Eight Years

Ever since 2012, July 31st has been the hardest of lovely days to us because it ripped us apart and then stands to remind us every year that we are all still breathing. Because eight years ago, on July 31st, an emergency room doctor was walking into Chase’s room with tears in his eyes, speaking the words over us that changed everything:

“There’s a large mass.”

Tuesday, July 31, 2012

A few days before this strange anniversary day, Darcy and I were walking, trying to carve out a minute to ourselves, talking through the date, the memories, and how it still – even these eight years later – carves us open. [She, this sister girl child that we -perhaps foolishly in our own fear- told to stay in her bed in the dark, is a fourteen year old high school freshman and the sight of flashing lights outside her bedroom window as she curled powerless and scared still hold a vivid place in her mind.] But as Darcy and I walked, talked and processed again, Margaret pulled alongside us. She literally pulled alongside us in her car as we walked and she drove by and as we talked, friend Margaret, a wonderfully gifted photographer, smiled and said lovingly:

“We should take pictures. Eight years is a big deal and we should make it special this way.”

And so, a day later, we gathered at the local park, just Margaret, the kids, and me, and she walked them through a few minutes of life, with her words giving them grace and her camera catching them as they moved. 
There were no showers, no hair cuts, no scrubbing up and making beautiful. Chase insisted it be “Cubs theme” and we just grabbed (hopefully clean) clothes out of drawers and went with it. 

And suddenly, the shadow of late July lifted for a moment. We put aside the awful memories we experienced those eight years ago, and lived in the joy that is having eight whole years when you didn’t think you’d have any. 
The perspective changed through the lens of a camera and a moment of stolen time.

We see the heartbreak, yes. Always.
But we choose joy

And sometimes it takes someone pulling alongside you to catch the light a certain way and hand it to you when you need it most. 

So here’s to eight years.
I will never stop being both horrified and amazed at this life of grace we’ve been given.

“Whatever may pass and whatever lies before me… let me be singing when the evening comes.”

10,000 Reasons (Bless The Lord), Matt Redman

Thank you for walking alongside us, dear ones. 
Moment by moment. 

[Please enjoy these beautiful, candid gifts that Margaret Henry Photography gave us this week ]

Of Golf Carts, Big Smiles, And Being Amazing

These days in the news, so there’s so much heartbreak – so much about people who use their position of influence for evil instead of good.

I can’t change the whole, but I can give you a peak into that sad news not being the only news. Yeah, maybe it’s the sad kind that sells, but quietly, powerfully, all over the world, amazing people are silently doing incredible things.

So, this weekend, let me give you a small peak into something wonderful. And I hope it will bless you as it has blessed us.

Many hospital fundraisers are well publicized, but there are some that are quiet too. This last week, we spent 24 hours with the quiet and the powerful, and dear ones, how I wish you could see what I saw…

The Lurie patient families gathering with each other and foundation staff; hugging and talking like long lost friends — because trials knit strangers together by their souls even when they’ve never met.

Lurie families and staff gather with actor, Anthony Anderson

Chase hands out Cliff bars with Julie, a member of our Lurie staff family

Lurie patients and siblings in the photo booth

The three little neuro boys – who beat their odds and defied their statistics – running and tagging and giggling through a crowded ballroom full of VIPs.

The beautiful girl – thirteen long years in a wheelchair – who pushed up onto her braces, braced her courage and body against the podium, and told her story, shouting “Isn’t that amazing?” to a standing ovation.

Ellie and Chase

The leaders of companies, the heads of foundations, professional athletes and actors – one and all treating small children with big disabilities as if the children were the heroes whose autographs were sought and whose selfies were precious.

Selfie with Robbie Gould

Selfie with Kevin Butler

The men and women who hand beautiful, expensive golf clubs without a care into the hands of small children and teaching them how to tee up and tee off.

The looks on the players faces when asked how the game is going – the shrugs and smiles and “That’s not why we’re here today. Today is for the kids.”

Chase met Mr. Butler last year and couldn’t wait to see him again this year!

The absolutely huge center for a pro football team crossing clubs like swords and falling “dead” to the ground under Chase’s cry of “surrender or die!” – all because he’s a dad too and he gets that kids are kids no matter what.

The players who paused their game (time and again) to sign their golf balls and give the kids rides in their golf carts.

Chase gets driving lessons from former Cubs pitcher, Kerry Wood

Lurie’s Aaron Conn with all the patients and siblings

More driving with Kerry

Chase and Darcy practice driving with former Chicago Bears player, Kevin Butler

The mothers and fathers who gave up their own families in the middle of crazy, busy lives to fly to Chicago on behalf of a children’s hospital.

Chase and Charlie with Anthony Anderson

The winners who took their signed football prizes in hand and turning, bowed over bald and broken children and placed the prizes in the kids’ hands instead.

Chase with Mike DeMatteo, giver of his signed football

The silent money that bought four pieces of children’s art, framed like the greats, for thousands of dollars.

The dozens holding a sign for a boy who wasn’t there because he was on the table for his ninth brain surgery – his second in two weeks.

Kerry Wood and Darcy support Team Matthew

And dear ones, so much more. So much more! I have as many small story moments treasured in my heart as Chase has fist bumps, high fives, and “Hey, do you know you’re awesome?” questions.

Chase and Robbie take a minute to perfect their lounging skills

The few pictures I took have names to them so you can see and know what and who you’re seeing, but dear ones, there are no names in the stories because they, the famous, the amazing; they wouldn’t want you to know. That wasn’t why they gathered. So, you don’t need to know all the names behind the stories, but I do want you to see a bit of their hearts.

And these hearts? Well, they raised well over $800,000 for the hospital.

Robbie Gould with the Lurie kids and members of the Ace Foundation

Robbie speaking his heart

Quietly, powerfully, people are doing incredible things.

~MbM~