Thursday, December 2, 2010

December 2: Happy and Humble


Well, good news!  In just 5 days we have reached $10,000.00 in pledges for P.U.C.K!  I am fiercely humbled b this because leading this charge was TOTALLY out of my comfort zone.  I have never asked a group of people for this much money so directly in my life.  I may not have done it perfectly, as evidenced by quite a  few comments that disliked this week's subject and style, but I did it.

Ready, Fire, Aim.

Again, I want to thank everyone who saw this as an opportunity worth taking at this time.  Thank you to the rest for considering, and for enduring this pledge drive.  I will be working separately with the 13 or so people that volunteered outside of this blog in a smaller, more focused community setting where we work together each week and month to support each other in reaching his or her own goals.

After tonight, I won't be discussing THIS drive on THIS blog again.  If you find at some point moved to join us, you are of course welcome at any time!  The more the merrier!  Accomplishing goals is more likely to occur when you have a community of people supporting you, so, we'll do this as the community we already are!  I will still be posting daily on this blog, don't worry, I just will move this topic off this page at least for the foreseeable future. ;-)

I learned a lot from this project!  I learned I crave people's approval more than I realized.  I thought I was able to withstand criticism and feedback better than I am.  I learned I am humble about some things (my faith) and not about others (what I think I know about others).  I was reminded I can't be all things to all people.  I learned that while there are a million other causes out there and times are tough, kids still get sick and die, and we just did something, albeit small, about that.  It reminds me of "The Starfish Story."  I'm sure you've read it or heard it a million times, but in case you haven't, here it is:

The Starfish Story

Once upon a time, there was a wise man who used to go to the ocean to do his writing. He had a habit of walking on the beach before he began his work.

One day, as he was walking along the shore, he looked down the beach and saw a human figure moving like a dancer. He smiled to himself at the thought of someone who would dance to the day, and so, he walked faster to catch up.

As he got closer, he noticed that the figure was that of a young man, and that what he was doing was not dancing at all. The young man was reaching down to the shore, picking up small objects, and throwing them into the ocean.

He came closer still and called out "Good morning! May I ask what it is that you are doing?"

The young man paused, looked up, and replied "Throwing starfish into the ocean."

"I must ask, then, why are you throwing starfish into the ocean?" asked the somewhat startled wise man.

To this, the young man replied, "The sun is up and the tide is going out. If I don't throw them in, they'll die."

Upon hearing this, the wise man commented, "But, young man, do you not realize that there are miles and miles of beach and there are starfish all along every mile? You can't possibly make a difference!"

At this, the young man bent down, picked up yet another starfish, and threw it into the ocean. As it met the water, he said, "I made a difference with that one!"


I remember when I got my first email back from an EB dad who received a copy of Bella's Blessings in his DebRA New Family Welcome Kit.  Although that book may not exactly be a New York Times Bestseller (yet), it made a difference with one dad I would otherwise never connect with.

How do you fight of feeling like the tiny pebble in the ocean?  

Remember this other goodie:  

To the world you may be only one person, but to one person you may be the world.

God night.


  1. I LOVE the pictures of EB babies taken right after bath. They look so "clean" and free and at ease without all their bandage burden!

    I think this has been the first time that i haven't felt my heart sink upon seeing Bella's picture at the end of the post. I guess i am starting to heal, too...

    love and hugs

    (and a sigh of relief for you after these difficult days some of us forced you into... ;-)

  2. Oh Bella Doll! This picture pulled my heart a little too much tonight....I miss that girl!
    Sounds like you hit a relief pocket- just from reading the comments posted after yesterdays entry, you can tell that the fire and admiration for Bella has not let down. Regardless of everyone's decision, at the end of the day, we ALL still love Bella, we ALL support you and we ALL are still here checking in every day & night! It's not easy to walk a fine line, and it surely isn't easy to please everyone. However, your ultimate goal is to include Bella in your everyday, to continue her legacy and to ultimately follow through with your commitment to Drs Wagner/Tolar, in finding a cure for EB.
    You know what I say to all that- RIGHT.ON!


  3. I didn't know the story of the starfish and I loved it. I was very worried for you these past days with all the comments. I'm glad that you came back stronger. well done for the $10,000.00!!!
    Thank you for keep posting.
    Praying for your family always.

  4. Hi Tim: Just checking in to see how you guys are holding up. I know you are still numb, that helps a little bit, doesn't it?
    Keep up the great work, we WILL find a cure for EB. Meg and I are concentrating on a fund raiser for DEBRA right now, what would we all do without DEBRA??? We would love to send DEBRA a huge check in February, which would have been Leah's 2nd Birthday. Still missing her!!
    Take care and Keep the Faith. Love and Hugs Leah's Nana

  5. Congratulations! Nothing wrong with asking. It's your blog.
    Your approach was passionate and although it conveyed to some of us "If you cared, you would donate whatever free time you have to raising money for this cause."
    It's a fine line and for some you crossed it. It hurt some feelings. I highly doubt anyone wanted to make you feel attacked, just aware.
    Although I am not "in", I will continue to donate to PUCK.
    It's simple really, you apologized.
    I WOULD like updates how your fundraising is going and if you have a different tab or if I have access I will follow it and pray for it. I believe you are going to do it. I know you are with your team of Bella Warriors! I'm excited for you and EB. I'm proud of you and Ang for dedicating to making sure NO other children die from EB or from the treatments trying to cure them.

  6. I came across this in US Magazine & thought you might be interested to pass the information along on your blog. Celebrity endorsements never hurt!!!

  7. Love the starfish story, I hadn´t heard it before but will make sure my boys hear it. I too have been quiet during all the fundraising, I was feeling a little guilty but like another commenter said you have the right to write what you want on your blog. Everyone needs to be passionate about something and you have your something...I realized that I should pick up on your passion and do the samething. I was feeling guilty because I donate to research but it isn´t EB. I have MS and so the majority of my donations go to finding it´s cure or at least a better medication...I realized that I you were talking to me but you also understand when it comes to these things that we look at our own lives and felt that you (and Bella) would understand if I opted out.

    I gain strength, faith and opptimism from you and your words and for that I am thankful.

    I continue to stop by daily and pray for healing for you all.


  8. My dad would tell us the starfish story when we were kids and we still love it! So glad to hear that you are raising that money for this great cause, for the health and safety of these innocent children, and for their hardworking families! God continues to bless you all and blesses us by crossing your paths! As a family, we are looking for little ways here and there to make donations to PUCK when we can!!! We are really always praying for you, Ang, Ali and your families!

  9. Keep on keepin' on! I feel you are right on to ask for fundraising pledges to PUCK. Finding a cure for EB is your passion and your words on fundraising are passion-filled. Any issue I may have with your asking (and I don't have an issue) would be my issue and not something that should be put upon you. I appreciate your heart and commitment...that's what I'm thinking when I read your blog. So...keep on keepin' on!

    I think of your family daily. I am in awe of your strength and your ability to stay in the moment through the ebb and flow. Much love and continued healing to your family. Your family remains in my prayers.


  10. I love that story. I have heard it before and I loved reading it today. I am so glad to be a part of "Bella's Warriors", as a previous commentor called us. :0) I look forward to working with everyone on raising money for EB.

    The picture of Bella is great today. She looks so refreshed and happy after her bath!!

    Lots of Love,
    Amber, Craig, Malorie(2 1/2), and Liam(11 mos.)
    The McLaughlin Family
    Moreno Valley, CA

  11. Hey Tim--love the starfish story. I work in a special ed department within a school district and the starfish is our mascot all because of this story. It has become an "emblem" of sorts for our department and I even have clothing with the starfish on it. I think of it often in my work as a music therapist. I am leading a run/walk group in our office and we call ourselves Team Starfish. Good stuff. Speaking of is that alien??

  12. I had heard the Starfish story way back when, but had forgotten it! Glad to told it, well worth hearing it again, because it is so true!

    Awesome on the fundraising!

    Love this picture of beautiful Bella.