Well, here we are!
This time last year, we were holed up in a hotel in Louisville, KY, and EB Awareness Week was gonna have to be managed by someone else. ;-) I might not have even thought about it last year, as I was so focused on trying to set up EB Gatherings and Memorials while driving around the country with a 4.5 year old. I was really hoping for lots of people to come to each gathering, and there was some resistance, even a little backlash (one person accused me of emotional blackmail) for challenging people to come out from the internet vail and mourn with us. As I look back now, I realize that part of it was... and this is gonna sound funny... I just needed a hug... I mean a lotta hugs. There was one thing that this glorious medium cannot replace, and that is the safety I feel when just for a split second, I hug someone, and I can let me guard down - even for a second. I had been being so strong for so long, I just wanted to collapse a little at a time into some hugs. It's funny. I could not have articulated that, I don't think, last year (who knows, maybe I did and I don't remember). When I was reading the comments and my post from this day in 2010, I realized that I just wanted to meet, hug, and say thank you personally to the people that literally held us up through so much for so long, and I will never forget those EB gatherings. THAT is LIVING. Coming together in such a meaningful way to share a meal, a word, a prayer, a hug, and a song. Sounds almost like church.
Anyhow, soo much to catch you up on. In anticipation of EB Awareness Week this year, we have been hard at work overhauling the PUCK website. The basic design is the same, but we reworked just about every single page within the site to reflect PUCK's new focus on one disease at a time. Many thanks to the entire team at CCRF, but in particular, the He-Man Ninja himself, Mr. Ryan Durry: IT Master. Ryan has been working with me probably for the better part of 3 months to revamp the site, and while we have even more to tinker with, we are really, really happy with the renovation. Thank you, Ryan!
So.... go on over, and while you're there, please sign up for our mailing list so I can send you all sorts of inspirational emails on the amazing work happening at the U of M! CLICK HERE for the new site! Seriously though. We are really proud of the site. You can learn a lot about the cutting edge the team in Minnesota are doing research on, and find 6 different ways to help in the journey to cure EB!
In other news, I want to thank Sara Cooper and the entire Team Bella who walked in Bella's honor for a second straight year at the CHOC Walk at Disneyland last Sunday morning. We would have been there this year except it was Ali's big day singing at church and leading worship with the other kids, and they had been rehearsing for it for weeks. If Children's worship is on the same Sunday next year, I'm really going to be in a pickle! Anyhow, I just want to say thanks, you guys, for sporting the fabulous socks, carrying the poster, and remembering our little girl.
Lastly, Julian just gets sweeter and sweeter, and each day, a little more joy fills my heart. I had turned off the "son" feelings after we learned Bella was a girl, because we weren't planning on any more kids. Now, that valve is slowly and steadily opening up the more J-Man's personality starts to emerge. I am smitten.
Grandma happily gives Julian his bottle...
while Lucy sits and looks on all dejected....
Tomorrow is his 8 week check up. At Ali's 8 week check up, her doctor gave us "the magic piece of paper." This was the timeline for when she might sleep through the night. Well, sure enough, she slept through the night THAT VERY NIGHT, so we now refer to that piece of paper as "the magic piece of paper" so much that tonight, Ali asked us if we were going to get the magic paper at the doctor's tomorrow! LOL we got her trained, but we really need the J-an trained!
For EB Awareness Week, would you be willing to share PUCK's website address on your email and social media platforms of choice? http://www.puckfund.org. Thank you for continuing to walk with us, virtual hugs and all, ;-). This blog still completely keeps us connected to Bella and keeps Bella connected to all of you. As a result, we're all out doing great things.