Sunday, October 23, 2011

October 23, 2011: Happy EB Awareness Week!


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?  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.

God night.


  1. Oh goodness... That picture of Julian melted my heart...reminds me of one of Bella...The one I used for her sign, collage of pictures, bottom left. Just darling!

    I'm going to add your link to my blog today, and have already plastered Facebook ;)

    As for "sporting the socks, carrying the poster, and remembering your little girl" pleasure.

    Hoping that magic piece of paper works!

  2. Tough week over here...lost an Aunt and a friend. Yes, the hugs are helpful.

    Don't sweat the small comments Tim. Of course you use emotional blackmail to get what you want. Do it all you want to!! We all want EB cured. We all want this to be over. Emotional blackmail isn't a bad phrase. It's a Dad who although he lost his daughter will do anything to raise money to cure other children.

    Sounds like a hero to me.

    Love the first photo - it works!! Big hugs and lots of prayers. It's a journey.

  3. Its amazing how much they look alike! Those pics of J- esp the 3rd one down... AAHHHHH so cute I can't wait to meet him in a couple weeks!

    The site looks wonderful, great work guys! Will definitely share!!!!!


  4. Hey - Did you see Patrice's post? Really puts it in our face what the reality is....between you, Patrice and Courtney, I have become very educated as to what EB is, what it does and most importantly why it needs to be cured.

    Good job Parents!

  5. Tim,

    You gave and continue to give all your internet readers, near and far, the chance to walk with you. That is a gift to all of us. We are honoured to walk with you, and that is something you must never forget.

    The PUCK site is excellent - moving while being optimistic, honest and upbeat all at the same time. Bella is proud, no doubt.

    And one more thing - that little guy of yours? He looks awfully wise for such a tiny. Just adorable!

    Fondly, always,


  6. Tim-
    Interesting about what you said about needing a hug last year and also needing to say thank you. After Sarah died I had this overwhelming feeling of gratitude for all those who helped us. In fact I sent thank you letters to all the nurses, doctors and fellows who had been with us those short 10 days in the hosptial. There must be a need in grieving to do that...or we are just rare ducks...