Meeting Olivia

I was born with Pfeiffer Syndrome, a rare condition which affects only 1 in every hundred thousand births. I had 13 surgeries in my first 14 years of life, the biggest one being the reconstruction of my face when I was in 8th grade. I had lived my entire life not ever meeting anyone else who shared the same condition. Someone else who had their bones cut apart and screwed back together. Someone else who sat on the side of the bed while their mother cranked the bones of their skull apart, trying to offer comforting words through her own tears of pain and fear. I had found a community on Facebook a number of years ago and chatted with people occasionally, but nothing had really come of it.

Sometimes, even on an ordinary day, moments happen that change your perspective. It was a typical Friday night: four of us sprawled out on the couch with sodas and pizza watching TV. We all seemed to be reaching the food coma state of the evening where everyone is staring blankly at their electronic device of choice while the large screen of the television glows and murmurs in the background. It was the end of the semester and no one had much energy or brainpower left.

Scrolling through my Facebook feed was nothing new. I could do it in my sleep; in fact I may have been, given the state of things at that particular moment. The screen scrolls up; I’m not really reading, just skimming, as if on some sort of college student half-asleep Friday night autopilot. Then something finally catches my attention: the Sanborns are on their way to Maine! I make a quick comment out of curiosity which would end up changing my life forever. The Sanborns were one of the first people I connected with who understood. They have two young daughters. Olivia is in the 5^th grade. She loves animals, ballroom dancing and softball. And she has Pfeiffer Syndrome.

 Where in Maine? I ask. Within a few minutes I have a response. Wells. What I wanted to say was “Wow, come visit; I would love to meet you!”, but I did not want to sound crazy. They probably had plans anyway. I set my excitement aside, and simply hit the like button. Another comment appeared: “Where are you again?”…“Old Orchard Beach”. Long pause.

Ah! She finally replies, “Is that like an hour away?”…“About 30 minutes” I reply. At this point I was picturing Laurel at the other end, considering a meet-up to be a possibility, but still I did not want to get too excited. Then finally after what seemed like forever, the moment I had been waiting for appears on the screen: “We are eating at Mike’s Clam Shack tomorrow night if you want to join us.” “Yes” I reply, without as much as a thought. We work out some of the details. It was then that she expresses great enthusiasm, and I know that the overwhelming excitement was mutual.

I close out of Facebook and look around the room again. No one had moved. It felt like a lifetime since I had surveyed the half-eaten pizza and the friends mesmerized by their phones and their tablets, and the hum of the large screen TV that no one seemed to be interested in. Nothing had changed. But to me, the room seems brighter, more vibrant, less “exhausted college student” and more “adult who had amazing opportunity in life”. It is incredible how quickly things can turn around simply by changing perspective.

That morning, I saw each of the Sanborns’ activities as their posts appeared on my news feed. They took several pictures at each stop as the time of our meet-up drew closer. As my excitement continued to build, so did my nerves. How was I going to act? What questions did I want to ask? Did I want to ask questions? What if I do something stupid? I was driving myself crazy. What if they don’t like me? What if they have trouble with my weight, or the fact that I’m gay? Would I bring Amy with me? She is my wife after all! How could I hide something, or someone, which defines so much of who I am? It was strange how these thoughts seemed to overwhelm the main connection, the main reason for the meeting in the first place. I share something with them that for my entire life has made me feel alone in this world. We already shared a common bond that made all the other stuff, all the other shit that everyone worries about when meeting people and fitting in, seem trivial.

Finally the moment had arrived. I took in one last deep breath and straightened my hair in the visor mirror as Amy and I pulled into the dusty parking lot. She looked at me and smiled. “This is going to be good” she said, picking up my hand and squeezing it tight. I could see that she too was nervous. She knew what this meant for me. She walked behind me up the long stone pathway. Olivia and her sister Amelia were watching for us through the window. Before I was close enough to open the door, they grinned at us through the fingerprint-covered glass. I grinned back, and my fear melted away.

Once inside, the sisters greeted us each with big hugs. It was as if I had known these girls forever. They lead us to the table where their parents were waiting. More hugs. The vibe was less like an awkward first meeting and more like a family reunion. As we all squeezed into the booth, all I could do was smile.

Our next meeting would be in Vermont, when I had to go home after suddenly losing my father. I found solace in another meal with them. I kept forgetting we had only met once before. We laughed together and talked. Olivia had the amazing ability to make me laugh and forget for a moment the real reason we had traveled the 211 miles on a weekday. They told me that they wanted to attend the service. I was overwhelmed by their desire to support me in a way that was so personal and profound. They never had the opportunity to know him, and yet our connection was so strong that they made the service a priority.

The next morning my family and I pulled up in front of the church. We were greeted by the priest and the funeral director. I saw my brother, his girlfriend on his arm, talking to people as they entered the chapel. Amy was already playing the organ and the music carried out through the wide open doors down State Street. After instructions from the funeral director, I took my mother’s hand. We lined up as if in procession; behind us the rest of the family followed suit, and we started up the steps and down the aisle.

It was overwhelming. I blocked out the sound of the music and the colors of the glass which bounced off the walls. I blocked out the 400 faces that were all turned in our direction. The aisle seemed to go on forever, and at the end of it was my father in a small granite box, and his choirmaster robe draped over the altar like some reference to Jesus or something. It was all too much! As we made the long walk toward the front of the church, I saw someone out of the corner of my eye. It was Olivia smiling at me! I couldn’t help but smile back at her. I wasn’t so scared anymore after that.

Sometimes, even on an ordinary day, moments happen that change your perspective.  The day I met Olivia and her family at Mike’s Clam Shack on an ordinary Saturday, I went from being the only person I knew with Pfeiffer to a part of something greater. Never before had I been able to explain the condition in “we’s”; I always used a very isolating “I”. It was an instant bond between two people, two families, which has changed my perspective forever.