Saturday, September 13, 2008

1p36 2008 Conference

We are exhausted from a wonderful day at the 1p36 Deletion Conference 2008 in Boston. It was a great experience and we met alot of amazing people and even more amazing kiddos! They were all so sweet.

The day started with breakfast and showcased 3 great speakers throughout the day. To see some notes on each speaker, visit Nate and Melanie's blog. The conference ended with discussion about the date and location of next year's conference. Indianpolis, Utah and Oklahoma City were the final candidates for 1p36 2009.

We capped a wonderful day with a great Italian meal with our new friends Stephen, Karen and Aiden (1p36) from New York.

More to come tomorrow. For now... some pics from the conference today...

Friday, September 12, 2008

A True Blessing!

It's Friday evening and Julie, Lily and I are winding down from our day of traveling to Boston. We had the opportunity to have a brief Meet-n-Greet with a bunch of the other 1p36 families and kiddos. Wow!... we are so blessed to have this amazing group of people!

While we are still letting it soak in... we are humbled by the sense of peace and comfort we have for the folks we met tonight. We are not alone. The 1p36 families we are meeting this weekend are special people who know exactly what we are going through and will support us along our journey. Of course our family and friends will support us as well, and we love and cherish them for that support, but there is no substitute for people who are caregivers of children with 1p36 Deletions. Each and every one of them is raising a sweet little angel just like Lily.

We did not quite know what to expect as we walked into the room at the Meet-n-Greet. We were so eager to hear about everyone's experiences with their 1p36 angels. It was great! It was also kind of funny in that we were meeting people we have read about and chatted with via the Yahoo Support Group or their Blogs for the past 5 months. We felt like we were backstage at some rock concert getting to meet the performers.

"Look Julie, over there, it's Nate, Melanie and Whitney!... he's like the Founding Father of 1p36 Blogging... and he's 15 feet way from me!" I felt like walking over to Nate and asking him for his autograph!

The power of the Internet is really remarkable. Going back to that day in April when we got the call about Lily's diagnosis, I pulled up Google and typed in 1p36 Deletion. One of the first pages I found (after all the scary stuff that told us how bad off Lily was going to be) was Nate and Melanie's page about Whitney. Here was a real family who has already gone through what we are going through. They were telling their story openly, posting it on the Internet for others to share and providing a quick glimpse as to what we might expect. Through their posts, we realized it was going to be OK. How cool is that?!

It was a real treat to meet Nate tonight, shake his hand and thank him for the comfort he provided us in our difficult time. Pretty special. Looking forward to tomorrow.

As for the travel, Lily did great! No problems on the plane whatsoever. Julie bought her this $5 toy that lights up and makes noise. It fascinated her the entire trip. Best $5 we ever spent. Smart Mom. More to come on Saturday.