Sunday, November 25, 2012

November 25: Worn and Torn...


Happy Thanksgiving to you all out there wherever you are!  I know that Thanksgiving is an American Holiday, but aside from the traditional turkey feast, taking a day to give thanks for *Anything* you've been blessed with is a good thing, wouldn't you say?  I am filled with gratitude for so much.  Life is good.  Our family is (I think) two weeks away from FINALLY slowing down.  It's been an epically busy fall for us... far more so than usual, even for us.  Ang has been traveling for work during the weeks, and I've been traveling on weekends going all the way back to August.  It feels like it's been non-stop.  It's not sustainable, but it's produced some amazing results.  You know me well enough by now to know that I'm not a jogger in the game of life, I'm a sprinter, and yes I do need a break, and I've got one coming.

So, what have we been up to since I last wrote you?  I think it's almost been A MONTH since I've posted... which might be a record long absence.  I think we were a week away from our benefit concert when I last wrote.  Well, that went amazing.  We had over 600 people attend and we raised over $7,000 for PUCK, which gets doubled to $14,000.00 thanks again to the EBMRF/JGSF Challenge Matching Grant that runs through the rest of the year.  Those are just the numbers, but let me tell you the stories that make those numbers even more special.

1.  The tickets were $15, and we had just under 500 but tickets.  The rest were guests who donated items to the event or volunteers/bands/stagehands, etc.  Two of the TEN bands on the bill are releasing new records right now, and they are only charging $5 for their CD release concerts.  $5 is the going ticket price, even for the hot bands in town, so to pull that many through the door at $15 a head was really an accomplishment.

2.  While I was backstage, listening to the singers from HEEAAAVVVYYY metal bands say things between songs like... "Epidermolysis Bullosa, EB, Pioneering Unique Cures for Kids, Bella..." with their growly, tough-sounding voices was the coolest experience of worlds colliding I've ever been a part of!

3.  So many people from so many local companies affiliated with live production, bands, tattoo parlors, etc. donated literally tens of thousands of dollars in equipment, raffle gifts, and professional services.  Many of these people have NEVER been involved in a charity event or donated to a non-profit before!

4.  We had a ten-man media team shooting HD video and stills for a DVD that will be released in 2013, and every single person on the team donated their time and talent, and the production manager is producing the video FOR FREE and he is PASSIONATE about selling the DVD and making sure 100% of the funds go straight to PUCK.

5.  This next one is intense, I warn you.  When Bella was cremated, I asked the guy to put a small amount of her ashes in a separate pouch for me. I had this wild idea that I would get her portrait tattooed on my chest, and I'd have the artist mix in her ashes into the ink.  Well, I don't have any tattoos, so as time went on, it just didn't seem like me.  In my old band, I wore liquid latex on my head, torso, and sometimes entire body.  During the course of the shows, as I sweat, the liquid latex would peel off in sheets, looking really gory, which worked really well with the vibe we were creating on stage.   Little did I know that years later, Ang and I would have a baby girl where that very thing happened to her, for real.  So, since this was a benefit concert in memory of Bella, and since I was donning the liquid latex again over my entire body, I decided to add that little pouch of ashes, so that she was a part of my skin that night.  It was a really, REALLY intense process, and I sobbed backstage as we got ready to paint me up.  This was truly an authentic way for me to honor Bella.  Art is taking the joys and sorrows of the world and representing them in some aesthetic way that only you can do.  This was the most intense piece of art I ever created.

6.  During one of our ballads, I created a slide show that told our story from Bella's birth to our journey with PUCK.  It had text and photos throughout it, and I choreographed it with the song. It played on a giant stage scrim above our drummer during the song.  It one point in the song, we hit the emotional climax of the tune, and it coincides with Bella's death.  As the music resumes, I put a few, special pictures of Bella's famous stare.  During one of the pictures, I turned around and looked up at her.  There were were, the two of us, on stage together at one of the heaviest heavy metal shows one could put together,  changing lives.  Angelique worked our PUCK booth at the concert, and even before the song was over, people started flocking to the booth to learn more, tears in their eyes on on their cheeks. Art makes you feel.  As a band, I honor and thank my band for completely supporting my desire to take a live crowd to such a sad place in order for them to feel the reality of this disease.  My band couldn't have been more supportive, and I owe each one of them a giant debt of gratitude for the support and sacrifice that it took to put this concert on.

I am a lucky guy.


Someone somewhere taught me that no matter what happens to me in my life, I get the last say.

I get to decide what meaning I give to the events unfolding before me.

I get to make art out of life.

I am not special.  Each of us has this ability.  The medium we choose in which to express ourselves is TOTALLY and UTTERLY irrelevant.  What matters is that THE CAPACITY lies within each of us.  We but simply need to remember this, and in the knowing of this one little thing, our lives can be forever transformed...

... by us.

What a gift.

In other PUCK news, we are hosting a brunch THIS SATURDAY, December 1 in Maple Grove!  It is called, WINGS OF HOPE, and will feature 3 amazing speakers, Dr. Tolar, Trisha Knuth, and Marc Seymour!  It is hosted by Christie Zink and Jenn Nick and tickets are only $15!  IF you are interested, there are tickets still available!  CLICK HERE to go to the event page and register!  All the details are on that page regarding location and time.  Sorry I'm just rolling this out now on the blog, I don't always do a good job with running PUCK, but despite me, we're still working hard and making the world a better place for kids with EB.

God night.

Ali as Laguna Blue from Monster High for Halloween and Julian as Yoda...



  1. Congratulations on the concert!!! I'm sure Bella is very proud of her parents.
    Julian is so cute!Love,

  2. I am so so glad you posted! I was really begining to worry about you guys! What an awesome experience the concert must have been. Love Julian's picture. Ali is getting more beautiful with time! indeed you are one lucky man Tim, you have a wonderful family!
    christiana, cyprus

  3. Happy Thanksgiving to all of you. Many of us have been blessed this past year. God blessed us with a beautiful little grandaughter.
    I am seeing more and more kids with EB. My heart breaks, because I remember all that Bella went thru, and what these beautiful babies are having to endue. I pray a cure will be found soon.

  4. Wish that concert had been local :/
    Julian's Yoda is killing me!!!!!!

  5. So happy to hear the gammet of emotions you were able to experience in doing such wonderful work! You & Ang are remarkable people. I'm honored to kno your story & have th opportunity to, in some small way, be a part of that story as it continues to unfold . Love from Louisiana, Rikki

  6. You make the hard times sublime, and you make the times of remembrance a celebration, no matter how tough they are for you to process. Ringgolds, you are amazing. I can't begin to imagine the intensity of the process you travelled through at the concert, Tim, but I know it was another piece of the puzzle for you. I am mixing my metaphors, but what I think I am trying to say is that the path away from Bella's passing is perhaps to be marked with unforeseen and unexpected gestures, your performance at the concert being one of them. I honour those moments of symbolism that mark the path you forge to remember her.

    She is ever beautiful, as are you and Ang.

    Ali and Julian are the most glorious lovely young people.

    What a family,

    Love to the five of you,

    From my wintry rooftops,



  7. It was not long ago that I first heard of EB, watching a TV programme, and since then, from one blog to another, I somehow got to "know" a small part of butterfly children. I remember the first time I read about Bella, and it was so different. There is something really special about her and I kept thinking about her, her story, could it have been be different, could it be one of happy ending... some questions that I am sure have bothered your mind too thousands of times even though you said that once you knew about the medical trial, you knew your family would go for it.

    I don't know what could be that special thing about Bella, may be it is that sparkle of life in her eyes, looking at her photos and videos, one doesn't get to see her ilness but her vividness, and so, I just wanted to tell you that your sweet baby girl is loved and missed even by a complete stranger who is on the other side of the globe (Eastern Europe).

    I hope you will keep posting updates, keeping this blog alive somehow keeps the memory of Bella alive. Hugs to you and your family (my baby girl is probably more or less the same age as Julian :))

  8. Why have you not updated for so long? Hope that all is well with you.

  9. Happy New Year to you all, dear Ringgolds!

    I am sitting on the edge of a skiing hill in the snow, enjoying time with my family and hoping that all moves on well with YOUR family. Clear skies, beautiful trees shaped and weighed down with snow, kind souls who tolerate my apology for skiing and give me a wide, wide berth, AND.... that sense of hope and freshness and optimism and 'startingover' (if you see what I mean) that comes with a new year.

    Sending you all my best of best wishes for 2013. Love to all five of you,


    From my borrowed snowy rooftop, fondly always.

  10. Tim, Ang, Ali, and Julian,
    I miss your blogging. I hope that Christmas was blessed with family, health and friends. May 2013 be filled with all your hopes and dreams. I pray daily for a cure for EB, for Bella, for parents like you who have gone to hell and back for their child. Fondly from ND, Holly

  11. Dear All,

    Hoping all is well. I sent a holiday message recently, but heard no updates from you.

    Happy New Year to you all, sending you love and hoping to hear from you soon,

    Fondly, always,


  12. Happy New Year to you and your family!
    I miss your post ... Hope you are all well.

  13. hope all is well, missing your updates. you are an amazing writer.

  14. Happy New Year to you and your beautiful family. It was so good to have you back and to hear of all the news about EB. I know sweet Bella is so proud of her family...