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?}