Thursday, January 28, 2010

friday funny

We had a little time after our PBTF meeting in Asheville, so we motored downtown to find the Mast General Store, a landmark of sorts to make you feel like Ma Ingalls picking up supplies at the Olsen family store. Powder keg barrels brimming with old-timey candy, racks of outfitters' clothing and a toy section with long-standing favorites.

As a child, I remember carefully pulling bits of magnetic shavings with a red plastic wand over the top of a cartoon drawing of a bald man. Wooly Willy fascinated me for hours at a time. Little did I know that I would grow up to marry him. ;)

Thankful Thursday

Today I'm thankful for good stewardship. It's more important than we realize on an average day to manage the blessings for which we are responsible. Be it talent or time or money or items or gifts of the spirit or even our children and relationships with others. How we manage those—how we manage our lives—is quite a task.

Just so you know, the travel costs that Chad & I incurred on our trip to Asheville were not paid with Kyrie Foundation money. You gave that money to us to be used for the good of the foundation's mission to fund pediatric brain cancer research. Though it could be argued that the trip was a fulfillment of that mission, we would rather preserve your donations for the research or the means to raise funds for research.

And ... we rented our car through Avis on GoodShop! We bought our hotel using Priceline on Goodshop! The airfare, too, was put to good use. Isn't it great when there is meaning behind a purchase?

Oh, so thankful to have something to give.

What are you thankful for today?

Tuesday, January 26, 2010

The cheerful giver.

We're back, and what a visit we had with PBTF!

First off, our travels with far from perfect but safe, and when you're buckled into a steel tube zooming through the air, that's all that counts. Before we left, I kept thinking about the children and families we've met along our journey. I wanted to take them with us; I wanted them to be present and accounted for and held close. They are for whom we have worked; they are what have tied us together. So I just thought maybe I could tie something together to represent them.

A ribbon for Kyrie holds onto Ethan who holds onto Taya who holds onto Anna who holds onto Patrick who holds onto Marley who holds onto Kate.

We spent nearly four hours with Dianne Traynor, co-founder of PBTF, and Brian Traynor, executive director of PBTF. They knew about the upcoming scrapbook fundraiser, and we're amazed that we have raised such a large amount in a short amount of time, time that we have also been required to use building a nonprofit as well as grieving and managing life/work. In Brian's words, our check was "galactic."

I always knew what we were doing was good, but I had no idea that our work was so important. When I chose to update the web site instead of watching American Idol, I had no idea how crucial that decision was. Every time we've chosen to put effort toward this fight instead of something else, that choice really did matter.

We are so fortunate to have PBTF as a partner in this fight. So grateful for their unbelievable work for nearly 30 years. Our hope for The Kyrie Foundation was not to become another PBTF, not to reinvent the wheel, but to help them achieve more faster. A few thing you should know about PBTF, who we have partnered with:

• They believe that every dollar must be accounted for. They are fully committed to good stewardship and demand that of the projects they fund.

• Even though they have met thousands of children fighting brain tumors, they are not calloused, cynical or tired. They asked to hear Kyrie's story, and truly empathized, knowing that we're all in this because of stories like hers.

• They require researchers, doctors, scientists to work together, to collaborate and share ideas. This team-mentality not only is the most economical way to work but also the fastest way to a cure.

• A particular doctor who PBTF funded discovered information in his work that became an important step forward for breast, prostate and melanoma cancer research, too.

• They began just like us, with an idea, help from friends and a house overrun with event stuff!

• Every research project goes through review with their advisory board. This means money is not given to a project that won't truly advance the research for pediatric brain tumors.

We met everyone who was there that day in their offices. So inspiring to meet a group of people dedicated to what they do. They "get it."

The PBTF presented The Kyrie Foundation (that means all of you) with a beautiful glass award, which we hope to display at each event this year for you to see for yourself.

Then we thought, hey, guess we should give them the check!

PBTF has a beautiful and newly constructed stained glass "quilt" where they honor gifts of $10K or more.

They had already added The Kyrie Foundation to the wall.

You should also know—because they wanted Chad & I to clearly know—that this $50,000 gift is very important to them. In Brain's words, our money will be used to launch something "revolutionary." Yes, they receive governmental grants and earn large amounts of money through their own fundraising, but they made it clear that they knew how hard it is to earn this kind of money and that it needs to work hard for the cause.

So, what's the working-hard-"revolutionary" project you ask? Well, it's so new and on-the-brink that details are still being finalized. We should be able to make an announcement in a couple of weeks, though. Isn't it SO exciting to know that we're all a real part of the solution? We're all REALLY doing something to cure cancer.

In the meantime, 2010 is underway, and so is our commitment to keep going. For the next $50K, we're going to need more help. So if you're inspired by this in any way, if you have ideas or skills that you're willing to share, if you can help us in any way, e-mail me!

Give, and it will be given to you: good measure, pressed down, shaken together, and running over will be put into your bosom. For with the same measure that you use, it will be measured back to you.
Luke 6:38

Thursday, January 21, 2010

The Big Give!

(which happens to begin on a Thankful Thursday!)

Today, Chad & I prep and pack to jet to the airport for our flight to Asheville this afternoon. Why, you wonder? Oh, just to deliver a little something we like to call The Kyrie Foundation's $50,000 Research Grant!

Can you believe this?

Moments arrive when I gush in disbelief: we thought this day would never come. There are other moments when I come to a complete stop, thinking I never knew we'd have to come to this day.

Just two years ago, we were nursing an emotional amputation, putting hope ahead of hurt and taking a giant leap of faith with a few, especially brave friends. We had no idea how to make $50,000. We brought no clout nor any particularly easy connections to corporate giving or to wealthy endowments. We just accepted this assignment to not only make something from nothing, but to make something nearly impossible happen from a deficit.

I flip through my worn pink notebook, a notebook that my husband gave me to support my unshakable call to compose, a call which I regrettably have shelved in order to make time for this work. In this book are notes, lists, business cards, ideas, priorities, phone numbers, scratchings and tangents that sing in chorus the harvest of each Kyrie Foundation event, meeting or get-together. A friendship bracelet braided by my friend Madison serves as my bookmark.

It's hardly the book I thought I would write; no one would publish it, and certainly no one would pay to read it. However, this book holds the sketch that turned into the Twilight Walk logo ... the name of our BabyWaves friend we made at the Wichita BabyFare ... notes from a plethora of art auction meetings. More than entertaining thoughts in a reader's mind, these writings became real.

Have you ever given away $50,000?

Well, you're about to!

And not as in some bureaucratic transference between banker and mortgagor. I mean $50,000 to give away. Fifty-thousand dollars that morphs into science. Science that distills itself into a cure.

On one hand, our small piece of paper, known as a check, could have flown as a paper airplane or maybe would have been gnashed into a piece of construction paper. I like thinking that maybe the hands of a child would have touched these papyrus fibers if gone another direction at the paper mill. The ink on our check could have been pressed into a love note or a grocery list. Ordinary items have been called to an extraordinary task. Kind of like us.

We have been bowled over and blown away by this short journey with you. You made this possible. You have gently stood alongside us, cried with us, given us your time, your talent, your treasure. We could even take the "foundation" part out of the mental equation because really your have given your time, talent and treasure to help small, sick children and worried families.

When Kyrie was sick, I remember thinking about "them" and "somebody." Why aren't "they" closer to a cure? Why aren't "they" doing more? Don't "they" know how fast this cancer works? "Somebody" should speed this research along. "Somebody's" probably already taking care of these things, right?

Little did I know that we would become "them" and the "somebody."

I wish I knew how to calculate the number of times I have used the words "thank you" or "gratitude" here on Kyrie's blog. We can't say it enough, we can't say loud enough or big enough or piercing enough to truly convey how it feels to be humbled by your goodness. Every time you've come to an event or told a friend Kyrie's story or typed in something on GoodSearch or commented here on the blog—it has all mattered. It did not go unnoticed. Honestly, we really could use a volunteer whose sole purpose is that of Thank You Director!

You know, we all have different gifts, different ways of processing information, different ways of expressing ourselves, different faults and challenges. So to be able to come together as a group, to work beyond those differences, is, I believe, one of Kyrie's miracles.

Think about it: little Emma & Abby, Frosty and Elf Rita, Terry the Bead Queen, Dr. Rosen, Stephanie Murrell and her Girls Day Out, Jo Degner, the Andover Central Girls Softball Team, Kyrie's Gift, the Wilkinson family, Brett and his braided bracelets, Amy Nelson and her Kyrie's Fighters, Londoners Julia Pott and Robin Bushnell, the Friend family, Making Memories, Bill with Accent Mobile Music, Singer Sewing, artist Keri Smith, Bonnie and her smoothies, the 10 people in Maryville, Missouri who bought t-shirts at our very first outing (Relay for Life), the Nienke family, the Swob family, Kathi Wilkin whose friends donated as her birthday gift, the Stolz family, Bobbie who donated from her Premier Jewelry party, Christy Freeman and Cara with Scrappin Boot Camp, artist Tuesday Schmidt and her creativity, Kelly Jackson, Julie Reed who designed our logo, Sue Martin who printed our t-shirts, all of those businesses that have donated in sponsorship to the walk, to the art auction, the Twilight Walk's silent auction, the krop's silent auction, those who have managed to juggle life, grace and this leap into philanthropy, Trish, Lacie, Jordan, Danny, Melissa, Chad and of course, so many, many more who have been angels along the way.

Thank you.

Thank you.

Thank you.

Thank you.

Thank you.

We do no great things. We can only do small things with great love.
-Mother Theresa

What are you thankful for today?

Tuesday, January 19, 2010

Scrap like you mean it!

Calling all scrapbookers and papercrafters! Guess what's scheduled for the next Kyrie Foundation fundraiser—or should we call it a fun-raiser? Ha! You got it: The Kyrie Foundation's 2010 Krop!

Come scrapbook, make some cards, work on an album, organize your photos, get ideas, gab with the girls, shop around and have a creative day away to help raise research funds for The Kyrie Foundation!

Saturday, April 10, 2010
9:00 a.m. to 9:00 p.m.
Family Church, 11135 W Kellogg
Wichita, Kansas

Just $45 per seat includes:
complimentary coffee, tea, water and soda
great goodie bag
fab freebies
shared tool station
chance to win door prizes from K&Company,EK Success, Creativity Inc. and more!

And if that weren't enough, we'll have on-site massage therapy, a mini silent auction and our oh-my-goodness! garage sale—all to raise some extra dollars to save children from this blasted cancer.

Wait—there's more! Vendors are coming on board to give you a shopping stretch break: Bonnie Kissinger with JuicePlus (remember her DEE-licious smoothies from last year?), Kathy Clapp with Close to My Heart, Scrappy Chicks, Megan Lawrence with Uppercase Living and more on the way!

Our dear, dear, dear friend-of-a-friend Cara with Scrappin' Boot Camp has once again made it possible for you to easily and securely register online through her Scrappin' Boot Camp site. She has been so generous with us each and every year. Or, if you'd rather contact the magnificent Christy Freeman to reserve and purchase your seat, you can send her an e-mail at Oh—did I mention that seating is limited? Yep, it is and that's so you'll have plenty of space and elbow room.

Stay tuned for more details as they happen!

Monday, January 18, 2010

Spare a prayer.

A gentle reminder that Kate and her family still desperately need your prayers. Her parents are meeting with doctors at the Children's Hospital of Los Angeles (one of the places where our grant money could go!!!!!) and at Cedar Sinai for second opinions.

And please, please, please send a prayer up for Connor Haughn and his family in Indiana. They are approaching a fateful day, after long battle with brain cancer, that is simply beyond words.

Friday, January 15, 2010

Grieving for good.

If you caught Oprah yesterday, you heard about Nate Berkus helping 12-year-old Aaron and his family work through grief over losing Aaron's twin brother, Eric, three years ago. These adorable twin boys were born to loving parents and welcomed by an older brother. Precious. Joyful. Happy.

"From the womb, Aaron and Eric were inseparable. "In the sonogram we saw once, they were holding hands," Angela [mother] says."

As the story progressed past the opening, I began to feel anxious. Oh, no. What happened to Aaron? We're getting closer ... they're going to explain what happened ... oh, no ... please, God, please don't them say "brain tumor," please ...

"Eric was diagnosed with a benign brain tumor. Treatment reduced the tumor to nearly nothing, but it came back. This time it was cancerous. Three months later, Eric died at age 9."

I lost it.

This lovely family, happy boys, decimated by something that no parent can control, prevent or cure. A 9-year-old boy so sad over the loss of his brother tells his parents, who just lost one child, that he doesn't want to be here anymore. The agony, the heartache, the loss, the confusion, the unanswered questions and the unrelenting pain that is yours to feel first thing every morning without escape, without relief, without cessation, no matter your pleading for grace, comfort and understanding.

"When Christmas came, we went into a toy store. I couldn't breathe," [says Angela.]

Three years later, the emotional devastation remains.
"There are some days it's just not possible. I feel I'm still under the covers and it just doesn't go away. There's always something. There's a song on the radio, you have his birthday, then you've got the day he died. And that month, I just scratch it off 'cause I can't get anything done ... then Thanksgiving rolls around, then Christmas rolls around.

I feel like somebody's just sticking it in my face: he's gone, he's gone, he's gone, he's gone."

Nate responded,"Like everything is designed to remind you."

Isn't that the truth? You feel tortured, blindsided by a tune, a photo, a phrase, a word, a scent, a stranger's laugh, a sock that you thought was long gone, Easter dresses, a TV rerun, a train whistle ... you think you're relatively okay and then, without warning, without intention, sucker-punched.

"[Grief is] not a road that you just pass these landmarks and then eventually you're fine," he says. "I know that it's a road that you're on that some days you feel really strong and then some days you're back to, like, a complete horror. And I felt that in their house ...

You have no idea the pain that people walk around with," says Nate."

So true. Just another reminder that we need to be gentle with one another, to exhibit compassion as we would want others to be compassionate with us–because pain this large often distorts thoughts, words and deeds.

With compassion and support from his pediatrician, parents, Nate and Paula Deen, Aaron is baking in honor of his brother Eric, a little business where he bakes cookies, sells them and gives the money to charity. Love this.

And from us, I believe the work we're doing here with The Kyrie Foundation is for Eric, too.

Thursday, January 7, 2010

Thankful Thursday

Today I'm thankful for getting the opportunity to keep going. We all got a whole day today, a morning, a lunch, an afternoon, an evening. We all went for another spin around the earth's axis, and with grace, we'll get to go around the sun again this year.

Sometimes it's difficult to recognize the gratitude in another day, especially when the days are painful. It's easier, I suppose, to cherish each minute after suffering great loss, acutely aware that today is such a wildly generous gift. Tomorrow? Well, it's not a given. I remember in college having great deliberation over a professor's question: "We know the sun is going to come up tomorrow, right?" He said that if we didn't agree that we were pessimists. For me, I couldn't say for sure, for real if the sun would, indeed, come up the next day or not. I knew there was a good chance, but since I'm not in charge of giving the earth another day, I didn't think I was qualified to answer the question.

And for us here working like mad to fight cancer, we're going to keep on keeping on. One research grant achieved; however many more it takes to go. We get to keep going. I guess we could have stopped here. We could have said that this is good enough, we've done our part. But how would we explain that to Kate and her family? She desperately needs our support, our prayers and the very real work that it's going to take to save her and children just like her. To stop now would have been a hurtful disservice to all of the families who are watching their Kyries tonight.

It's a privilege to be allowed the opportunity to keep building, keep working, keep moving ahead, especially with the many threats and distractions that are waiting to blow into our path like Texas tumbleweeds across our thin trail of sparkling wonder dust. This is hard work, no doubt about it. This is also how we've been asked to serve. Order up. ;)

What are you thankful for today?