Tuesday, March 29, 2011


March 29, 2011

Thanks to everyone for reaching out to us with such kind words after my last post.  You all have a right to be angry and sad and frustrated.  Right now, the person is only accused of crimes and not yet convicted, so we should probably remain patient.  That is why I offer the following, much lighter post today:

Quick.  Name the first three hymns that come to your mind.  Maybe your favorites.  Maybe ones you hear frequently.  Maybe ones you have heard your whole life.

Here are mine:

Amazing Grace
Holy, Holy, Holy

and because Easter is approaching

Christ, the Lord, Is Risen Today

Did yours make this list?

And what exactly is this list?

This is a list of hymns that have stood the test of time in the US in mainline protestant churches. 

Robert T. Coote looked at successive hymnal editions of the following six mainline Protestant denominations, starting in the late nineteenth century and stretching forward to present day hymnals:
  • Anglican (Episcopal), four editions, from 1892
  • American Baptist, four editions, from 1883
  • Congregational (United Church of Christ), five editions, from 1897
  • Evangelical Lutheran Church in America, five editions, from 1899
  • United Methodist, five editions, from 1878
  • Presbyterian Church (U.S.A.), five editions, from 1885
His study uncovered that 4905 different hymns had been published in these 28 hymnals.  Only the first 13 hymns on the list above appear in all the editions.  Nine more appeared in all but one edition, and five showed up in all but two of the hymnals spanning that time.

Did you find yours in the list?  Amazing Grace didn't make it, but my other two did.

Did looking over the list make you start singing or humming?  I didn't know all the hymns on the list, but it did give me pause and comfort to imagine my grandparents, great grandparents, and maybe even great-great grandparents standing in the pew singing the same songs I know.

If you want to read more, here is the original link to the story, Hymns That Keep on Going.

Thursday, March 24, 2011

Cooperate, Coordinate, Collaborate, and Learn

March 24, 2011

Odd Friday Lanyard Workshop is with the Phi Theta Kappa Honor Society at Blinn College tomorrow at noon!

The semester piled back on me as soon as I got back from DC.  It has me by a choke hold and will not let up for several more weeks, even if I say uncle.

Which makes my trip to DC last week even sweeter.

Believe it or not, we got all 46 attendees and three organizers of the PAC2 workshop into one (not so perfect) photo.  This group represents the diversity and huge hearts that make up the childhood cancer community who met to figure out ways that we could help each other out.  You will be hearing more about this from me (I guarantee).

Not everyone I have ever wanted to meet from the neuroblastoma cyber world was there, but folks, you have to believe me when I tell you how meaningful it was for me to be sitting along the NB Stretch of the Table with Meg Lawless Crossett (Rachel), Caryn Franca (Nick), me (Erin), Mickey Johnson (Cody), Gavin Lindberg (Evan), Jay Scott (Alex), and of course, Andy Mikulak (Max).  

The potential to do even greater things than we are all doing individually is at hand.  We discussed ways to tap into meta-messaging, especially during September's Childhood Cancer Awareness Month and attempted to identify other ways that we might weave our organizations together through sharing data on childhood cancer, creating a collective events calendar, and building templates to learn from each other.  

For all my Erin's Dream Lanyard volunteers, as a symbolic gesture or our willingness to find ways to support mutualism and collaboration, I donated a lanyard to each of the participants, and let me tell you, they were universally admired!  I can't give you enough compliments on how beautiful and meaningful everyone found them.

I wanted to tell you about this workshop and about my thrill at meeting so many people I have only known through the internet before I told you about another, darker thing.

About two months ago I got a call alerting me that Erin's photos and bio had been lifted from this website and that someone had created a new person called Erin Jaxyn Nalley, who was in fact my Erin and your Erin.  Two Fridays ago, a Louisville, Kentucky detective squad arrested a woman named Crystal Vanarsdale on eight counts of identity theft.

This is how she looked when she was perpetrating the crime.  

This photo comes from her fundraising website for Kosair's Children's Hospital, where she claimed to be a childhood cancer survivor:   

"I was diagnosed with Acute lymphoblastic leukemia just 6 days after my fourth birthday. Since then I have endured seven very long years of Chemotherapy, four different clinical trials, 126 days of radiation, two bone marrow transplants and a stem cell transplant, over 300 blood transfustions, have swallowed more than 30,000 pills, had 17 surgeries, and have spent 958 days in the hospital." 

Having survived such a horrific experience supposedly made her a true hero to many children who now were fighting their own cancer battle.  This young woman then stole the identities of at least eight children (including Erin) with a range of ages, diagnoses, and prognoses, set up facebook accounts for them and posed as each one, luring followers into their stories.  She killed off Erin on November 30 last fall and buried her in Tiffin, Ohio.

This is what she looked like in her mug shot.  Not nearly so carefree and happy.


Now you may understand why my posts have spread so far apart lately and why my words haven't reached their full wit and sparkle potential either.  It has been very difficult to make sense of this sad and sick situation.  On the one hand, I am appalled someone would claim the rigors of treatment our children experience just for fun or glory or status or as a game.  I hate that someone captured Erin's life and claimed it as their own.  I resent the plagiarism of my own descriptions and stories.

In some ways, we set ourselves up for such a situation.  Everything that was stolen is in the public domain: all the photos, all the stories, all the biographical detail.  

And frankly, I wouldn't have it any other way.  How else would I know the lovely, talented, beautiful friends I have made from around the world if I hadn't been willing to trust the internet with Erin's story?  I have become connected with so many people and learned so much from them (I'm talking directly to you right now!), that I am willing to make that trade.  I am also willing to accept that a young woman, sad in so many ways, needed Erin as an avatar.  She's who I would choose if I needed to create someone to inspire others.

And so, in the end, each of us with blogs and caringbridge sites has to face whether it is worth exposing ourselves and our children to the Crystal Vanarsdales of the world.   I, for one, am glad that the folks I met last week shared their children with me through the internet, even though I didn't know them.  I am completely richer for the experience.

P.S.  If you are Facebook friends with Crystal Vanarsdale or her alter ego Kylie Celeste Krause, I would be very careful!

Wednesday, March 16, 2011

See Ya Later!

Heading to Washington DC at 7:00 Thursday morning to lobby my Congressman for the Creating Hope Act and to meet with people like myself to figure out how we can cooperate, coordinate, collaborate, and learn from each other. Thanks PAC2!

Tuesday, March 15, 2011


March 16, 2011

I shipped sixty-five lanyards, a dozen eyeglasses chains, twenty keychains, and a pair of necklaces out on behalf of Erin's Dream Lanyards  to Buffalo, New York (for the Cure Me!  I'm Irish! fund raising event sponsored by Melina's White Light and Friends, to Cape Canaveral, Florida (soon to be living on a Carnival Cruise Line Ship), to Denton, Texas, and to Las Cruces, New Mexico (where a webfriend who became a real friend is offering up lanyards in her church's silent auction).  These do not count the 96 lanyards and sundries that I shipped to Boston for the Cure Me!  I'm Irish event weekend before last.

I understand from the recent silent auction held by the Brazos Valley Chorale, that this is a very good way to do well for your organization and help fund a cure for childhood cancer. . . And if you want to double that. . . buy some of our African line lanyards (click over and see for yourself!).  These are made with beads fashioned by HIV+ mothers and war refuges in Uganda as part of a Fair Trade project called Beads for Life and they are made from lacquered recycled paper.  Think about it:  for a small donation (or a large donation, if you prefer) you can support your own organization's auction, help fund a cure for pediatric cancer, give African women a chance to earn a fair wage, and encourage recycling!!!!   WIN/WIN/WIN/WIN.  That rivals Charlie Sheen on Red Bull!

Thursday, March 10, 2011


March 10, 2011

And so we begin the trudge through Lent.  

When we hit Mardi Gras, 2009 and rolled into Lent, Erin had just scored her first ever perfect attendance for a six weeks grading period and was honing her Wii skills, whomping everyone at bowling, tennis, and cow racing.  By Maundy Thursday, she had run out of miracles.  

Last year, I struggled during Lent, wondering why I had to give up so much (I'm thinking a daughter is all in compared with chocolate, Diet Dr. Pepper, or Facebook).   I tried to appreciate the springing of spring and the nuances of all the different shades of green that popped out all around me.  I limped through. 

This year to kick off Lent, Walter had to work through dinner and Ash Wednesday worship.  He missed seeing Nico, Toni, Matt, and Meagan singing the first anthem.  I was there, but missed out just as surely.  Where was Erin?  Not, as she should be, standing in the middle of the small choir turning a quartet into a fivesome.

I have to say that it was not that much of a comfort to hear "ashes to ashes, dust to dust" during the imposition of the ashes.

The closing hymn was "Walk that Lonesome Valley" which took me straight to the days when we sang along to that on our Kingston Trio CD, and I would often replay that one, just to avoid some of the other tunes (all sung with impeccable harmony; almost all featuring drinking, gambling, infidelity, or lawlessness).  I smiled to keep from crying, by reminding myself that the Kingston Trio, George Jones, and Joan Baez all rocked that hymn better than our congregation does.

In the end, I left uplifted, grasping the three key words of the homily:

Instead of 

offense  --  punishment 

we have


This is what we need and this is what we get.

Friday, March 4, 2011


March 4, 2011

Does this make you smile?

How about this?

Do I have to pull out the big guns?

The bigger guns?

I hope you are smiling now because I'm trying to save your life and improve its quality.  According to LeaAnne Harker and Dacher Keltner, of UC, Berkley, smiling is a winning strategy.  They measured yearbook smiles, then tracked down the folks they measured.  Larger smilers had longer-lasting marriages and higher contentment with their own well being.

Another study measured the facial expression on Major League baseball players' trading card photos.  On average, big smiling players lived to age 80.  In contrast, those who didn't smile died significantly sooner (age 72.9).  Players that showed a trace of a smile had in between longevity (75 years).

Brain studies also confirm the positive effect of smiling.  A smile stimulates the brain as much as 2,000 bars of chocolate and lowers stress hormones like cortisol and adrenaline.

So when someone says "Smile for the camera!"  Do It!