PCC 2014

Earlier in the month we spent 5 days and 4 nights at the incredible Gaylord Opryland Hotel in Nashville, TN with our extended EB family.

It’s hard to believe that just a few months ago Joe and I were discussing whether or not we should even attend the PCC.  I went when Ella was 3, but it was a crazy visit and for various reasons we didn’t get to actually participate in much of the conference.  The next PCC (Patient Care Conference) was in Orlando, FL when Ella was 5.  Due to several reasons we decided not to attend that year.  So given those 2 experiences, we weren’t sure how important it would be for us to attend.  We ultimately decided to go because Ella started asking about other kids with EB.  She wanted to know why she didn’t see any other kids that look like her.  We decided that the PCC was the perfect opportunity for her to meet other kids with EB and know she’s not alone.

I will never forget the look on Ella’s face when I told her that I had signed her up for the PCC kid room.  I told her that it was a special room for kids and that several of the kids in the room would have EB just like she does.  She got a HUGE smile on her face and said, “You mean I won’t have to tell them to be gentle because they will already know?  And they won’t stare at me because they will have EB too!” 

We arrived in Nashville on Wednesday July 30 and headed straight to the hotel.  I can honestly say that this is the most amazing hotel I have ever visited!  We have a Gaylord in DC and it’s really nice and pretty incredible, but it’s about 1/3 the size of the Nashville Gaylord.  This hotel even has a boat ride INSIDE THE HOTEL!  Seriously, it was amazing.

It was wonderful seeing old friends and people who I have only met online through my EB groups.  Seeing these people it’s like we have an instant bond.  There’s a language that only we speak.  There’s a life that only we understand.

I think the biggest transformation I saw was in Ella.  Oddly enough, even though we live in one of the most populated parts of the country, there aren’t any kids near us that have EB.  There is a boy in Arlington, but he has the most mild form of EB and his body doesn’t have to be wrapped at all (if you saw him you wouldn’t even know he has EB) and we’ve actually never met him.  There was another baby about an hour from us, but unfortunately she lost her battle with EB.  So, as far as we know, Ella is it.  The closes family we know of is about 2 hours away in Maryland.  We have been fortunate to get to know them and see them several times, which has been good for Ella, but she’s only a baby (not yet 1 year) and Ella really wanted to meet other kids her age.  I make an effort to meet up with families when we’re traveling, but for Ella it just isn’t the same.  She needed to know that there are other kids out there just like her.

On Thursday morning when I dropped Ella off at the kid room it was the first time in her life that she walked into a room, alone, without hesitation, and confident.  She didn’t ask me 100 times when I would be back for her.  She didn’t shed one single tear or even act like she wanted to cry.  She didn’t even hesitate.  I gave her a kiss on the head and told her I would be back soon.  She said “ok” and walked in.  After the first morning in the kid room I picked her up for lunch.  We were heading to the lunch room and I asked her how she liked the kid room.  Without hesitation she said, “It was awesome!”

Ella walked a little taller that week.  She knew that no one was staring at her boo boos.  I would offer to push her somewhere in the stroller and she would say, “No, I can walk.”  She knew that it didn’t matter if she walked slow because the other kids with EB were walking slow too.  There was no pressure to keep up.

Joe and I had prayed that during our time in Nashville, Ella would meet another little girl close to her age that she could befriend and stay in contact with.  Unfortunately that didn’t happen.  She played with other kids in the kid room, but didn’t really connect with anyone.  While we were disappointed, we decided that since it was her first time it was probably good that she just got to observe and see that she’s not alone.  Hopefully during the next conference (2016) she will go in and really be able to make some life-long friendships.

It was equally wonderful for Joe and I to get to hang out with other EB parents.  On Wednesday and Friday nights Joe went out with several of the dads to play poker and talk until the wee hours of the morning.  On Thursday and Saturday nights I went out with several of the moms and talked the night away.  Joe joked that we need to buy a big plot of land and create an EB compound.  That way we can all live together all the time!

All in all, it was a fabulous trip.  While we didn’t get to see anything outside of the Gaylord, I know Nashville is a beautiful city and we can’t wait to go back and do some of the touristy stuff.  The conference was full of great information on practical issues (blended diets, wound care, etc) and on up and coming research that is being done.  We continue to pray for a cure and are confident that there will be something available in Ella’s lifetime.  We love and miss all of the incredible people we met there and can’t wait to see everyone again in 2 years…hopefully sooner.