Not So |"Different" An Important Lesson In Our Journey

I get emails all the time from parents with children newly diagnosed with PHACE Syndrome, or hemangiomas and one of the most common questions is "how do you cope with your child looking so different"

This of course is not an easy question to answer because as parents of children with facial differences we go through a range of emotions once the shock settles in, and it is a constantly changing thing.

It was never the focus of our concern because Quinn had so many other medical and developmental issues that were more pressing, but that is not to say that we did not have our fears as well.

Growing up with a brother who was developmentally delayed I quickly learned that "ignorance breeds idiocy" People are afraid or "turned off" but what they don't know or don't understand. It was this lesson that made me want to help people understand "what's wrong with Quinn"

This wasn't an easy decision but it seemed to be the right one for us, to address the issue head on. As a result when we published Quinn's birth announcement we decided to add a picture and a description of his disorder. I also included a link to his original carepage in case anyone wanted to learn about PHACE Syndrome. I didn’t really expect what happened next. I didn't expect over 1,000 people from around the world to begin following his story. I didn't expect the newspaper to call and want to do a story on Quinn.

I am going somewhere with this I promise.

The initial curiosity I know was attached to his appearance. As countless doctors in this city have told us “nothing like this has ever been seen here” When I look back on pictures of him now I see it. It (his face) was something.

That something helped us to decide that regardless of how different he looked and the many difficult situations we would face, we were not going to hide him or treat him any different than we had our older children.

We of course have had some insane situations with rude people over the years. They have gotten better but different as time has gone on. In other ways they have changed. When a waitress or cashier tries to get Quinn to talk they are often puzzled as to why he does not speak (or in some cases he tells them off in his own little way when they invade his personal space) When people see him in the daylight his scars are very obvious and this often results in puzzled looks. In a few cases we have even been asked “Is that the Mighty Quinn?”

One thing that often troubles parents of children with hemangiomas, is how will my child succeed in entering school without being targeted as different? How will the other children accept my child if he looks different? Parents worry that their child will be emotionally scarred for life.

I can tell you now from experience that some of the things we are most afraid of surrounding our children's differences, are the things that enable their acceptance by their peers. In Quinn's case his differences even seemed to lead to a “rock star type of treatment” In kid you not.

Children have evolved over the years, and they are certainly more accepting of children with differences than they were in the past. Gone are the days when a group of kids would chase a child home taunting them about their brother....and I HATE this word....”being a retard”
Because of the inclusion of children with special needs, their peers have come to not only accept them, but to embrace them and want to protect them. Fortunately this is true of Quinn's transition to school.

Many of older kids in Quinn's school were exposed to him early on and have seen his transition over the past 4 years. Many of them prayed for him when he was very sick. Over the years the younger kids would meet him and ask the inevitable “what happened to his face” We always met that with a simple answer, to which most kids would reply “oh..okay” and then never ask again.

The kids also know he has Autism, and that while he does not have any negative or aggressive behaviours, he does not like people “in his face” If people get too loud he will plug his ears and briefly scream. And...he is a man of few words, but we are working on that.

There is a lot about Quinn that is overtly different. His face, his social skills, his development and his size. He is a lot smaller than his peers. Given all of these things you would think...traditionally, that he would be an easy target for bullying, but it is not the case.

I applaud Quinn's teacher for preparing the class for his arrival (He began Nov 1st) She gave the kids an idea of what to expect and we are told that they were excited to meet him.

I have to tell you I have never met such an amazing group of kids, and in saying that I include not only the kids in his class, but the entire school. Of course being his mom I have a bias but I forgot about his ability to charm people with that smile of his. (and to think he has issues with social skills)

On his second day of school I walked him into the schoolyard with his two big brothers and as we entered the yard I heard a sort of chanting “Quinn, Quinn, there's Quinn, hi Quinn!” coming from a small group of students at the front of the school. They were obviously happy to see him and in that moment every fear I ever had of how he would be accepted just disappeared. When we got to the back of the yard close to 20 students of all ages began to approach (I held my breath because I was afraid that it would upset him...but I was wrong, he was grinning ear to ear) There was more “Hi Quinn, are you going to come everyday....yeah Quinn is here....he is SO cute...to even I love you Quinn”

Thank God I had sunglasses on because tears were just pouring out of my eyes. (Being pregnant with twins and having twice the hormones doesn't help either.) I looked at my son as all the craziness he had been through flashed through my mind and I realized that these kids had done more than just accept him. Whatever differences they may perceive him to have, or not have, they have embraced him and welcomed him as one of their own. They show no scorn, or dislike. They like him for who he is and they see what we have seen all along, that while he may have had an extraordinary journey so far in life, he is simply a beautiful little boy named Quinn. One of their own, a peer, a friend and someone who is “not so different” after all.

I hope this gives some hope to all of the parents out there who are concerned about how their child will be accepted once they start school because I know it is a very real fear, be it facial differences, developmental, physical, medical etc. On paper Quinn is VERY different but in reality, in school, he is just one of the class. Too much is focused on disabilities, something we as parents concentrate more on, but the reality is that other children are more able to see what adults do not, a special child's “abilities” Sure they may appear different for all of about 30 seconds but young children are able to see past that and see what is more important, the child behind what is on paper, or what is on their face.