October 25: EB Awareness Week, post 2...

Heaveno!

Lord, with so many phenomenal people sharing so many phenomenal ideas, memories, and stories this week, what would you have me share tonight?  I feel like I am preaching to the converted about EB Awareness Week.

Perhaps you could ask them to share about EB with their friends and family.

That's a good idea, God.  

I am full of them.  You just need to ask more often.  ;-)

...

And so we begin.

My friends, in honor of EB Awareness Week, would you be willing to share my photo above on your facebook page with the following caption?  (or feel free to write your own)

"Meet Tim Ringgold.  I read his blog.  He lost his daughter Bella to perhaps the worst disease you've never heard of: Epidermolysis Bullosa, or EB.  In honor of International EB Awareness Week, I'm doing my part to help be a part of the cure.  Please go to www.puckfund.org to learn more about how you can, too.  Thank you."

To download the photo, if you're on a PC, just right click on it (I think that's what you do), if you're on a mac, hit CTRL+CLICK and you can download it wherever you want on your computer, then upload it on your wall and tag me.  (P.S. If you live outside the U.S. the texting won't work, so just ask people to go to the site and they can donate $10 on the website if they are so moved.)

Thank you.  It takes an army to get enough support behind a rare disease to convert it from incurable to curable.

If you haven't been over to see the new and improved website, CHECK IT OUT!  Ryan has done such a fabulous job on it.  If you haven't read the success stories, you gotta read 'em.  They are what keep Ang and me going on this tireless crusade.  Also, please sign up on our mailing list!  We have more planned for the site, it's a work in progress, but we are really proud of where it's at to date.

Meanwhile, gotta tell you a cute story from life on the home front!

Yesterday was Julian's 8-week check up.  He is pretty much exactly 50th percentile in height weight and head.  When Ali went to her 8-week check up, our doctor gave us "the magic piece of paper."  This was a best practices hand-out on how to get your child to sleep through the night.  Well, no joke, THAT NIGHT, she slept through the night AND NEVER LOOKED BACK.  We call it the magic piece of paper of course because all Dr. Bindra had to do was hand it to us and it worked!  

(Sidebar:  Little did we know at the time that Dr. Bindra does magic tricks for his patients when they get old enough to appreciate them!  Seriously.  Total coincidence.)

It didn't work with Bella, but we blamed EB on that one in order to keep the mojo of the magic paper intact.  So, last night, we waved the magic paper over him, sang some incantations... just kidding... and MOVED HIM INTO ALI'S ROOM!  woohoo!  Ali is so happy about this because she was feeling really left out with the three of us in one room and her alone in hers.  She also sleeps like the dead, so he doesn't wake her.

Well, he did wake up last night for his late night bottle, but on each occasion that we put him down drowsy in his crib, he feel asleep on his own!  YIPPEE!  Progress!  We have been laying him in his crib a lot leading up to this, and playing his mobile for him (which HE LOVES), so his crib is not new to him.  His mobile is the same model (with dinosaurs instead of princesses) as the mobile we had over Bella's wound care station, and Julian is as mesmerized as Bella was by it.  It tugs on my heart every single time I wind it up, but it makes him so happy, so of course it's just one of the million things you deal with.

I think of it like a boxer.   A boxer can take up to 1,000 punches in a fight.  I'm a boxer fighting through my grief, taking life head on despite it.  So, every day, life throws its punches at me, and some I dodge, while others I see coming and know I just have to take.  Sometimes, life knocks me down to the mat, but I reach up, and my friends, family, and faith help me back to my feet, and I keep at it, and I never let the ref count to TEN!  before I am back standing.

Life can swing hard, and I'm not as graceful as some at going rounds with it.  Do you know who I admire?  Patrice Williams, Courtney Roth, and Jennifer Edling.  They continue to handle EB every day with such grace, gratitude, and faith.  I have a t-shirt with all four of our kids on the back, and I am so proud to be among them in this EB journey.  I don't know where I'd be without them.  They have inspired me to be a better parent, and a better blogger, and by doing so, we here have all been able to participate in this journey in this way we have.

It has been good, and I thank them each for being a positive influence on so many, myself included.  Thank you, ladies!  Keep up the amazing work.

Thank you to all of you that have already shared, many on multiple occasions, about us in the EB community.  We can't do this without you, so thank you again.

See you Thursday.

God night.