Well, it happened. I cried in public. The worst. I last cried in public seven years ago and still cringe when I think of it. Albeit that time, it was at work, in open court, in a two month sex abuse trial, the judge called me over when I started crying and as I walked back my coworker ran up to tell me I had a hole in the back of my pants and she could see my underwear. That time was worse. However, this time I brought my teary eyes all over the hotel - to the country club standing in a cocktail reception making conversation through watery eyes. In the hotel lounge sitting at a meeting trying to will it away, and finally in the hotel lobby pretty much just openly crying as people walked by. I was rescued by a very kind and loving fellow NPC mom and friend. At least this time no one could see my underwear. As far as I know.
Paul and I were in Tucson, AZ for the Ara Parseghian Medical Research Conference from Saturday until yesterday. The crying took place Monday, but I'll go back to Saturday. Saturday Paul and I went to LAX to go to the conference. We met up with another NPC mom, Rebecca, who had a layover and traveled together to Tucson. Rebecca is a ball of energy and great to travel with. She's been in the community for several years. Rebecca said sadly and solemnly that most of the people who were diagnosed when they got their diagnosis "are gone." She's straddling two generations and carries a heavy weight by doing so. As we sat on the plane Rebecca flipped through her phone quickly showing me photos of kids, past and present, in the community that she cares about, "alive...gone...gone...gone."
Also on our flight from a layover was another awesome NPC mom, Destiny from Missouri, with her one year old who has NPC - who is beyond adorable, see below, and another lovely NPC family. It was a party.
I loved hanging out with this sweet and strong girl.
We arrived in Tucson and made it to the hotel. We immediately went upstairs to a meeting of parents called SOAR, which is a collaboration between a group of family foundations and scientists to identify, coordinate and fund important research areas to help accelerate a cure for NPC. It was an honor to sit side by side with these people and I have to say, scientists are really nice. I also have to say, I am still not very good at science. My uncle graduated early from high school, got a scholarship to MIT for science and engineering, my dad was accepted to Columbia University for engineering and had many science and math awards - although his Bronx PE class did make them swim in the buff which is a story for another day. I had a Chemistry tutor in high school and took algebra three times. I did get an A+ in Women's Literature and was great at social studies though, just throwing that out there.
The meeting was about three hours and during the meeting break we somehow came away with a beyond belief complimentary room upgrade. Seriously, the Westin La Paloma and the manager on that day are so kind and reached out with upgrades to some of the families out of kindness.
Not to be a total love fest, but Sean Kassen who helps manage the Ara Parseghian Medical Research Fund at Notre Dame and Cindy and Mike Parseghian who started it are some of the nicest and deeply inspiring people, they made us feel so welcome and comfortable right away. I was also able to meet my NPC friend and mentor, Pam Andrews, in person who has been coaching us through this process and other NPC families which almost felt like meeting celebrities. Every single person was welcoming and instantly felt like a new family.
I won't go through and list every person I met and my impression of them because I'm pretty sure that would be really awkward, but on the personal front - it was really extraordinary and I am so inspired by the warmth and passion of the families and scientists we met. We couldn't feel more grateful or supported on that front, and our kids are lucky to have every individual there fighting for them.
Above: a gorgeous NPC mom with two beautiful and strong NPC babies
After the SOAR meeting we went to dinner and got to start the process of getting to know the other families better. See above for how awesome they all are. After dinner was a presentation which I didn't really understand. I also am pretty sure I need eyeglasses since Rebecca kept whispering to me, "my son is number blank on that chart," and I'd squint my eyes at the screen and think, "where are the numbers?" To do: get my glasses to complete my transformation away from my younger and hipper self.
The presentation ended and led to more networking and an exhausted nights sleep. Our suite had a jacuzzi which I did go in and fell asleep in, thanks Paul for saving my life on that one. I didn't go in the jacuzzi again because I decided I didn't want to die by drowning in a jacuzzi in Arizona; however, I did go sit by it a lot and enjoyed the view. To do: don't die.
Above: the jacuzzi.
The next day was a whirlwind of presentations and meetings as was the next. We did a news interview for ABC Tucson Monday morning with an awesome reporter, the ever gracious Cindy Parseghian, our Chicago hero Dr. Kravis and a wonderful family who are also newly diagnosed. Cindy Parseghian and Dr. Kravis are two heroes - there are not enough nice words about them. During the interviews a non-NPC family got off the elevator and were talking really loudly, the daughter shhhed her mom who said loudly, "don't SHHHH me, I'm not at the movie theaters, I can talk as loud as I want," even when she saw the filming. What a peach.
Paul flew home Monday. Monday by about mid day it hit me that Marian might die. I was sitting and listening to people talk and thought, I'm never going to understand this, there are so many things wrong with Marian and we can't fix all of them. I started walking down the hall thinking of charts and graphs and Marian's little face, her smile, and her potentially, possibly unavoidable fated suffering. It was not a high point.