Thursday, May 31, 2007

Even Mozart knew her. Sort of.

I've written about the liturgical significance of Kyrie's name (kyrie eleison), and millions throughout the Christian ages would recognize her name as such. Even famous people. Even very historically famous people.

Take a peek at this:

Can you see what's written at the top center?


And can you make out who wrote it in the upper right-hand corner?

Wolfgang Amadeus Mozart! In March of 1779. Cool, huh?

Monday, May 28, 2007


For many families, the month of May is a double whammy, isn't it? For families where someone is missing, the first heartache is Mother's Day; the second arrives as Memorial Day. And I'm guessing that for the families of missing someones everyday is Memorial Day.

In the last week or so, I have flipped through several women's magazines looking for Kyrie. I search the faces on hundreds of pages looking for what she would have grown into. Sometimes I find a nose or chin or my guess at what her eyes would have looked like 20 years from now. Sometimes when I'm falling asleep, I try to imagine things that she would have said or what she would have wanted to do as a profession, what her first boyfriend would have been like or how tall she would have grown. (Very tall, I'm guessing. She had such long legs & long feet for a little one-year-old.) I think about Kyrie asking her first real question about the way the world works or what kind of older sibling she would have been or what kind of mother to her children.

All of these wonderings lead me to what Kyrie has come to represent for me, perhaps for you, too, and what she will represent to others through you and the foundation. Potential. She represents our potential to something good with today because she and a million other children today cannot. The spinning world and its trivialities can subtly distract us from the marrow that our purposes owe to Him today, often times in ways that seem perfectly harmless: celebrity gossip, community gossip, redundancy, assumption, pettiness, doubt, self-produced anxiety, etc. Henry David Thoreau wrote, "Our life is frittered away by detail ... Simplify, simplify." Just little choices in little situations that erode goodness and joy, eh?

Today, I'll simplify. Today, I'll remember. I'll remember Kyrie's valiancy; I'll remember all the soldiers who have lost their lives to give me my freedom, I'll remember my grandparents' worthwhile labor & sacrifices; I'll remember my ancestors who left their homes to give me mine; I'll remember St. Paul in his prison cell; I'll remember Christ on the cross. And I'll remember to take today with me tomorrow.

Thursday, May 24, 2007

Progress Report

Just wanted you to know that we're making strides with Kyrie's foundation. Lots of details and decisions, but we're getting big things done.

• Web site domain secured.
• Commissioned pro bono mantra design.
• Ordering T-shirts as first fundraiser.
• Alliance with national brain cancer research team.
• Meeting with a lawyer next week to set up the paperwork.
• Arranging an accountant for the foundation.
• Professional artist designing logo & tagline.
• Researching secondary fundraising tactics.
• So much more!

And speaking of an update, I thought some stats about this blog might help you understand your role in this little engine that could.

To date, there have been over 23,000 visits to this site in just three and half months.

Between 10% and 20% are new visitors each day!

Visitors from all over Kansas & Missouri but Texas, Massachusetts, California, Arizona and nearly every state in between!

From Montreal, Winnipeg, Vancouver, Mexico City, Panama, Brazil, Venzuela, Argentina, London, Edinburgh, Manchester, Brentford, Wigan, Sweden, Finland, Ireland, Denmark.

From Trier, Stuttgart and Bremerhaven, Germany. From Amsterdam and Heerenveen, Netherlands. From Beauvais and Aubervilliers, France. From Brussls, Belgium and Monaco and Austria!

From Madrid, Spain; Lisbon, Portugal; Milan, Torino, Bari and Bergamo, Italy; and Athens, Greece.

From Harbin and Nanchang, China; Cheonan, South Korea; Japan, Qatar, Isreal and Turkey! From Sidney, Melbouren, Adelaide, Perth and Brisbane, Australia! From Auckland, New Zealand!

Kyrie is bringing the whole world together! Stunning, isn't it?

Wednesday, May 23, 2007

A thought for today.

Thinking yesterday about opportunities for doing good. A couple posts ago, a list of 100 things displayed ideas that any of us could seek to do on any given day. Proactive things, things you plan and commit to do beforehand. But what about the specially chosen opportunities that God gives you—just you, and no one else—to do good? What about those divine ideas that flutter around your mind's screen door waiting to be let in? Have you ever stepped out the screen door to follow one? Do you shoo them away because you have errands to run or habits to obey?

We aren't all called to be nuns and preachers and Third World missionaries, but we do all have missions to accomplish in our own stations. There are moments of grace that come to you that don't come to me and vice versa——moments and opportunities chosen especially for you from which you can gain or provide another's gain. Like Rhonna. She didn't have to help us. This opportunity was hers alone, given to utilize her talent for someone else. We're the lucky beneficiaries of her positive choice. Cool, huh?

Or ... maybe we miss it. Maybe we ignore it or don't see it for what it is. Perhaps another's good rests within our own powers, and we do nothing. That's the worst, isn't it? To do nothing?

If you're up for it, here's a good thought to think for today:

"Every human being has a work to carry on within, duties to perform abroad, influence to exert, which are peculiarly his, and which no conscience but his own can teach."
-William Ellery Channing

Monday, May 21, 2007


After a long day of waiting ...

I think makes for a great t-shirt. Full of heart, eh? Packed with abundant symbolism, too. According to Rhonna:

The heart is for her family & friends' love.
The wings are for her mother's love.
The crown is for Kyrie's presence.
The flowers are for her dadda's pink flower garden.
The banner is in her remembrance.
The swirls are for our action, goodness & research.

Sweet & perfect. Thank you, Rhonna!

Sunday, May 20, 2007

The Who.

No, not the band. Sorry.

Anyone fully vested in the scrapbooking industry would probably recognize the name Rhonna Farrer. She not only posts funky, fun layouts of her own on the number one scrapbooking Web site,, like this:

but she also designs products for Autumn Leaves, like this:

and and digital kits for Two Peas, like this:

Pretty cool, huh?

Her products appear in scrapbook shops and even in your local Target. She conducts creative workshops all over the world and works with Scrapbooks, Etc. and Creating Keepsakes, two wildly popular scrapbooking mags.

So when I asked her about some of her product that I'd used to create that "Go, Kyrie, Go!" message, she offered to create a t-shirt design for us! She offered! As nutty, crazy, busy as she is with a husband, three kids and international design work, she offered!

Rhonna really took to heart the symbolism of Kyrie and what the rest of us are trying to achieve in her honor. I told her that it would be great to have a cool design that attracted someone to buy a t-shirt before he or she even knew what the message was about.

I can't wait to show it to you all tomorow! (I'm a stinker, aren't I?)

Friday, May 18, 2007

Something a little exciting!

We've enlisted the help of a popular and talented artist who agreed to work on a t-shirt design for us. I just saw a sneak peek, and it's very funky, cool. I cannot believe she agreed to help us!!! Such an honor. I'm so excited, I'm about ready to squeal!

So stay tuned for the deets on the Who and the Design! And ... I'm getting ready to put in an order, but I need a handle on how many. How many of you would buy a, say, $13 t-shirt for you or for your friends/family?

Thursday, May 17, 2007

Ears as the patio doors into the soul.

Eyes might be the windows, but ears have entry to the soul, too.

My friend Melissa sent me this song. Whoa. For me, it softly whispers, "go, kyrie, go," meaning I'll pick up my broken heart and keeping going forward. I'll keep going, come what may, until He says I don't have to anymore. Whatever you're battling inside or whatever you're battling outside, I hope this song finds a way to swaddle you and inch you forward.

If You Want Me To

by Ginny Owens.

p.s. Today I am thankful for vocal chords and pianos.

Wednesday, May 16, 2007

Someone else needs your help.

When word made its way around about Kyrie's diagnosis, one of Chad's cousins in Council Bluffs, Iowa, passed it on to someone who knew pediatric brain cancer all too well. Marcy is the mom of Ethan, and Ethan was diagnosed in 1999, when he was five years old, with the same cancer that Kyrie fought. She spoke with Jordan & Lacie early in Kyrie's short battle, offering her hardwon advice and support. Jordan said that Marcy was a tremendous source of comfort when both he and Lacie were submerged in shock and tears.

Ethan's family has fought a long, tough fight, trying new treatments & ideas right & left with reasonable success. The first line of treatment that Kyrie received wasn't even around when Ethan began to fight his cancer. When Ethan was 11, he was also diagnosed with leukemia, a result of experimental treatments years before. He is now 13, and for the past two years, he has been, luckily, fighting the leukemia more than the PNET. Until now.

His latest MRI shows "seed" tumors in his spine. I'm hoping you'll make room in your prayers today for Ethan, his family and the medical team surrounding them. For more info, please visit Ethan's Caring Bridge site here.

Even more reason to raise funding for PNET research, no?

Some day Kyrie's blog will be full, from top to bottom, of joy. That vision is why I love hearing about all the goodness that you are doing, no matter how small. Coloring books and birthday cards and friends committed to regular gatherings and people taking jobs to do good and handmade quilts for fundraising, even just a thoughtful comment or a quiet prayer for someone else--all of this matters.

The strangest thing about giving is that, at first, we think it will cost us, that we will lose something: time, money, energy. But after helping someone (even anonymously), have you ever really felt like you're "out" anything? Oddly, don't you feel full? Don't you feel satisfied, even energized to do a little more?

We who are well, we who are able, have a mighty calling to care. Today, perhaps you can care for Ethan.

Monday, May 14, 2007

Ever thought of ...

Donating an old cell phone? Yep, you can visit and find out how to donate that old-skool cellie to humanitarian staff in the field of poverty-stricken countries.

Donating old luggage? Old backpacks or dusty luggage in a closet? Visit to find out how you can donate your luggage for kids in foster to use.

Donating old prom dresses? Yes, this, too, can benefit someone else. Check out for info on donating the gowns that you'll never wear again.

Interesting how much stuff we have that could benefit others, huh? And this is just the extra, peripheral stuff, not the marrow of God's talent within you. Just think what you could do with that!

When it comes to donating, I hear plenty of people say that they have so much to give away, but they never quite make it to the Goodwill. I've been guilty of this, too, but for the last two years, I've made it a priority errand. This means every season Chad & I go through our closets and the garage looking for items that we haven't used or items we joke about, like white elephant Christmas gifts ... Do we really need an 10-inch candle shaped like a bridal gown? How about those Cliff Huxtable sweaters? A framed poster of an American eagle? I know someone somewhere is looking for one of those. It's not fair that we have it all to ourselves. ;)

So we begin bagging up items and collecting the bags in a corner of the garage. When we have four or five Hefties and maybe a dinky file cabinet or an orange, tweed, ruffled, hide-away couch to go with them, we make a run. Better yet, some organizations come and get your stuff, too! Here in K.C., Missouri Council of the Blind and Big Brothers, Big Sisters make scheduled pick-ups. Cool, huh? The orange, tweed, ruffled, hide-away couch got a chauffeured ride on the town courtesy of Mo. COB.

And not only are you helping organizations earn money, but you're freeing yourself of unnecessary stuff—the stuff that keeps you dusting or laundering or putzing instead of thinking and doing and soaring.

I'm with motherof2 in her comment on the previous post. I'm just thinking of what I can do next! Go, Kyrie, Go!

Sunday, May 13, 2007

Once a mother, always a mother.

Here we are. Mother's Day. Often times when people hear of tough situations, as a means of comfort and sympathy, they say, "I can't imagine what you must be going through." This may be true for some, but for me, I can imagine. I can imagine what it would be like to wake up as someone else and take on their day, their packages of pain or pride.

Today, I can imagine a mother whose child is a happy angel, always together yet not an earthly minute goes by where she feels whole again. I can imagine the mother who would burst with glorious joy to have a hug or to hear a giggle. I can imagine a mother wanting to wake from a nightmare that never seems to end. I don't know about where you all are, but here in the Midwest, it was a beautiful, warm, summery, spring day. I think that was Kyrie's gift to Lacie.

Leah left a wonderfully encouraging comment on the previous post. Good to know even though weeks have passed that you're all still front & center.

One of my favorite mothers of all time is Erma Bombeck. Erma's writings characterized a mother's wit and wisdom in fantastically universal ways. In fact, when our "Go, Kyrie, Go!" cry started, I remembered a quote of hers that really applies to how, I think, we should go forward. What do you think?

"When I stand before God at the end of my life, I would hope that I would not have a single bit of talent left, and could say, 'I used everything you gave me.'"

Thursday, May 10, 2007

Family Ties.

Kyrie's Aunt Manda & Uncle Ryan are somewhere near Hays, Kansas right now with their two dogs and two vehicles packed with stuff. Today they are moving from mountainous Colorado Springs to soggy Kansas City, a plan put into motion by Kyrie herself.

Being a lead-footed, eight-hour drive away has meant compromising around the holidays and missing out on good, ol' Thome fun. And then there's the not-so-fun stuff, which is, frankly, even more important. When we were all in the hospital waiting room during Kyrie's first surgery, Aunt Manda was booking an emergency flight into Wichita. That day, gravity started pulling a branch of the family tree closer to home.

It was also during Kyrie's first stay in the hospital that Manda & I hatched a little plan to donate our hair. Manda's is shoulder length, which means growth would take awhile, but as soon as she got back home, she started taking prenatal vitamins to make her hair grow faster. I started deep conditioning mine.

Locks of Love only needs 10 inches, while Wigs for Kids needs 12. The good thing is that even if these organizations can't use the hair for their own purposes, they can sell it, which still helps their cause. Anyone done this before? Have a recommendation?

I've lost count of how many people have said, "I wish I had your hair!" My grandmothers, my friends who smelled like permanent solution, my coworkers, men in the aisles of Wal-Mart, women on planes, the balding, the braided, old, young, children even—they've all said this to me. My 'do is naturally curly, and as curls go, I think they're kinda nice, too, though I've just recently come to this decision. Junior high was a frizzy nightmare. I got this hair from my dad. Jordan got it, too, but when Jordan grew his out in 2004 (just in time for my wedding), he looked kinda like a buffalo.

So when I think about lopping off these locks in a month or two (or three, depending on Manda's vitamin intake), I feel good knowing that I wouldn't really be doing this if it weren't for a pretty little angel that we all know. And ... for all those people wishing for this hair, well, someone will finally get their wish granted.

Wednesday, May 9, 2007

A must read.

Wow. This article is so rich with faith, struggle and explanation that you may have to read it more than once. It really gets to the meat of why struggles happen and what you're supposed to do with them. In this case, it's cancer, but it really could be anything with which you're wrestling.

Grab a cup of hot java or herbal tea and pull up a chair. This is a keeper.

Tuesday, May 8, 2007

This little light of mine ...

Officially, we're into our second month post-Kyrie. In some ways, it feels much longer, like childhood time, when a day feels like forever. And in other ways, it feels like yesterday that she pointed to the pantry for "num-num."

[big sigh.]

Thanks to the thoughtfulness and generosity of a friend, Jordan & Lacie spent a long weekend out of town. It's so good for broken-hearted parents to heal together, just the two of them, for a little while anyway. In the same breath, though, they've been so grateful for all of the company and calls and cards and comments. Kudos to you all for making the vague term "support" actually mean something.

Last Friday, after a string of dreary days, the sun came out in time for my long commute home. Windows down, iPod on, that 80s hit, "Girls Just Want to Have Fun" sang through my ears, and I thought of our girl. She would have loved that song. So happy, so fun. She was just getting the hang of dancing. Tears streamed, but for the first time, I was crying and smiling thinking about Kyrie.

My giant Permasmile came from knowing that we're doing good stuff with her and what she represents in mind, which means this is working! She's working! You're working! A cousin of mine told me Friday night that it's like tiny pin lights of good all over the country beaming up toward heaven. I like that.

Who knew that twinkling stars could shine from Earth instead of from the sky?

Sunday, May 6, 2007


I shrieked out loud reading your comments! Incredible! Yes! We would love any and all help that any of you may have to offer. We're newbies at this.

And great minds think alike, Erin! I'm working on some designs for t-shirts, etc. and maybe even a stamp or stickers (to put on envelopes and what-not) that will let the world know--in a small way--that you're doing something good and that doing good matters.

The coloring books! I raced outside into the rain to tell Chad about it! A slow, giant grin stretched across his face, and I think he even welled up.

Aah. Good is so good.

And over the weekend, I made my card to send Shane. Hope he likes it.

Friday, May 4, 2007

Paying it forward.

So good to hear that cards are being sent to Shane! Love it! I don't know about you, but for me, it seems the more good acts I choose to do, the more I see to do. Heightened awareness, like a flower that turns to face the sun. Have you ever thought about that? How is that possible for a flower with no muscular system to do that?

Which way will you turn?

I think I'm going to write "Go, Kyrie, go!" on all of my mail. ;)

And the cool thing about you having heightened awareness is that those in your circle of influence will be influenced. Your spouse. Your kids. Your parents. Your friends. We learn by example, don't we? Good or bad. Good: How to make Paula Deen's cornbread stuffing on the Food Network. Bad: How to have your priorities way outta whack with "My Sweet 16" on MTV.

So Chad & I have been pulling ideas together for some way to make the world better for Kyrie's sake. And we've decided to start a non-profit organization! For right now, our first tier goal is to eliminate the fatality of PNETs. Twenty years ago, leukemia was thought to be a death sentence. With funded research, today that's not the case. We want the same to be said for brain tumors.

A few compelling facts:
• Brain tumors are the leading cause of cancer death in children under 20, now surpassing acute lymphoblastic leukemia. They are the deadliest type of childhood cancer.
• The incidence of brain tumors is increasing, but the reasons for the increase are unknown.
• Even benign tumors can recur and result in death.
• There are more than 120 different types of brain tumors, making effective treatment very complicated.
• At this time, brain tumor research is underfunded and the public remains unaware of the magnitude of this disease. The cure rate for most brain tumors is significantly lower than that for many other types of cancer.

We have a couple ideas to get this off the ground, and there's been a surprising number of people who want to do something with us, like Chad's colleagues volunteering a bake sale or to stuff envelopes!

So stay tuned because we want to share more of this idea with you soon!

Thursday, May 3, 2007

Teach the young.

First grade was a toughie. The entire 1981-82 school year was fraught with eye patches and eye surgeries following an accident I had with a sharp-cornered, wrought-iron TV stand on wheels. One day when my eye patch was particularly itchy, a slew of construction paper & crayoned cards arrived from Clearwater Elementary School. The entire first grade handmade greetings just for me! I wasn't forgotten! "Get Will" and "I hop you fil beter" messages piled high all over my Barbie bedspread. I was thrilled.

So that's what I was thinking about when I received a message from Leah, a commentator here on Kyrie's blog. She's been thinking about Kyrie, Jordan & Lacie a lot and a message came to her about a Canadian boy battling acute lymphoblastic leukemia. The outlook now looks pretty good for 7-year-old Shane Bernier, but it hasn't always. Despite hundreds of doses of chemo, he's still a kid, and he's at that age when "world records" are the epitome of goals. His goal? To receive the most birthday cards.

You may have received this e-mail forward, too. I checked it out on (a good place to double-check urban legends and stuff). Shane is legit, and his birthday is May 30. So I thought maybe this would be a good "Go, Kyrie, Go!" project for your children. Something creative, something compassionate. You can learn more about Shane here, and you can mail cards to this address:

Recent News
Shane Bernier
PO Box 484
Lancaster, Ontario
K0C 1N0

And Leah's e-mail P.S. reads: GO KYRIE GO!!!!

My itty, bitty Thankful Thursday thing is yellow construction paper. ;)

Wednesday, May 2, 2007

Virtual Butterfly.

Susan e-mailed this week about Victory in the Valley, a cancer-support organization in Wichita that does a lot of good work supporting patients, families, caregivers and survivors. It's really a 360-degree approach to cancer support. On their Web site, they have a virtual butterfly garden--this is what Susan sent me.

I have a little trouble on my browser seeing Kyrie's butterfly, but it's there. A pretty little yellow one. UPDATE: It looks great now!

They're also having a fundraising walk/run on Saturday, June 2, if you're looking for a way to get some exercise and help a good cause.

Still mapping out some ideas to share this week. Very exciting!

Tuesday, May 1, 2007

Seen and Unseen.

This verse makes me feel much better when I'm tormented by the wrongness of this grief. It's the hope for which I've been looking. Maybe it will help you, too.

2 Corinthians 4:16-18, "Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen. For what is seen is temporary, but what is unseen is eternal."