I will never forget the first picture I saw of you.
You were tiny like a pixie and you radiated a charisma and love that instantly drew the viewer in – and I felt like I wanted to know you and your strength. And then I marveled that I, a full-grown adult, would have that response to a two-year-old child.
But so you were and will always be – the one who drew people in and changed lives with nothing more than the sunshine of your presence.
Right now, I can’t pass anything in any store with emojis and not think of you.
I want to scream and say it’s not fair and that you should have been eight on this, your birthday, and not two weeks gone already.
But this I know beyond a shadow of doubt:
You did more in eight that many will do in eighty.
You became braver than most will be in a lifetime of trial.
You found more joy simply because you wanted it more.
You spread more love because you knew the truth of it.
So, as much as I want to scream against the seeming unfairness of a world you no longer inhabit, I would not have you back in the brokenness for a second, dear girl, for I know you are free now and forever.
Love you, care about you, and will never, ever forget you.
Give us a minute to change the world with the story of your legacy and then we’ll see you in a little while, beautiful Mia.
“I’ll see you in a little while It won’t be too long now We’ll see it on the other side The wait was only the blink of an eye So I’m not gonna say goodbye ‘Cause I’ll see you in a little while.”
Dear ones, hello again… It’s been a long season of silence and I have much to catch you up on, but today, for now, I feel compelled to share these thoughts that came together in this one picture.
We, the mamas, first joined together because cancer threatened to tear us apart, and so we became stronger as a unit than an individual – bound by empathy, understanding, and an outrageous number of texts every day.
We met last night across miles and life because cancer did it’s best to wreak havoc and it still lost out to love in the end.
[Take that, you wicked, despicable illness – there will be no more pain for her …EVER.]
We are torn, we are broken, we grieve and will do so until we stop breathing, but we are also strong, filled with joy, and connected in ways we never would be if not for our pain.
As we sat at the table and processed life around a giant box of tissues (because we are nothing if not prepared at all times), I heard the couple at the table next to ours worry for their adorable infant son lying in the carrier next to them – for there was a baby playgroup with no openings for their sweet boy. And here they sat, next to us… ha.
I do not seek to trivialize worry, but how I longed to get up and go over to them. So I will tell you what I would have said to them…
Stop. Just stop what you’re doing right now and breathe deep.
Of all the things that will weigh on you in your life, only a small, grasped, handful are truly important.
And I know life feels nicest when we control and compare and excel, but it’s a dirty, rotten lie because the best and most joyous moments are often the unexpected, the crazy, the totally out-of-our-hands insanity that eventually weaves its way into something beautiful.
So just accept what you’re given as the gift it is and will be.
Trust that God has a plan for the things that you cannot see or understand.
And learn to cherish the journey and those you meet along the way, because it and they will anchor you in ways you’ve never never dreamed.
Moment by moment.
[picture: Crazy Mama Cancer Warriors and Sisters of the Heart – Meghan, Lisa, Ellie, Sue – or, as you might know them better: Maddie’s mom, Mia’s mom, Chase’s mom, and Matthew’s mom]
You were our surprise baby with your surprise personality and a most surprising life ahead of you that we could not have imagined if we’d tried.
We would apologize for our lack of expectation, but somehow the silly, crooked grin every time you perform the unexpected makes us wonder if you sort of just adore shocking us all.
Like living when they thought you would not…
Like walking when they thought you would not…
Like talking when they thought you would not…
Like a dozen other things that started as “NOT”, but you said “WATCH ME”.
You will always defy expectations, our sweet boy.
And somehow it’s only fitting that your cancer diagnosis includes the word “atypical” – because that’s exactly what you are and we love you for it.
Five years ago this morning, I doubt very much that five months were expected, let alone five years, but of course, you showed them and you continue to show us.
You will never have the easy life, my darling Chase, but you will have the precious life, for sure and always.
Whatever may pass and whatever lies before you…keep singing when the evening comes.
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 AndersonChase hands out Cliff bars with Julie, a member of our Lurie staff familyLurie 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 GouldSelfie 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 WoodLurie’s Aaron Conn with all the patients and siblingsMore driving with KerryChase 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 FoundationRobbie speaking his heart
Quietly, powerfully, people are doing incredible things.
The outcome could have been so much worse and for that, we praise. However, it was a shadow day, a “cancer” day, a reminder that we live in and with something that can threaten whenever it wants. It was a day for remembered dependence on God in ways that summer pool days don’t always impress upon me.
At the end of it all, we were all six under the same roof with no hospitals or sirens and we slept – truly slept – and for that I’m thankful.
At this moment in time, here’s all I know for sure: there’s a mercy that’s new every morning and a proven refuge in times of trouble.
Yesterday was a day when it was easier for me to throw up words onto social media sites, but I’ve copied them here today. May they encourage you to wait on Him, trust in Him, and see your wait as a beautiful part of the journey.
Moment by moment.
Those who live in the shelter of the Most High will find rest in the shadow of the Almighty. This I declare about the Lord: He alone is my refuge, my place of safety; he is my God, and I trust him.” Psalm 91:1-2 (NLT)
10:15 AM —
In the first hour of this morning’s summer camp, I got a call from a friend at church indicating that Chase had been brought in complaining of a headache, right eye pain, and lack of feeling in his right leg – even some “dragging” of the leg.
[cue the parent panic…especially as his tumor presented on his left side]
By the time I got to him, he could walk, he’d never stopped talking, and he showed no signs of seizing, but he was so tired that he spoke hardly at all (for those who know Chase, you know this is out of the ordinary) and slept for a few hours following my bringing him home.
He’s now more “himself”, but keeps resting and sleeping – saying his head hurts and his leg feels “rusty” even though it works.
In times like this, it feels impossible not to panic, but we are trying to live in grace in the moment.
Right now, for me (Chase’s mom), that looks like this: setting a timer for 30 minutes and only checking my email when the alarm sounds – to avoid frantically opening the mail app on my phone every 20 seconds in hopes of hearing from Chase’s doctors.
It could be a virus, it could be his growth hormones, it could be nothing, it could be something… I don’t know and part of me doesn’t want to share this, but I’m writing it out because I believe I’m not the only one who is having to actively pursue calm and joy in the middle of a day I didn’t expect.
Peace is not coming naturally like breathing, so, I am CHOOSING it.
Choosing peace.
Choosing hope.
Moment by moment.
7:30 PM —
You all are so awesome for walking this journey with us.
I just heard from Chase’s doctors… apparently it could be one of a few things (no easy road for our boy), but it was most likely either a seizure of some kind, or even more likely, some sort of migraine episode…because, apparently, kids like Chase start getting more/frequent/painful migraines.
Oh, the side effects of breathing…
Only time will tell what really happened today.
If this is once-and-done, it was probably a migraine, but we need to watch ever so closely and at the first sign of a repeat performance – call. Don’t pass GO, don’t collect $200… CALL.
So, the weird day is done… And the weird life continues.
I want to be free of the wait for “the next thing”, and yet I choose to believe the wait is as purposeful as every other moment.
Tomorrow is a new day with new mercies.
Taking it moment by moment.
Thank you for walking this with us!
Chase still has a headache, but perked up in order to help with his evening shot.
