When you first hold that baby, he is perfect. Small and beautiful and perfect.
And the first time that someone tells you he isn’t perfect is hard to swallow. Not only is he not perfect, but he is very, very different.
As parents, we can accept that our child is different and constantly notice their deficiencies in the world’s eyes, or accept that our child is amazing and constantly celebrate the difference.
Sometimes that is harder to do than others, but for someone like Rick Guidotti, it has become a passion.
A Different Kind of Perfect
A fashion photographer to people like Cindy Crawford and magazines like Marie Claire, Rick founded Positive Exposure in 1997 when he saw a lone girl with flowing white hair and luminescent skin waiting at a bus stop. She had albinism. Rick began an amazing campaign eventually featured as a cover story in Life magazine that highlighted the beauty one can see in the condition if they just stop and look.
Since that time, Rick has shared his photography skills with other groups of genetic conditions, casting a glow instead of a shadow on their difference.
And we were blessed for him to share his skills and passion with us.
We were incredibly excited when Rick drove up to our house in the woods in May 2012. Full of energy, Rick radiated excitement and fascination with the whirlwind that is … our Case. I privately wondered if his camera could keep up. But it did.
And when Case went for his trusted Santa costume, that ratty Santa costume that he has worn almost every day since the previous December, I flinched. I’ll admit it. Even though I let him wear the Santa costume every day, to the grocery and beyond, I wanted my child to look his best, beautiful, for these photos. But therein lies the rub.
Case does not look incredibly different on the outside. While Hunter Syndrome can cause significant physical difference, this increases with age and has also diminished with current treatments. But Case is still incredibly different on the inside. And it is that inside that embraces the love for a costume, even if it is ratty and frayed.
So while I, his mother, flinched at the breakout of Santa in May, Rick did not. He embraced the difference.
And in doing so, he was able to capture my true child.
And for that, I’ll be eternally grateful.
Hunter in Focus
If you’re in the NYC area, I hope that you’ll visit the Hunter in Focus exhibit this coming Friday, October 26, 2012 in Grand Central Terminal from 8am-7:30pm. Given that Case was diagnosed because of an awareness event (my mom seeing an episode of Mystery Diagnosis about a boy with Hunter Syndrome), these opportunities to raise awareness are very important to us.
Please read the fabulous interview Rick recently gave the Huffington Post about the upcoming exhibit (includes a photo array of boys from the exhibit) as well as watch a recent TedX Phoenix talk he gave.
Bonus picture (if you made it this far):