Change of Plans!

For the past six years during the month of September (National Childhood Cancer Awareness month), we have organized the wonderfully successful Twilight Walk, an evening that families have come to know as a safe place for kids to play, eat food made with love, learn of great local businesses and support the need for a pediatric brain cancer cure.

Over the years we've had a ton of people ask us about a 5K. You guys gonna have one? A 5K would be a great fundraiser! Have you thought about a 5K? 

We are happy to announce, this year, we have generous volunteers who have stepped forward to chair such an event! The Kyrie Foundation 5K & Family Fun Walk will be Saturday, October 25. 10:00 a.m. Sedgwick County Park. YAY!!!!!!!!

We are thrilled to add this kind of event into the mix after so many requests! However, as you know, we are a teeny, tiny group of resources. With such a similar event happening within a month of our traditional Twilight Walk and taking place in the same market, we have decided to put our resources behind trying something new this year. It was a hard decision, but we are a group that likes to grow and are willing to try new things for the sake of raising more awareness/funds for these families.

What does this mean for you?
I still want to do the walk with my family! You can! We will still have a family walk in conjunction with the 5K.
Will I still get a t-shirt? Yes, 5K registration will include a tee. Details upon registration.
Can I fundraise like other 5Ks? Yes! You'll get instructions for that when you register.
When can I register? July1. Stay tuned for the link!
How can I help? We are in need of cash sponsorships and prize sponsors. AND ... we would love for all participants to use the month of September (Kyrie's birthday month) as a special time to fundraise through sending emails, social posts and any sort of offline fundraising. It'll be a great way to lead up to your event!

The Day the Angels Came

The Day the Angels Came
a grandpa's prayer and poem for Kyrie Dawn

Wednesday, April 4, the day we heard of the explosive growth of the tumors

Alas! O, Lord what is it that I hear?
Is it Your angels coming for our Kyrie Dawn?
O, please Lord, keep them at bay--
If just for one more day.

Thursday, April 5, Holy Thursday

O, Lord, what is this I hear?
Is it that You need another little angel to be near?
O, please Lord, please Lord, don't take our Kyrie dear.
Could You please keep Your angels away,
and we could have her just one more day?

Friday, April 6, Good Friday

O, precious, sweet Jesus, is this the day?
No, no, dear Lord, not today--
This is Your day that You died to save.
Again, please Dear God, let us be selfish
and keep sweet Kyrie another day.

Saturday, April 7, Holy Saturday Easter Vigil

Thank you dear God in heaven
for yet another precious day--
For we all know things will be done your way.
Little Kyrie Dawn is fighting so very hard--
Yesterday she three her ball three times
till her tiny arm got tired.

Angel of God, my guardian dear,
To whom God's love entrusts her here,
Ever this day be at her side
To light, to guard, to rule to guide. Amen.

Sunday, April 8, Easter Sunday

Dear God in Heaven, Your angels came last night,
As we all knew that someday they might.
They came around the hour of seven
to take our precious one to her
special place in heaven.
Sweet Jesus, we know that you, too, love the little ones,
so to You we give You our little Kyrie Dawn--
And in the end, it is always Your will that will be done.

Amen.

Love,
Papa

originally published April 7, 2007

Thankful Thursday

It’s irrational.

Completely irrational but real to me nonetheless.

This time of year always hangs heavy around our hearts.  The last of winter’s grip and the first breath of spring will forever remind me of Kyrie. In fact, spring’s first pink bloom I often think is her gift back to everyone here, especially those who are helping to find a cure.

This time of year, I feel more. Colors are Technicolor. Sound is Dolby surround. And my memory is in HD. The day Kyrie left the hospital for the last time, it was snowing—in April. My friend Julie had knitted and sent a darling pink hat for her, and it was just what Kyrie needed that day when no one expected the snow. That pink is ablaze in my mind. The snow and tears landed on my cheeks like soft, cold fingertips. I screamed to God in my head all day to spare Lacie and Jordan this heartache. We knew what was coming, but we didn’t know how it would arrive.

August 31, 2012. I knew what was coming, but I didn’t know how she would arrive. Due at the end of September, I didn’t know that my pregnancy would be over in just a matter of hours. Born three and a half weeks early, our daughter, Kyrie’s cousin, was born on September 1, which allows her to share Kyrie’s a birthday. This Godwink, this one-in-a-bajilliongajillion occurrence, is not lost on me.

For the last 18 months, I’ve been watching the timeline of our daughter. I watch for the smiles, the milestones and the stories that correspond with Kyrie’s life.  Oh, she was sitting up before spring! Oh, she was cooing and teething during the summer! Oh, she was marveling at the tree in December! And since January, I’ve been half-breathing.

It’s irrational.

But real to me nonetheless.

If she trips and falls, I wonder if she’s starting to lose her balance.  If she’s tired and her eyes are heavy, I study her eyes closely to see if one is droopier than the other. If she leans to one side when she’s dancing, I watch to see if she’s able to stand straight again. If she pulls on her ear, I wonder if she had a headache—a headache from what????

I am fully aware of each elusive moment. And I freaking don’t care if I look like a “helicopter” parent. I want to be in this moment with her because I’m not sure how many more I’ll get. I need to make time matter because I know—I know—this life is delicately precarious.

And accounting the minutes, the hours, the days, and the years alters behavior. For me, it recently altered my career. I concluded that time was more valuable than money, and if I could amass 10 more minutes a day, 30 more minutes a day, 90 more minutes a day, well, with compounding interest, I’d be wealthy in a couple heartbeats—hers and mine specifically.

To those unable to fully sympathize the loss of a child, my frame of mind may seem banal or sentimental. With a disposable worldview, it’s easy to assume this. I assure you, though, that putting first things first allows me to lead my life instead of follow it.

So time is ticking toward April. And while I still weep at the loss, I also joyfully watch for the gifts, the opportunities to make it right, to make it count. And that’s the mathematical secret of life, isn’t it? As your days count down, the moments should add up.

Think of life as a terminal illness, because if you do, you will live it with joy and passion, as it ought to be lived.

--Anna Quindlen

10 Ways You Can Help

Hello blog, old friend. It’s been so long!

Yes, yes, it has. And why is that? Well, …

1. Facebook is where everybody gets the latest, because who has time to read more than a status update these days??

2. We’ve been busy. Busy working with a skeleton crew to do big and real things to put up roadblocks for this beasty cancer.

However, that doesn’t mean we haven’t been thinking deep thoughts and wanting to share.

We are in the season that grips me personally each year. And this year in particular, at this time, I am acutely aware of children’s brain cancer. More on that in a later post.

The last 365 days have connected us to so many blessed little souls through Amazing Donna’s work with the Blanket Outreach Program. She contacts families with children fighting cancer, learns a bit about them and then handcrafts a blanket with their name and the foundation butterfly embroidered in the design. Each blanket is soft, warm, filled with love and prayers.

She talks with every family.

She makes every blanket.

She follows every story.

I’m sure you’ve seen the Facebook posts or maybe someone sends and email, alerting you to the need for prayers because a baby/a toddler/a kid/a teenager is fighting cancer. And maybe you “like” it. Maybe you even “share” it. But maybe it’s too tragic to read or share. Or maybe it’s too much of a downer. Maybe it’s too redundant (which is a tragedy unto itself!).

My challenge to you this year is to do something.

Why? Because: These. Children. Are. Dying.

Amazing Donna can’t do this alone. I can’t do this alone. The moms and dads praying over their children cannot make the cure appear alone.

If you do anything this year—anything—can you PLEASE help these kids?

Need some ideas? Here are some specific ways you can help us this year.

1. Offer to help tie blankets for Amazing Donna.

2. Offer to wrangle toys and giftcards for Easter Bunny/Eggbert or Frosty/Elf Rita.

3. Offer to volunteer to help with the Twilight Walk in September.

4. Offer to be on our board.

5. Offer to send emails for the foundation to reach new sponsors.

6. Offer the Kyrie Foundation to your business as a beneficiary of a corporate fundraising event.

7. Offer to organize a fundraising event.

8. Offer to be a Facebook megaphone for the foundation’s posts.

9. Offer to hold a little fundraiser to help offset the costs of Amazing Donna’s blankets.

10. Offer to organize a Twilight Walk team and talk it up this summer.

There are a million different ways we spend our time. I’m just hoping you can help encourage your friends to swap an hour of reality TV for an hour of helping send emails, pick up donations and raise the voices of these kids. Here's to a loud 2014!!!!!

The Day The Angels Came

The Day the Angels Came
a grandpa's prayer and poem for Kyrie Dawn

Wednesday, April 4, the day we heard of the explosive growth of the tumors

Alas! O, Lord what is it that I hear?
Is it Your angels coming for our Kyrie Dawn?
O, please Lord, keep them at bay--
If just for one more day.

Thursday, April 5, Holy Thursday

O, Lord, what is this I hear?
Is it that You need another little angel to be near?
O, please Lord, please Lord, don't take our Kyrie dear.
Could You please keep Your angels away,
and we could have her just one more day?

Friday, April 6, Good Friday

O, precious, sweet Jesus, is this the day?
No, no, dear Lord, not today--
This is Your day that You died to save.
Again, please Dear God, let us be selfish
and keep sweet Kyrie another day.

Saturday, April 7, Holy Saturday Easter Vigil

Thank you dear God in heaven
for yet another precious day--
For we all know things will be done your way.
Little Kyrie Dawn is fighting so very hard--
Yesterday she three her ball three times
till her tiny arm got tired.

Angel of God, my guardian dear,
To whom God's love entrusts her here,
Ever this day be at her side
To light, to guard, to rule to guide. Amen.

Sunday, April 8, Easter Sunday

Dear God in Heaven, Your angels came last night,
As we all knew that someday they might.
They came around the hour of seven
to take our precious one to her
special place in heaven.
Sweet Jesus, we know that you, too, love the little ones,
so to You we give You our little Kyrie Dawn--
And in the end, it is always Your will that will be done.

Amen.

Love,
Papa

originally published April 7, 2007

Thankful Thursday

It’s been six years.

It’s. Been. Six. Years.

Six years and sometimes it feels like six days.

I’ve been thinking a lot about the adage, “time heals all wounds.” I imagine the sharp pointed hour and minute hands turning into surgeon’s needles, stitching up a broken heart, like Julia Child would sew up a stuffed duck. The punctures afflict as much as the wound, yanking at the gaping muscle. Even time itself can scratch at the injury, a reminder that we are helpless against the distance the time put between us and premature loss.

The operative here? Healing. Some wounds heal quietly, discreetly. Some wounds heal by cells feverishly working to produce a knotted, gnarly, protruding scar, a scar whose tissue must be broken again and again. Not gushing blood anymore, but deeply aching, awful-looking, knotted to the touch and often hidden under a sweater.

During the past six years, I’ve been whispering to myself, “work it for good.” And that’s what the Kyrie Foundation is all about. It’s a group of very ordinary humans working to bring about a miracle. I’ve often felt small in this work … that is until someone offers to lift with me. And then I often hear a voice say, “that’s the miracle.”

Over the years, I’ve watched what and listened to that which the general public gives its time and attention. Celebrity gossip, wasteful organizations, internet memes—any number of meaningless endeavors. I often think of Diane Traynor at the PBTF telling us that is easier to get people to care about stray animals than it is to get them to care about cancer eating children’s brains. I have found this statement to be true.

So in light of all of this, it is quite amazing that this group of supporters has raised nearly a quarter million dollars in the last six years. It’s quite amazing to consider the hospital visits and the handmade blankets to sick children. And the event sponsors, those who come to events, those who work the events, those who share an event. And the ones who come up with ideas to help, the ones who send the emails and stay up late to make things happen.

It’s supremely difficult to flip over the pain to see what's underneath. That’s probably because it takes the strength of more than one person. Thank you to each and every one of you who have made such a real and tangible difference in this fight.

What are you thankful for today?

Thankful Thursday

Today I'm thankful for hibernation. That's what the blog has been doing the last several months and big events take precedence. Down time encourages focus and focus definitely helps restore planning skills. Here's to a beautifully focused 2013!

What are you thankful for today?