much different than 20 and 30 years ago. My children dont see any of their peers as weird or ugly or damaged.... just that EVERYbody is different... its truly awesome to see the young kids completely accept each other for who they are!!! I really think it will make you proud of our future... now... fifth grade... that's a different story, but at least you have time to make your son even stronger!!!

  9. What a beautifully-written, heart-felt story of a portion of your journey with Aiden! I have a 27-year-old son with multiple special needs, and your experiences in so many ways mirror my feelings and thoughts. You are doing an amazing job of mothering this very special young man you have been gifted with. God bless you all!!!

  10. Sounds like a happy boy to me!

    We actually don't talk much about Jack's differences, not any more than his sameness. I imagine he'll have more questions as his awareness of others grows.

  11. He sounds like an amazing little boy! And he is absolutely adorable. :)

  12. I had to watch his video introduction a couple times because he's just too cute...or handsome I should say in his own words. I love his answers too-you guys must be so proud of him!

  13. I love this post. Aiden is so handsome! Thank you for sharing.

  14. Taryn--This is a beautiful piece, so touching, and beautifully written. I appreciate that you steer clear of sentimentality both in your writing and your discussions with Aiden. I feel for you with kindergarten coming up. It's a big step for any parent but especially so for you guys. Please keep us "posted."

  15. That kid is amazing! He is an awesome, confident kid, and he's fun to be around. He will prevail.

  16. mama bear, you are an amazing woman. Your little boy is super lucky to have come into your family. Although he will have many challenges with acceptance in his life, he is learning all the right things from you, you are doing a great job. I will be talking to my 6 year old tomorrow about this, my heart would be broken if she was ever mean to someone just because they looked different. best of luck to you

  17. I just posted but I forgot to say that your story really moved me. You are really gifted at writing and your web page is REALLY good. I stumbled upon your page by doing a search on the Dr. Oz detox and then spent A LOT of time reading your blogs. So I just wanted to say that you have succeeded in educating someone in Edmonton Canada and you are doing a great job sharing your story. God bless!

  18. Thanks for the support everyone! :)

  19. Your posts are really inspiring for me as a Mama to children with special needs. I haven't really mentioned it before but two of our girls have a syndrome that makes them different from typically developing children. At 3 1/2 years old, they don't know the name of of what they have, but I have explained a few things to them as they are relevant. Like they are often called babies by other children, so I have started teaching them to say, "I am 3. I am a big girl." And I have started explaining why they go to certain doctors and receive a certain medication. It's hard as a Mama because I don't see them any differently than their siblings without special needs, but I know the world doesn't always see them as normal. Right now, they are just so happy, and I wish I could bottle that up and save it for the times when they might be made to feel badly for who they are.

  20. I said it in my last comment but it bears repeating. You are an awesome Mom! You have obviously raised your boy with such a sense of self and purpose as a child of God. I hope that my children feel so loved and special to God.
    Pretty savvy kid there!

  21. I watched your video a few minutes ago with my three year old daughter, she asked to watch the video "of the boy with the big smile" again. You are doing an amazing job and your son is an inspiration. I love reading about you guys!

  22. Taryn,

    Wow, this is such a great blog. A few days ago, some of our best friends gave birth to a boy with Apert. They have a 1-year-old girl at home and are currently reeling from the news. I found your blog and will pass it along to them. It's so informative and inspiring! Thanks for adding something so valuable for parents and friends of children with Apert.


  23. Kara - Thanks for commenting. Please tell your friends congratulations...and give them a hug! If they ever want to chat or have any questions at all I am an open book. Just have them shoot me an email: moreskeesplease{at}gmail{dot}com.