Monday, December 20, 2010

December 20, 2010: Hello El Nino!


Has somebody begun work on a new ark?  It hasn't stopped raining out here since, well, I don't actually remember!  LOL.  I mean COMING DOWN raining, too.

We had a wonderful dinner with our friends Susan and Steve tonight in their new home down in San Juan Capistrano.  It is walking distance to the mission there and right as we pulled up, we heard the mission bells ringing and the train in the distance.  Really cool!  Only 20 minutes from us (on a clear night at least), but feels worlds away!

I got blindsided by the grief wave today and had to call in to work.  I really can't explain it.  Had a great morning, but by lunch time I got crushed out of nowhere and ended up on the coach hiding from the world under a little pillow.  What was really interesting was that at 3:30, a gentleman that I met at my buddy Joe Polish's 25K Group meeting called me after promising at the event that he would do so.  I wouldn't have been able to take his call if I was at work.  Glad I took care of myself; it made another door of possibility open quite unexpectedly.  After brainstorming for a few minutes, he advised me that $1 million really wasn't enough to be asking for, since at that price point, raising $3 million doesn't really take any more effort than raising 1 million, so we upped the ante to  - yup - you guessed it - $3 million by Bella's Birthday Bash on May 21, 2011.  I'm hoping the extra 2 mil could perhaps be enough to create an endowed research assistant position that is solely working on EB at the U!  That would be cool, and I am learning more and more that way more than this is raised year in and year out for these very things, and it's usually started just like this - with a vision from one person that spreads to many.

The easiest way to help in this campaign right now is to share the youtube video with your email and facebook networks.  Please share this link.  It's the video of me at Joe's event.  Just cut and paste it into your email or fb post:

That will help us out so much.  Thank you for doing so.  If you have already posted this on facebook, do it again if it's been more than 24 hours.  Chances are that the majority of your friends missed it last time, since each of our walls only show the most recent posts, or posts from a certain percentage of our friends.  Case in point, the guy who called me today, Phillip Tirone, called because he saw my post from yesterday on fb with the youtube link.  Now that was probably the 4th time or more that I've posted it, but each time I do, different people comment on it as if it were the first time I posted it!

Now, enough about us.  Please now take a minute to go visit our dear friends Courtney and Tripp Roth in LA.  Tripp is our little buddy who has Junctional EB, and Courtney is his absolute angel of a mom.  The love, prayers, and support she receives through the blogosphere absolutely is keeping her going when most of us would wear out.  Please take a minute and go refuel her tanks as well; Tripp is really having a prgressively tougher and tougher time recently.  Comment, too, while you're there!  Let her know you are out there praying for her and living PASSIONATELY because you CAN!  Please, share these two things with any of us - Patrice Williams, Courtney, Jennifer Edling, Becky Pop, Brett Kopelan, and all the moms on Caringbridge.  We are stronger with you in our lives, and it really matters to us when we hear from you.  Again, it doesn't matter what you say, it's THAT you say it at all!  With all the places on the internet you could be, you choose to come be with US.  THAT is a gift in itself.    Please de-lurk.  It's a bigger gift than you realize!

Alright, probably should go to bed.  It's late and I gotta LOT to do tomorrow.  Happy day to all.

God night.


  1. the day before yesterday i think it was, i shared courtney's post on facebook, it was so sad and so beautiful at the same time. if only people would know how horrible a disease EB is for ALL involved!
    i am not commenting as much as before, on other blogs neither, but i will make an effort and find something to say and DO it.
    You all really deserve it.

    love and hugs

  2. Praying for you as the holidays approach. I can only imagine how rough this Christmas may be for your family. Have a good day!


  3. Sending positive thoughts and tons of support for you, Ange and Ali!

    Tina in NJ

  4. Seriously. The rain was cool for a bit....but I really need to go grocery shopping. Argh! The silver lining is I'm not at work with 23 give year olds, stuck in the classroom all day!
    Courteney is my new hero...I'm amazed by her strength and that little Tripp is in My prayers...

  5. Glad you guys had a wonderful time at Grandmas last night with your family. Yes, Molly is precious...and so big already! Happy Ali is getting lots of "creative" gifts to keep her amazing little mind occupied :) I sure do miss her! After the Holidays, we would love to get together and have dinner again or coffee and dessert...anything! :)
    And I absolutely LOVE the picture of Bella, ALi, and Wilson completely glued to the TV...too sweet.
    Praying for peace and strength as you guys head to Colorado to enjoy a white Christmas!
    Love you all,
    The Vanderbooms

  6. Glad you haven't floated away out there! I visit Courtney's blog regularly and am praying for relief and healing for sweet Tripp. That kid (and his mom) are A.MA.ZING!

    What sweet pics of Bella and Ali - I always look forward to seeing them. Thanks so much for sharing with us!

    I hope you, Ang and Ali have peaceful, happy days ahead. Continuing to pray for all of you!

    Love from TX,

  7. You continue to amaze me! Three million! Bella is so proud of you and Ang...I just know it. :)

    I continue to read about Tripp and all the other EB babies. I pulled back when Bella died...began to really support Elle and then she died. I was rocked to my core. I hurt like I have never hurt so I havent supported Tripp, Jonah or even Daylon like I had been. I need to again...they all need the support and love. Thank you for reminding me of that.

    Hey look at the rain this could be snow and that would be a ton of snow. :)

    Sending my love to all and sweet kisses to Ali.

    Denise WI

  8. I have sent my Christmas donation of $1000 off to help raise awareness and fund research for EB. My dad was also featured on the radio tonight to discuss where the donation was going. Bella, Jonah, and Tripp were all mentioned on the air during the 5 o'clock news hour. Thank you for sharing your journey with so many!

  9. Following all the blogs, and praying. My heart goes out to them. I hope the rain stops soon for you guys, been following the weather channel. Love and prayerCarla Spradlin