Calling all Kansas babies+parents!

Notice anything special about this Web site?

The Kyrie Foundation has been chosen as the Wichita BabyFare's charity sponsor!!!!! Absolutely incredible!

The event (scheduled during Kyrie's birthday month) is a fantastic weekend full of fun & information for expecting parents and those with freshly hatched children. ;) Loaded with baby-focused vendors & speakers, more details will be revealed in the weeks to come. We'll have a booth there, too, plus a few extra surprises we'll tell you about soon.

Just $5 to attend & scope out all the booths. Children under 5 years old are FREE!

Wichita BabyFare
September 13-14, 2008
Century II Convention Hall
Saturday: 10am – 5pm
Sunday: 12pm – 5pm

Thankful Thursday

Today I'm thankful that tomorrow is Friday. Isn't it strange how the shorter weeks can feel so long? I'm thankful that tomorrow is Friday because I can share a little announcement about the foundation. Good stuff, Kyrie fans, good stuff.

What are you thankful for today?

Speaking of gifts ...

Of all the gifts humans are given, children are consistently ranked number one. Perhaps that is because within that one gift arise a million presents. And those million presents, those millions of moments, collectively change our insides, our outsides, our trajectories, our personalities and our understanding. Pretty incredible for a gift that begins without anything but sheer existence.

It's the love.

And love begets love begets love begets love. Kind of like a family tree. This little, squeaky bundle relies on you for everything. You, in turn, provide food, shelter, warmth, hygiene, discipline and love with the hope that he or she grows, learns and makes the world a better place. The "makes the world a better place" is a pretty good return for your investment of time & energy. Plus, someday pieces of your love for your child boomerang back to you. A nifty bonus of this kind of gift.

Watching Jordan & Lacie this weekend reminded me of what loving parents they are. They were an incredible team with Kyrie and continue to be today, working to spare other parents from loss. It's the love.

I remember when I was a child
and I was angry with my parents
In my rage I would say that
'I didn't ask to be born...'
and here so many years later
what a surprise to discover
that yes, indeed, I did ask to be born...
In fact it was very important to me
that I be here...
if only for a short while.

Ron Atchison

Until then ...

Another exciting Kyrie Foundation announcement is waiting! Hope to let the butterfly out of the bag next week.

Until then, we are off to see Kyrie's baby brother, a squirmy, purring bundle from what I hear.

For Memorial Day ...

He has achieved success who has lived well, laughed often, and loved much; who has enjoyed the trust of pure women, the respect of intelligent men and the love of little children; who has filled his niche and accomplished his task; who has left the world better than he found it whether by an improved poppy, a perfect poem or a rescued soul; who has never lacked appreciation of Earth's beauty or failed to express it; who has always looked for the best in others and given them the best he had; whose life was an inspiration; whose memory a benediction.

Bessie Anderson Stanley

Thankful Thursday

And now a Thankful Thursday post from our guest post-er, Chad:

Today, I'm thankful for the the rejuvenating power of rain. It can do wonders for a freshly planted garden or lawn. It also reminds us that there are still things that are out of our control, and we must sometimes adapt to our surroundings rather than adapt our surroundings to us.

I'm also thankful for the unconditional love of my spouse. So often these individuals can be taken for granted on a daily basis, but they are also there to rejuvenate you when needed.

p.s. I did not put him up to that last part. ;)

What are you thankful for today?

Wonderment

Life is filled with suffering, but it is also filled with many wonders, like the blue sky, the sunshine, the eyes of a baby. To suffer is not enough. We must also be in touch with the wonders of life. They are within us and all around us, everywhere, any time.

Thich Nhat Hanh
Vietnamese Monk, Author and Peace Activist

To you, from Jordan.

For us, Friday May 16, 2008, will be a day much like September 1, 2005, in the sense that I have once again been given a gift from God, and such a gift is not taken for granted in the least by me or Lacie.



It has been just over a year since God asked yet another perfect angel to be by his side. From losing Kyrie, my life has been altered in a way that no one can truly understand until they have experienced it for themselves. I have come to cherish the little things in life: a perfect sunrise, children laughing, an elderly couple holding hands in a checkout line. Kyrie has forever changed my life, she will never be forgotten, nor will her presence ever be replaced. She will forever hold a piece of my heart and knowing that she will be there to greet me again is the only comfort that I have allowed myself to have.



Kyrie now has a higher calling; she will be a guardian angel to her little brother. Kamdyn Matthew Thome was born Friday night, May 16, 2008. He weighed 7 lbs. 14 oz., exactly one pound more than Kyrie. It was so bittersweet to see Kamdyn arrive looking so much like Kyrie. All who saw him, that knew Kyrie, instantly saw the resemblance, and we all cried. I cried for my heartache still missing Kyrie, and I cry even now as I write this to know that Kyrie lives on in him.



Today is a bittersweet day of heartache and celebration. Kamdyn will grow up knowing he has an older sister who will always be with him, as she will always be with all of us. She has touched so many lives, and Lacie and I are constantly reminded by it from the cards, emails, phone calls just saying “We are thinking of You” from all of you. It means more than you know. From a grateful yet still heartbroken father, I thank you.

Here it is!

From the very beginning, we've wanted to do something in the meantime. The meantime being all the work that we're taking on to earn the research funds. We didn't want to have to wait until a certain dollar amount was reached to make a difference or to create fertile ground that could spawn a difference in the realm of pediatric brain cancers.

So what could we do? What would it take to start to turn the tide?

At the time Kyrie was diagnosed, both Jordan & Lacie were frustrated at how little anyone knew about PNETs. Nurses were printing out generic articles from the internet for them in PICU. And the doctors? Well, not much better there either. Seems none of the experts, the ones who parents in these situations tremendously rely on, knew much of anything.

Then our cousin Maureen told us about Ethan and his mom, Marcy. Such a blessing to have someone with some real information. Months later, Taya's family found us. And what was the take-away? Communication.

In honor of Ethan's family, Taya's family and Kyrie's family, The Kyrie Foundation has been inspired to create the Parents' Forum on The Kyrie Foundation Web site. We believe it's the families, the parents of the little ones who, by sharing their information, experiences, medical protocols and advice, will be catalysts in the quest for a cure.

This is huge. The parents' forum will serve as a community, a message board for any parent on earth to come share info, ask questions and find support from the only other people on this planet who know what they are going through. We hope that collectively the information shared will be beneficial not only to one another but to the medical researchers as well.

We hope there will be a day where no parent sits at his or her computer and finds us in a Google search. Until then, here we are.

Later today ...

we'll reveal what we've been working on! Hope you're not underwhelmed, but we think it's a pretty important step. Stay tuned!

Gifts of the spirit.

One day I said to God --
I'm going to search
For the meaning to my existence
I'm going to find the talent within me
Then develop it to the best of my ability
And I'm going to make the most of this Life
That I have been given
And I'm going to do this
Without infringing upon anyone else's
Opportunity to do the same
And God replied
'I couldn't ask for anything more'"

Javan

So love, love, love this. You are created unique and special regardless of the circumstances & relationships into which you were born. You have, at least one, probably many gifts embedded into your soul, your psyche and your body for which you are responsible to cultivate and use. Using your gifts is your assignment here.

Some have the gift of song, and despite self-consciousness, if you have the gift of song, please us it every day. Song can soothe a baby, relax the mind, inspire a jig, send a message and bring joy to all those who are able to hear.

Some have the gift of comfort, and despite difficult situations, if you have the gift of comfort, please use it every day. Comfort can soothe the scared, reassure the sick, bolster the spirit and create unforgettable friendships.

Some have the gift of organization, and despite the world's excuses, if you have the gift of organization, please use it every day. Organization can unclutter the soul, re-energize a home, can create more time and can get things done, like curing pediatric brain cancer.

Some have the gift of creativity, and despite what others say, if you have the gift of creativity, please use it every day. Creativity can spawn ideas that solve problems, express beauty, can rid the world of utilitarian blahs and can add life to our days.

Some have the gift of strength, and despite the ego, if you have the gift of strength, please use it every day. Strength can move what seems like mountains, can build a house into a home, can lift the weak and push the world in the right direction.

Thousands and thousands of gifts we could explore here. For me, the gift is words. When I write, I know that I'm doing what I was put here to do, and anything that keeps me from it makes me feel rotten, like I'm committing a deadly sin. Crazy, huh? Writing is my prayer for the world.

What is your gift?

Last call.

Okay, for those of you who meant to send recipes but didn't or couldn't or would have, here's your last chance. We're still in need of a few more side dishes, and remember, if you have a recipe made with a super-food (anti-oxident, phytochemical, cancer-fighting food), we'd love for you to share. Send your side to the ever-popular Jan Munroe, at kyriesnana@kyriefoundation.org.

p.s.
The exciting announcement for the foundation will likely happen this week. Apologies for the pins & needles, but we're just working out a few kinks.

Thankful Thursday

Today I'm thankful for pluck, that summoning of courage, that rising of the spirit, that chutzpah in a good way. I'm thankful for the imperfect perfection of True Grit (1969 with John Wayne), when the least of us acts with pluck. I'm thankful for Patton's somewhat vulgar yet dauntless opening speech. (Remember courage isn't pretty.) I'm grateful for those of you who watch Kyrie's video even though it's difficult. I'm thankful for those of you who keep reading through the tough posts.

I'm thankful for might & heart & fortitude & moxie. That's how good gets done.

What are you thankful for today?

A note about courage.

It isn't pretty. We have this image of a clean, handsome soldier being decorated on a stage with a polished piece of gleaming metal. We'll hear about someone else's bout with courage from the comfort of our own living room or from the convenience of our computer. Sometimes we forget that courage is in the smoke-filled, downward-spiraling cockpit. Or it's on the sidewalk when you're walking toward the last person on earth that you wanted to see. Or it's in the middle of the night with a crying, vomiting child. Or it's in a remote village watching machine guns take down your family. Or it's in a stark, beeping hospital room, far from anything comfortable or pleasing.

And that's just in the midst of your choice to be courageous. What you end up looking like on the other side is likely a tattered shell of your former self, like a starfish with only three arms. The gray hairs & wrinkles from stress & tears. Stretch marks from labor. Scars from accidents, surgeries and devastation.

Thank goodness it's what's on the inside that counts. The inside. Full of imperishable substance: every piece of development, every forgiveness, every instance of generosity, every wrong we've righted, every ounce of courage, every good thought and good deed added like a hand-crafted piece of Venetian glass to the work of art known as your soul, through which the sun shines in a million different hues. Astoundingly beautiful.

All of nature offers lessons on living, free of charge. One morning I noticed a dead tree supporting many living things--fungus, vines, lichen--which taught me that even after death we can continue to support those who live on. Living trees on our property teach other lessons.

One tree has grown around a barbed wire fence. Another has grown around a nail, and a third through a chain link fence. These trees teach me how to accept irritation, absorb the pain and grow around problems. Nature teaches me how to find my place, grow toward the sunlight and bypass obstacles.

To survive, we must be able to change in response to whatever is required by the challenge of the moment. Our bodies know this, but our minds often rebel when change is necessary.

Bernie S. Siegel

Chicken Little.

Some days, more often now than ever, it seems like trouble is lurking around every corner.

From April 1, 2007 through April 1, 2008, this past year has been chock-full of personal and public stories of harrowing paths. Whether it's our own family that has suffered, a friend who suffered loss, a story of California parents that lose all of their young children in a car wreck, Virginia Tech, deadly tornadoes, poisonous Chinese-made toys, the mortgage crisis, global warming, termites—ugh—the list goes on. So many threats that are entirely out of our control. Things that are impossible to predict or prevent.

For us, I've been waiting a year for the other shoe to drop. What next? What more? I've half-looked above me as I've stepped out of the house in the mornings thinking there might be a falling piano, because, indeed, it can feel like the sky is falling.

Have courage.

Make no mistake, courage is not something we're born with. We are simply born with the potential to develop it. We develop it, or rather, circumstances develop it in us, like a photograph, like acid poured all over us to make something marvelous appear. And courage is much, much, much more than hope or positive thinking. Courage is action, even if it's just the act of deciding. Courage is the ability to proceed knowing that the path is not easy. The path is likely fraught with menacing, talking trees that throw fruit at you. The path may lead you in a direction that you never imagined, throw you into the fire, bash you against the rocks and leave you with barely a breath, ragged and scarred. The path will test your mettle, test your body and test your faith.

Have courage.

Because it isn't your fault. Because life isn't fair. Because not everyone gets to have everything. Because in the very, very end it will all be okay. Because we're in better hands now.

To be hopeful in bad times is not just foolishly romantic. It is based on the fact that human history is a history not only of cruelty but also of compassion, sacrifice, courage, kindness.

What we choose to emphasize in this complex history will determine our lives. If we see only the worst, it destroys our capacity to do something. If we remember those times and places – and there are so many – where people have behaved magnificently, this gives us the energy to act, and at least the possibility of sending this spinning top of a world in a different direction.

And if we do act, in however small a way, we don’t have to wait for some grand utopian future. The future is an infinite succession of presents, and to live now as we think human beings should live, in defiance of all that is bad around us, is itself a marvelous victory.

Howard Zinn

In the wings ...

The foundation is working on something really exciting! Stay tuned next week for more info!