Opening Address for the 2008 HPE Conference

21 Jul

I wanted to share a little more about my favorite parts of the HPE conference. On Friday, July 11, I awoke at 3:10am. As I was trying to fall back to sleep, I had a sudden realization that I was scheduled in the conference agenda to publicly welcome and address the conference attendees during the morning session. I arose from the bed and stumbled in the dark to the desk in our hotel room. With only 2 hours of sleep and hardly the ability to even remember my own name, I sat down in front of my laptop and prayed for something meaningful to say to our HPE families who had traveled so far in their journeys with their children. The following is the answer to my prayer:

Welcome to Indianapolis! You may have heard of a little race we host known as the “Greatest Spectacle in Racing”.

I Googled the word “spectacle”; in general “spectacle” refers to an event that is memorable for the appearance it creates. This weekend, you are part of a spectacle—only this is the “Greatest Spectacle in HoPE”!

An uncle of mine would always say, “Let me put on my spectacles,” when he wanted to take a closer look at something. Let’s all put on our spectacles and take a closer look around this room. Do you realize that every single parent in this room has sat in a hospital room or a doctor’s office and heard the devastating news that their child had holoprosencephaly? 17 letters, 7 syllables, 1 word that would change everything.

Yesterday afternoon, I noticed two men entering the hotel lobby—one wearing a sports coat, the other wearing a very intellectual-looking bow-tie. They glanced around as if they were curiously looking for someone. I was anticipating the arrival of some of our conference presenters, and since they sort of had that “deer in the headlights” look on their faces, I timidly asked, “Are you here for our group?”

One replied, “No, we’re here to pick up a colleague for dinner, but we’re curious about your group.” I turned around so that I could see what they were seeing which was a hotel lobby filled with wheelchairs and people having a wonderful time—with laughter, smiles, and hugs.

I said, “It’s holoprosencephaly.” To which they both replied in unison, “Really?” In my mind, I was thinking, “They’re not here for us, yet they know what holoprosencephaly is? That never happens!”

So, I asked the obvious, “You’re familiar with the condition?”

What I discovered was that these two men specialized in oncology—and they were both OB-GYNs!

These two doctors walked through the hotel door seeking a colleague, and what they witnessed instead was a jaw-dropping, eye-opening sight. They didn’t see devastated families—they saw laughter and celebration. They saw children in wheelchairs who were smiling and were very much the center of attention!

Because you were busy enjoying yourselves, you weren’t aware of it, but they saw it! They walked through those hotel doors, and you all smacked them in the face with HoPE! So today I say, “Welcome to Indianapolis. Home of the Greatest Spectacle in HoPE!”

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