June 16, 2013 mcfadyena

Redefining Beauty

Trey & Avery en route to baseball!If only everyone could see Trey the way I see Trey… the kind, uber friendly, lover of sports and life, beautiful blue eyed kid that I love with my entire being. Most, however, don’t. They see hearing aids, scars, ports, just something… ‘different.’ If you’re a doctor you’ll see macrocephaly, hepatomegaly, splenomegaly, macroglossia, aortic regurgitation etc. etc. etc. This is what we heard when Trey was diagnosed (we also heard: ‘Has he always looked like this?’ Ummm… you mean my beautiful perfect almost 2 year old?) and it’s what we hear almost every time we see the doctor- there are a few exceptions of doctors who have gotten to know us and Trey so well that they can see both, and when presenting us with information, do it in a humane, this is a person not a disease kind of way, but they are not in the majority.
In doctors’ defence, they often spend so little time with our kids and family and spend so much more time studying diseases, symptoms, test results and how to treat them that I can see how Trey becomes a leaky heart to the cardiologist, abnormally formed vertibrae to the orthopedic surgeon, joint contractures to the rheumatologist, and a death sentence to the geneticist. BUT, Trey is not that, he is SO much more, and a doctor who can spend enough time with our family to speak to Ryan and I as a parents of a child who is no less perfect than anyone else, to Avery and Sadie as siblings to a brother they get frustrated and fight with but would defend to the death, and to Trey as an awesome kid who will accept you exactly as you are, will hold my heart in her palm.
I’d honestly just gotten used to people describing Trey in this way. He has Hunter Syndrome. I thought it was par for the course. I don’t see Trey this way, but I know most other people do. Rick Guidotti has changed this for me. He is a fashion photographer redefining beauty. I’m going to see if he’ll come to Vancouver and talk to BC Children’s Hospital. His two videos below have changed my entire perspective. I don’t have to accept people seeing Trey as a disease (watch out world!). If Rick can see Trey and not feel pity or fear and instead see a kid and person, first and foremost, so can we all.
The first is a trailer for a documentary Rick is featured in called On Beauty.

The second is an interview with NBC. Click here if you want to entertain the idea of redefining beauty, not only for Trey, but for yourself and the rest of the world too.


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