The Day I Met Rick

Play song, "Man in the Mirror" with this post

Just so you know, this post was written, rewritten and tweaked again and again in the last two weeks. And I still feel apprehensive about posting it, because I still don't feel like I've done it justice. But the reality is, I will probably never feel like I can do it justice. So I'm posting it, but please keep that in mind.

I was literally floored by some of the responses to the last post I got. I had so many people ask me about this man, Rick.... and I realized I have never really shared my knowledge of this most remarkable human being. It's sad really that I haven't, because really he is one of the best people I have had the pleasure to meet.

Rick doing what he does best: capturing the world as he sees it through his camera
*photo courtesy of Mark Sogard*

So here it goes, I'm going to do my best to explain how I feel about this guy, and what he is trying to do with the world.

I will first take you back to nearly 3 years ago when Emarie was still a tiny baby. We knew of her diagnosis at this point, but still had a limited knowledge of what we should be doing for her. There were of course the obvious specialists that we were recommended to see, and for the first 6 months, we were preoccupied doing all that we thought we needed to. Seeing the orthopedic specialists, the cardiologists, geneticists, and some others. The one where our story starts though is the cranio-facial clinic, in other words, the cleft palate clinic. This is where you meet with the team, which consists of a plastic surgeon, an ENT, a speech therapist, and a pediatric orthodontist. Our first visit went great when she was 2 months old, and we scheduled and took care of her first prosthesis when she was 2 1/2 months old. It wasn't until her follow-up that we began getting the notes the doctors took, sent to us in the mail.

How I felt about my daughter when I first laid eyes on her, is nothing short of unconditional love. I did not think anything of her appearance, other than her chin and nose were small. But I saw them as endearing and really she was the most beautiful thing I had ever laid eyes on. That's why it came as such a shock when we were told of all that they thought was "wrong" with her. All I could see was my beautiful daughter, that I had waited so long to meet. But nothing could prepare me for what I read in those Dr's notes some 5 months later.

"Emarie has significant, visible facial deformities and is abnormal in appearance" exact words from a pediatric orthodontist.

To say the least, I was shocked, sorrowed and deeply hurt by these words. I couldn't see it at all, no matter how hard I tried. She looked perfect to me, but was that just because I was her mother? That she grew inside me for nine months, and was essentially a part of me?

And I couldn't let it go... that is, until the day I met Rick. It was about 2 weeks after receiving this most heinous note that we headed to our first ever Chromosome 18 Conference in San Antonio, Texas. And thus where we met Rick Guidotti the former fashion photographer. I cannot even describe in words the awe I felt while sitting through his presentation which was my first impression of him. Sure we'd heard his name from others at the conference asking if we'd met Rick or had him take our daughter's picture yet. I'll have to admit that after I saw..... no, experienced his presentation, I was a little intimidated. I didn't know what to say or do after that (if you want to see a presentation similar to the one we saw, view the video below).

But I will say that nothing surprised me more than his first words to us as I held my tiny 6 month old baby in my arms.

(this part barely above a whisper) "Look at her" and then he actually gasped, "how do you get anything done? You must just want to stare at her all day"


I had to think, "is he for real?" But I could see it in his eyes, and it was like he could only see her. I saw him looking at her through my eyes, which was nothing short of remarkable. It was hard to hold back the tears as he photographed my girl and captured her in a way that no one had before.

This picture actually appeared on an online medical journal article

And FYI, I could not get my hair to cooperate in the humidity!!

He really brought what we her parents saw in her to life. I can never thank him enough for that. I knew it, that my daughter truly is beautiful, and I was never going to allow anyone to make me doubt what I knew to be true again.

Click Here to see more/better quality pictures from the 2008 San Antonio conference. And password for this one is "Texas"

Emarie can be seen in pictures: 0014, 0017, 0043, 0068, 0101, 0117, 0133, 0291, 0297, 0306, 9985, 9983


Our experience at next year's conference in 2009 was no different, except maybe better. This time we were eager to have Rick photograph Emarie, and he captured her in many ways. Playing in the pool and with her daddy. 

Click Here to see more pictures from the 2009 Vegas conference. And password for this one is "Vegas"
Emarie can be seen in pictures: 6587, 6584, 6576, 6527, 6517, 6513, 6506, 6492, 6484, 6482, 6476, 8090, 8096, 8097, 8098, 8101, 8145, 8480, 8526, 8529, 8556, 8568, 9278, 9280

 To learn more about Rick and his mission, please visit his website Positive Exposure

I need to hold onto the way Rick made me feel about my child. And we all should embrace the world that he is so desperately trying to create. So, watch out world, you are all going to know him one day, because of what he is working so hard, and in many ways succeeding at.... and that is changing the world. I really wish there were more Rick's in the world, because I think it would be a hell of a better place. If every person could see the world through his eyes even for 5 minutes, I'm certain that lives would change. He's one of the few people I know actually taking a stand to end stereotypes, discrimination and just plain ignorance. I commend him for that alone. And I say "that alone", because he is doing more, so much more. 


*All pictures used on this post with permission by the owners :) Thanks Rick and Mark!*