Monday, November 29, 2010

November 29: Cyber Monday? Okay!


This is the first year I recall learning of "Cyber Monday."  Heck, last year was the first year I heard of "Black Friday," so I guess it's all good.  I always knew that Friday after Thanksgiving was the busiest shopping day of the year, but I never knew it had a name.  I guess Monday got jealous.

Anyway, there are still a couple of hours left out here on the west coast to log in to and choose P.U.C.K. as your charity of choice.  When you search on their site, P.U.C.K. gets I think a penny per search, and when you purchase items through their site, P.U.C.K. gets a percentage of the sale!  So far, has donated $34.22 to P.U.C.K.!

Remember, enough snowflakes makes an avalanche!

In other news... Ali is super clingy right now, which is really cute, but sometimes it can get a little cumbersome.  She switches on a dime between being really independent to really needy, and likes to act like a baby as well.  I suppose it's all part of her own grief journey.  Poor mommy.  Right now, Ali calls out to mommy for every and any little thing she can think of almost every half hour from bed... almost all night long.  If I go in, she gets mad and say she wants mommy.  Long nights right now.

Speaking of grief journey, I was recently introduced to a PHENOMENAL new source of literature on the topic of grief.  There is a gentleman by the name of Alan Wolfelt, PhD in Fort Collins, CO at who has been writing and leading workshops, seminars, and retreats on grief for years now apparently.  He has I think 37 titles on grief published!  He runs a grief retreat center next to his home in Ft. Collins, and writes on every angle of the grief journey under the sun.  One of the counselors I lead the Grief and Loss Retreat in AZ with attended one of his seminars and was really impressed with him.  So, I went online and found his catalogue of titles and asked for one of his books for Christmas from my mom.  Well, being as cool as she is, she ordered it immediately for me so I wouldn't have to wait to benefit from it!  The book is called Healing a Parent's Grieving Heart: 100 Practical ideas after your child dies.  (I'm hyperlink happy tonight!).  Anyhow, it is organized into 100 simple lessons, one a day, kind of.  They are simple, but powerful, and based on the testimony of hundreds, perhaps thousands of parents Alan has worked with over many years.  There is a new concept shared each day, with just a few bullet points to highlight the thought, and then he finishes with a call to action / action item you can take based on the point of the day.


1.  Know that you will survive.

Love that.

Action item?

Talk about your feelings.  Just sharing them with another person helps them dissipate.

Here's the best advice I can give about being that other person who is called upon to listen.  You don't need to say anything.  You don't have to fix, solve, or console.  People need to know you are WITH THEM.  If you can just BE with someone's pain without having to take it on or do anything with it, you give them the freedom to be with their pain as well.  When they realize that you are really listening, it takes the lid off their self expression, and they experience the SAFETY and FREEDOM to really share what is inside of them.

Ever start talking to someone and you just know they are not listening to what you are saying?

Ever talk to someone and they cut you off with their neat-and-tidy solution to your problem before you even finish?

You don't feel much like going on, do you?

Ever talk to someone and you can tell they are with you, following every word, and giving you all the space you need to say what is bottled up?

It is like a vacuum.  It allows things to surface for the speaker that otherwise might not in either of the earlier scenarios.

The gift of space.  You create it in how generous you are with your listening.  You create it when you shut not only your mouth, but the little running dialogue in your head you have about what they are saying.  I'll stop writing for a second so you can hear that voice.

Yeah, that voice.  The one that just said, "oh yeah, I know that voice." or "what voice?" or "what is he talking about?"

That's the one to really pay attention to.  If you can put a lid on that little guy, you are ahead of 99% of the world in your listening ability.  Try it.  It's a great practice.  I first learned that concept in one of the most powerful seminars I've ever taken, The Landmark Forum, back in 1998, and I've been practicing keeping it quiet in my listening ever since.  It's tricky!  Try it!

Angelique and I have both participated in many programs Landmark Education offers, and we can say without reservation that we would not be married today if it wasn't for what we learned about ourselves in their seminars.  The distinctions they teach about how we operate as human beings are so powerful and easy to recognize that once you see them, you can't miss 'em again.  They give you such insight as to why the areas of life that are important to you aren't working as well as you'd like them to.  I now have multiple tools I can use to help me get unstuck whenever I am experiencing a loss of personal power, freedom, or full self-expression.

Gooooooood stuff.

The two BIGGEST sources of our strength through this journey?

1.  Our faith
2.  Our training at Landmark.

Check them out.  Go attend a free introduction or go to a guest event at one of their centers.  I used to lead the free introductions to help people see how this seminar would support them in the games they were up to in life... or more often, how it would support them in beginning to truly play big games with the life they already have, but haven't been powerfully using.

There is a world full of spectators in the game of life, and there is a much smaller portion of players in the game of life.  Most react to life, some create the life they want to see.

Are you playing the game of life?  Or is the game of life playing you?  Wanna get off the bleachers and finally get on the court?  There is no circumstance (other than you) stopping you.

Yup.  I said it.

You are a circumstance.  (Me, too!)

Ouch.  I know.  Trust me.  I know.

Most of us (it's part of being human) sentence ourselves to a point of view or place in life without actually pushing to see if there is a lid to our experience or potential at all.

Some of us push a little, and at some point give up when it 'gets too hard.'

Some don't stop pushing until they achieve their vision or goals.

Some (very few) realize they don't need to push at all.  There is no lid.

Yup.  No lid.  Just us.  We (our 'minds/thoughts) are our own lids.

All manifestation and creation begins with one pure energy.  The highest, fastest vibration known to man:  THOUGHT.  If we can liberate our visions for what is possible from the prison of our own fears, judgements, concerns, we are free to really create.  After all, what do we really know about what is or isn't possible?  Where do we look to see if something is or isn't possible, anyway?  The past.  Has it been tried before?  Have I tried it before?  Bob tried it once and remember what happened to him?

Looking to the past to see if something is possible is like driving down the road looking through the rear view mirror.

There are two reasons I issued last night's challenge to you.

1.  To help find a cure for EB and 400 other skin diseases.
2.  To challenge you to confront what you think is or isn't possible.

Judging by the comments, and by the fact that only 1 single person emailed me with her name and the amount of her choice, I'd say there are probably a few of you that were confronted by that challenge a little... particularly in the realm of 'whether it's possible (for you) or not.'

What I imagine happened was you made a decision in the moment before ever actually trying. Others probably got hung up on 'how do I pledge my word on producing a result when I don't know how to do it?'

Heard the phrase, "ready, aim, fire?"

It's actually, "Ready, FIRE, aim."

Great example of this... I have struggled since I got back to CA with beginning a workout routine.  I kept saying I needed to research whether Snap Fitness was cheaper than LA Fitness, but the one day I actually went to find out, the owner wasn't there.  So, I told myself that he wasn't making it easy enough for people to join his gym, and so in making him wrong, I got to be right about not yet working out.  Meanwhile, Ang (the smarter, stronger, and wiser of the two of us as you by now also recognize) kept on me.  "Why don't you start exercising while you figure out which gym is better for you?"

Ready, fire, aim.

So, after about 3 weeks of whining as to why I wasn't working out yet, I finally got on my bike and went for a ride.  That broke the inertia.

Inertia is a powerful law in the universe and not one to be overlooked.  If you haven't done something before, or in a while, it takes a significant amount of initial energy to 'get the ball rolling.'  However, once the ball is rolling, the inertia of movement leads to momentum of movement.  Today, I rested, because I was WIPED OUT from the two peaks in two days and 4 hours of sleep I got last night after a long drive home.  You better believe that I can't WAIT to get back on my bike tomorrow!

Can you notice the difference between:

Getting confronted, before taking action, that you won't be able to accomplish something,
trying your butt off to accomplish something, and missing the mark?

I think we are as a society so afraid to 'fail' that we don't ever try half the things we would if we didn't care if we 'failed' or not.

If a student studies for a test of a hundred points, but only gets 85 of them, does he or she fail?

Why as adults do we turn into these terminal perfectionists that say things like, "do it right or don't do it at all..." or some version of that?

Let me put it in more relevant terms... do you think I or anyone else would be mad, sad, or let down if you pledged to raise $1000 for PUCK over the next 6 months, and on May 27, 2011, you only managed to Raise $500?  Isn't that $500 more snowflakes than if you never even bothered to try?

I think there is a quote that goes something like, "You only fail if you fail to try."  If not... I just made up a new one! LOL.  Look for it in next year's successories catalogue!

Good thing adults don't have to learn to walk.  Can you imagine how THAT would go?  We'd all be dragging ourselves around saying things like, "gravity is just too hard," or even better, "I tried and it didn't work for me." or "I was gonna but then I saw Judy fall and hurt herself and I said forget that!  I don't wanna get hurt!" or "it's a sign.  It wasn't meant to be."

Somehow, we play it safer and safer and safer, till we stop playing at all.  It's safer that way!  I think we don't want to get hurt again, either by someone or ourselves, for missing the mark, whatever that may be.  I know for myself, "I won't do THAT again" has been useful for not burning my hand on the stove, but wasn't so useful when it came to asking girls out after I got dumped as a 15 year old.  There are three male friends of mine right now in their early 40's who are total catches, but are paralyzed over giving their heart to another woman after it got ripped out once.  They have imprinted in their mind that it is safer not to open the lock, and in doing so, beautiful, wonderful women pass right through their fingers and they can't - they won't - take that chance again.

It's not whether or not any of us have any fears in life.  It's whether we let those fears actually call the shots.  Some fears are legit... i.e. don't walk down a dark alley alone at night, but most fear in our pretty affluent, comfortable, access-to-clean-water, food, and healthcare society is a little... unnecessary.

How do you feel when you face your fears, and watch them disappear?

How do you feel when you let your fears dictate what you can or can't do?

You can be burned in wither case, for sure, but life without risk is life without reward.

Okay, enough of all that, I can sure drive a point way too far can't I?  :-P

Here are 7 ideas for you to get the ball rolling:

1)  Google fundraising.  Holy COW there are a million ideas out there.  Find one that sounds fun and GO FOR IT!
2)  Do you send out Christmas Cards?  In your card, make a simple request.  Ask people to go to and make a donation of ANY AMOUNT to a cause you are focusing on this year.  I know a woman who raises over $3000 a year EVERY year for the 3 day cancer walk she does just by asking for pledges in her Christmas letter.  Her words?  "It's easy."
3) Write a list of 20 people you know and respect.  Write them a short letter explaining Bella's story briefly and your commitment to being a part of the cure.  Simply ask them for a $50 donation.  One a week.  That's it.
4)  Ask your email list/facebook friends to donate $1 to $5.  Just post a link to the blog every day till Christmas so depending on when your friends are on fb, they'll see your post on their home page.
4.5)  Email your ten closest friends on FB and ask them to help you raise the $$ you want by sending out links to PUCK or the video below on their fb pages
5)  Ask that in lieu of presents you don't need this Christmas, have your friends, family, co-workers make a small donation to PUCK instead.
6)  Have a garage sale.  Make money for PUCK and space for your life
7)  Enlist the help of your family to raise $ through their social networks.

Here's the thing: TRY.

As Angelique said today to me, "Ask them to focus on what they CAN do instead of what they CAN'T do."

Lastly, one commenter asked a great question about other research.  GREAT question!  Yes, DebRA has been funding other research for years, and EBMRF has funded MILLIONS to Stanford U. and more recently USC.  U of MINN started this study with ZERO funding from either organization.  More recently, both organizations have begun to help fund this study, but Drs Wagner and Tolar have been operating on a shoestring budget the entire time.

Dr. McGrath from England acknowledged that the work Wagner and Tolar are doing is the closest whiff of a cure ANYBODY has come upon in the past 20 years world wide in the world of EB.  Even now,  Dr. Wagner is consulting with Dr. McGrath to assist in this same study to begin in London.  So, I couldn't agree more about not putting all your eggs in one basket, but the good news is that the other baskets have been getting WAY more $$$ for decades and have no cure to show for it, despite persistent teases that "we're only a year away..."  year after year.

The key to this is that the procedure works.  Kids are already growing their sibling's skin on their body.  It's the process of the procedure that desperately needs refinement.

LAAAAST but not least, check out the new video of the speech I gave in LA a couple of weeks back.  PLEASE FORWARD THIS VIDEO OUT to all your social networks.  It was an absolute gift, so let's use it to its fullest potential!  It is also posted under videos so you can go to the page on youtube and share the link from there as well.

I hope I am not wearing you all out.  I know I push hard on you.  I push on you to think and act in new ways that I hope add power, freedom, and maybe some new insight.  I cannot keep my passion down.  I hope my words in some way motivate, inspire, cause you to think about things in an empowering way.

God night to you all.  I love you.


  1. Hi, i have been thinking about your post and challenge, i already do lots of fundraising for two charities and my sons local swimming club, but one thing i will challenge myself to do is to put into a jar $1 everytime i go to my gym, as Bella is the reason i am back at the gym, i still blow a kiss up to the sky to thank Bella for showing me the way every time i walk out of the gym door, i can help out in that way, i go lots and it will add up over the 6 months. I will then donate it to where ever you want me too.
    thanks Bee

  2. P.S. I'm in Australia so thats Aussie dollars ;0)

  3. RIGHT.ON!!!! I am SO IN! I haven't emailed you my amount just yet...still gathering information so I can send you a solid amount :)
    ps..Christian is back @ Joanie's house on Tuesdays :)
    Great entry tonight. Great speech!
    Always thinking about you Bella Doll- XO, nicole

  4. ok, let's put all the eggs into UofM basket then ;-)

    I will email soon with a realistic amount, have to think how to do it first.

    but one thing I know: I will do as Bee said, and STARTING TODAY, I will put all my change in a jar, daily, and send it to PUCK in May 2011.
    It will be EUROs, since i'm in Spain.


    wouldn't this be cool?

    thanks tim for helping us all be a better person.

    thanks bella, jonah, tripp, daylon, elle, leah, sam, ej, rafi, hanna, elly, keric, payton, mckenzie...and all other unknown EBkids and Parents for showing us strength and what life is worth.

  5. You've listed some pretty good ideas as far as fundraising goes. I've done the March of Dimes walk since I became a NICU nurse (6 years running), and have been able to raise over $1100 each of the past 5 years. Emailing, facebook, they really work wonders. You have to constantly remind people about donating. People lead busy lives, and it's easy to say "I'll donate later", only to later forget.

    Some other ideas off the top of my head... Email / Twitter people like Oprah and Ellen... If enough people "@TheEllenShow", she just might pick up on it!

    Last week while at work, the baby I'm taking care of was having a bit of a moment, and needed to calm down quite a bit. As I was comforting him, I realized that I was humming a melody to him. As he starting calming down and stopped fighting the ventilator, I realized that I was humming Bella's Song. It really does work wonders.

    Chicago, IL

  6. You are on fire! Thanks for all the inspiration...God truely speaks through you and Ang!

    Prayers for Ali to rest peacefully at night.

    Donna in NJ

  7. I added to my homepage and in about a week added 20 cents to the overall contribution just through searches. Pretty pathetic, I know. BUT if 1500 people did this that would add up to over $15000.00 in one year. Just for internet searches. That seems impressive for virtually no effort on our part. Great idea.


  8. I'm glad the question was raised about $ in one pot. I was particularly pleased because a parent of an EB child and I were talking about how there has to be another way besides BMT. The parent went on to tell me about the Collagen VII research being done.

    I understand that with stem cell transplant survivors grow siblings skin. I hear that. I'm still having a hard time wrapping my head around BMT as a means to get there. I need to do more intensive research in the EB world and prospective trials, treatments and outcomes so I can feel good about my decision on where to put raised funds. I look forward to raising $ for EB research. Thank you for your efforts.

  9. Good morning, Ringgolds! I have to say I'm in the camp of being afraid to get out there and try. Not because I don't think it's a good cause, but because I'm afraid to fail. Kind of dumb, isn't it?!

    I believe that God has put me in your path, and in Jonah's and Tripp's and Sam's paths, for a reason. And maybe that reason is because I'm (and our Team A is) supposed to be helping however we can to raise money for research. Either way, I don't ever want to be at the place where I could have been helpful (in whatever small way) and chose not to do that.

    Whew! I know you didn't ask for all that - just got on a roll. :)

    So count Team A in! Jeff and I will pray about the specific amount and let you know that ASAP but we will definitely help however we can and get the word out about EB.

    Love to all of you!
    Laura (and the Team)

  10. For months now I have been telling my husband day after day what the blog says and how it makes me feel! I wanted to post yesterday, but like you said I was afraid! What should I say, What would my goal be, What if I didn't reach it, What if I said something and did not come through, on and on ...What if, What if.

    I am already IN and will be emailing. (Using iGive has been so easy). Today's post gave me alot to think about and plan for!


  11. okay this is just a thought... I know this doesn't support PUCK, but it supports EBMRF. I know NOTHING about that organization, but when I got my tinyprints magazine in the mail this week - I was shocked (& pleased) to see proceeds from these cards support EB!

    I was bummed that I already ordered holiday cards to send out, I might have to order some of these as gift tags!


  12. Hi Ringgold family!

    I'm trying to figure out a way that I can help raise money, so don't count me out just yet. You have inspired me to do something, but I'm not sure what I can do... thanks for the reminder!

    I'm praying for all of your grief, but I am going to start praying specifically for Ali and her sleeping patterns.

    As always, thanks for sharing!

    Megan from WV

  13. I know I haven't emailed you yet, but I have it on my mind. Unfortunately a lot of other things on my mind the past couple days have taken precedence, is all. ;) But I can't forget about it, since I still read the blog every day!

    Like some other readers, I also fund-raise for a couple of other charities/non-profits. I don't mind asking friends and family to help out and donate... the first and second and even third time, but after that I do feel it gets a little awkward. So I am going to focus on what I can do myself - a yard sale, saving spare change, or even donating some of the proceeds of my jewelry sales - without asking others for donations right at this moment. ;)

    I really like what you wrote about listening skills, thank you for sharing.


  14. P.S. I like the idea of donating a percentage of my monthly jewelry sales to PUCK - but I'm not sure how to go about it. Googling isn't clarifying much so far. Can any readers here link me to more info on how to do this? (I.e. do you donate a percentage of net sales, or gross? How do you give your customers proof that the donation is going where you say it is? etc). I know if I donate from my Etsy sales, that Etsy requires me to have permission from the charity or non-profit to use their name in my shop.


  15. It was nice to watch your video and "meet" you.

  16. Tim,
    Regarding donating to PUCK -- I would like to see EXACTLY how the donations are used.

    I have tremendous respect for Drs. Wagner and Tolar--they are warriors of the medical profession and should be blessed for their brilliance, bravery, and dedication.

    And I could not agree with you more about the EB funding that's gone strictly to California. It's been a sore spot for me, but--to each his own.

    Nonetheless, I'd like to know exactly how the money is spent for PUCK, but haven't been able to find the info online. Do you know?
    If someone donates $500 to PUCK, how is that $500 used?
    An honest question, and no offense intended.

  17. Great picture of you and Ali today. I love the "monkey" moves she is doing! Sorry to hear that she is being so needy right now. I'm sure that can be hard on you no matter how understanding you are of her grieving. Sometimes it just wears you out.

    I've been doing searches on and that's cool to see what amount is being contributed just for me to browse the internet! Also, I like what one commenter said about using and how they contribute to EB. I am going to use them to order my Christmas cards this year. So many great ideas out there. I know we can do this.

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

  18. Hi Tim!

    You never fail to inspire me...even when I am afraid of being inspired! It has been 6 weeks of loss in our home...first Bella, then two weeks ago, two students from my daughters' high school, and last night, a beloved teacher. I have always been a positive thinker, but I feel myself withdrawing, even as I encourage my children to have hope in the face of loss.

    I know that what I need is to become actively involved, and so I am taking the leap...I'm in. Thank you for your voice...I think you will change the course of many lives with your vision...mine included. Blessings!

  19. Hi Ringgolds,I, like other readers would like to know just where my donation is going and who supervises it better to donate to BMT or to EB research.I have also wondered how families of lower income can manage treatment for their little ones.would fund raising for these families be of more assistance.Dont misunderstand me--I will be contributing I want to be more informed as how the money is used.My prayers cont for you,and all EBbabies