Of Transports, Concerts, and Remembering Friends…

Aidan, Chase, and Craig

Aidan, Chase, and Craig

This is Craig.

The last time Chase was in Craig’s care, Chase had a fever of 104 and his blood pressure wouldn’t stabilize.

I rode in the cab of the Lurie transport with the driver while Craig and the rest of the team sat and cared for Chase in the back.  Want a crazy experience?  Buckle into a transport moving “sirens and lights” as fast as safely possible down the side of one of the city’s biggest roads at the height of rush hour traffic.  It has the feel of racing time itself.

That day, the last moment we saw Craig was when he delivered Chase to his hospital room, and on hearing of another child who needed to be “brought home”, he looked out at the October lake whipped in the wind and said “I wonder if they’ll let us fly…let’s go.”

Craig is one of the many incredible, every-day heroes of the hospital and we had the great pleasure of seeing him this last weekend at a Christmas concert.  No transports, no medical supplies, no nothing of sickness… Just holiday smiles. And Chase remembered him!  A blessed moment.

-MbM-

Of Magic Trains, Candy Lands, And Those Who Bravely Run…

Every day, they run the gauntlet, the lights, the odds… They run into burning buildings, run to the bodies in pain, run to the hospitals.  These people who fight fires and treat sick… they are the brave and the heroes and the servants who lay it all out there so that we can be safe.  

And now, imagine if you can, all those heroes, in their uniforms with the bright yellow stripes and the heavy hats, in their shiny dress uniforms with the gleaming badges, in the dark blue covering bullet vests with holstered guns… Imagine them, lining the sides of a walkway, stretched as far as you can can see, down on one knee, clapping and cheering for… Chase.  …for the bald boy walking next to Chase.  …for the beautiful girl who’s cerebral palsy keeps her bound to a wheel chair.  …for these and so many more, the heroes knelt in salute.  Welcome to our Saturday…

Early in the Fall and life at our new little house, I received a call from Chase’s hospital asking if he’d like to participate in this special Christmas celebration: Operation North Pole.  Chase loves The Polar Express.  Another dream wish… I might have cried.  …yet another experience I wish you all could have had with us!

Being ushered in to parking by firemen in uniform and walking forward to parked police cars, trucks, and ambulances – all available for the children to enjoy.

The police officer who’s voice spoke love as he explained that he volunteered this year because his nephew, struggling with a life-threatening illness, had been a recipient last year.

Bill and Laura, our breakfast table helpers

Bill and Laura, our breakfast table helpers

Watching the strong, brave firemen humbly circle breakfast tables and wait on families with gentle deference.

Having Ronald McDonald circle past and ask Chase (into a mic) what he wanted for Christmas and hearing: “A dog”.  A what?!

Fireman Bill and Chase

Fireman Bill and Chase

Having a volunteer announce that there was a little boy with them today that had just turned five and watching Bill, the well-over-six-foot fireman hoist Chase high onto his shoulders while the room cheered in a celebration of life.

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The line of 8 shiny, new school buses to take us to the train station.

The sight of firemen helping secure wheelchairs into buses and make sure all were comfortable and safe.

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Pulling out of the convention center in a caravan of buses and seeing police cars and fire trucks alongside, in front, and behind us…like a presidential motorcade.

Turning the corner and out the bus window, seeing police cars blocking all traffic in the intersection and waiving to us on the bus – like we were ever so important.

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Fighting tears to experience going through red lights with a police escort at a time we weren’t beating time itself to the hospital.

Pulling into the train station to cheering crowds and ever so many more fire trucks and emergency vehicles.

Watching for the train...

Watching for the train…

Lining the platform and cheering as the “North Pole Express” pulled in and towered over us with a whoosh and hiss.

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Trying to see it all through my Karsten’s eyes – eyes that have never been on a train before because most of his short three years have been his older brother’s treatment.

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The train cars filling with musicians, clowns and puppies, Christmas helpers and games, snacks and laughter as we sped along.

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The compassionate eyes of the police officer as he knelt in his uniform, crouched by the bench where my three year old sat, listening as if he had all the time in the world and then placed smile-face stickers into Karsten’s chubby, sticky hands.

Uttering the only thing crazier than “We don’t wrestle in front of Ryan Seacrest!” when I had to say the words: “Son! We never, ever, ever tackle police officers!  Ever!”  …and seeing the kind and compassionate pat on the head of the smiling servant who understood small boys and their energy.

Because reindeer noses are for...?

Because reindeer noses are for…?

Hearing that the conductor was coming and watching a Hanks-esque man with pocket watch and lantern pull golden tickets from his pocket and punch stars into messages in front of tiny wide eyes.

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Looking down at my golden ticket and seeing the word “HOPE” star-punched special.

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Reaching the farthest point and watching more firemen and children board the train with bags of goodies and snacks for all.

Slowing at every station and town on the way back down the line and seeing people lining the platform and cheering for us as the engineer blew “Jingle Bells” on the engine horn and the children’s signs said: “North Pole – this way!”

Seeing that the children weren’t alone as they cheered in the stations and at every station and crossing, firemen and fire trucks lined up, holding signs and cheering.  And how I wish that I could share with you the picture of a ladder truck with 6 firemen standing uniformed atop it, waving to the children in the train windows and holding signs that said: “You’re going to the North Pole!

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Pulling back into the station and re-meeting our shiny buses and brave escorts for the ride back and pulling near to the building to see a Santa Clause waving the buses in and hear the gasps of children on the bus as they spied the red suit.

Going up the long escalator into the gauntlet line of cheering heroes on their knees for my brave baby boy and his brave siblings.  Seeing the kindness in their eyes as they “high five’d” and clapped and called them all by name.

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Walking through a sea of ice-blue tee shirted volunteers who cheered us on as we walked into the room they’d given time and endless effort to create.

Giving Olaf warm hugs

Giving Olaf warm hugs

Watching Chase throw his head back in joyful awe on the dance floor as an ice-costumed, real-life Elsa sang “Let It Go” and snow started falling from the ceiling.

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Walking all four children through a life-size candy land and hearing a fireman volunteer tell me that if there was anything I needed to let him know – and to make sure the kids got enough candy because there had been thousands and thousands of pounds donated for kids like my babies.

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The look on Karsten’s face as he turned from the dream of stuffing a bag full of every candy imaginable to see a miniature pony being led over to him.

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Darcy’s eyes widen when Kelly, the darling volunteer who stayed by our side all day, told her that there was a beauty salon for little girls in the “North Pole”.

The sight of all my children dancing and doing crazy things we only ever dream about or see in Christmas movies.

The arm of the fire chief on my shoulder as his voice softened and he said, “It’s our great pleasure to do this.

Having escorts from the building – carrying all our bags and seeing to our needs – and getting to the garage only to discover that the giving wasn’t over and they had more presents for all the kids.  An above and beyond kindness.

Saying goodbye to tall, brave Bill – the fireman who’d stayed by us since breakfast – as he put his hand on Chase’s head and wished him good health and we drove away so special and blessed.

And the heroes, they waved as we passed out of their sight.  Every day they run the gauntlet and the lights and the odds…and on this Saturday, as they’ve done four years prior and plan to do for decades still, they kneel to serve the ones like Chase and name them among their own with highest honor.

The strong humble and serve.

We are blessed.

Moment by moment.

This post is dedicated to all the public servants and volunteers who worked so hard to make Operation North Pole a breath-taking reality for those like Chase.  Your bravery is evident every day and your beautiful servant hearts for our families will never be forgotten.  Thank you.

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12.12.14

“Mom? Are you awake?”  The quiet voice came into the dark room from the silhouette of a fuzzy head in the hall light.  “Mom?  It’s me.  I just came to tell you it’s my birthday.  I’m five today and I’m going to open presents and…and…what am I going to do today?”

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Some days, he might need to be reminded of what you do on a birthday as the scars present their challenges, but he didn’t need help remembering that he’s here and he’s five.  And neither do I.

December 12, 2012

December 12, 2012

As I watch him open presents and I frost his cake, I find myself wanting to savor every second lest I never have graduations, weddings, and all those things that come with living long years.

Yet, as the fuzzy head tucked under my chin  and the downy quilt early in the dark morning hours, I could hear his smile in the shadows and that colors the canvas of the day.  The smile sounds spoke to my heart again: Chase chooses joy.  Always joy.

December 12, 2013

December 12, 2013

“Mom?” His voice across the breakfast table; “why are you crying, Mom?  I didn’t die of the cancer.  I’m five!”  And I wonder in my heart how such an old soul can be only five years young.  Always joy.

“Let’s just start this fight, and then we’ll get him through radiation, and then we’ll hopefully get him to age three, and then four, and then five…”  The doctor’s words always remind on this twelfth day of the last month.  Five.  The highest number listed in that year-by-year hope around the first conference table and diagnosis.

Today, my, precious, stubborn, tenacious, beat-the-odds, stare-it-down, never-say-die, don’t-mess, you-and-what-army Chase turns five with great joy.

We never thought we’d be here ever… and now we’re here.

God is good.

~MbM~

December 12, 2014

December 12, 2014

 

 

Today

Today, I walked into a huge medical facility bay and stared down a gigantic white truck structure.  The MRI.   

Today, I watched my loving husband carry my darling son up into the structure as he spoke calmly and quietly, and Chase, red-faced and teary, clung to him and cried that he couldn’t…just couldn’t…do this right now.

Today, I stood in the bay as only one parent could go inside with Chase, and my heart ripped just a tiny bit at the sound of his screams and then it was silent but for the pounding of the machine.  And I would learn later that though he screamed in the room, the minute the scan started, he became peaceful and still and stayed still for the whole test.

Today, as I held my breath and prayed for Chase in the sound of the machine, a man came up and introduced himself – the husband of a beloved proton radiation nurse who had cared for Chase nearly two years prior – what a small, beautiful world it is some days.

Today, I watched Chun, the camera man (because yes, we have a camera crew here with us now – so much more on that some day soon) peer around the corner of the machine and flash me the “thumbs up” – Chase was okay and he was done.  He did it!

Today, Chase descended out of the gigantic white structure, held his arms out to me and shouted “Mom!  You came back to me!  I did it and I was SO brave!!”

Today, we – Bob, Chase, the camera crew, a friend from the hospital, and me – we all waited in quiet anticipation to talk to the neurosurgeon.

Today, we all stood in the small exam room to hear that the growths, though changed and grown a little more, are considered stable.

Today, we talked of movies, and keeping up with small children and their energy as Chase went through the paces of touching his nose and myriad of other normal things that may not always come easily to him and Dr. Alden knows this and watches out for him.

Today, we heard that we get to wait to look again until January and enjoy our holidays and that we don’t need to think about biopsies or treatments right now.

Today, we heard that January is most certainly a necessity and that at least one of the growing places on the MRI is still a concern.

Today, we talked about nobody having all the answers and how frustrating it is when we ask and the doctors long to reassure with decades of concrete research and can’t.

Today, we were reminded that if we see any, absolutely any changes in Chase, we need to report them immediately.

Today, we chafed against the wait again and found our spirits wanting.

Today, we were given the day, and we’ll take it…

…moment by moment.

“We were made to run through fields of forever, singing songs to our Savior and King.
So let us remember this life we’re living is just the beginning of this glorious unfolding.
We will watch and see and we will be amazed if we just keep on believing the story is so far from over and hold on to every promise God has made to us…
We’ll see the glorious unfolding.”

Steven Curtis Chapman

Waiting for the neurosurgeon and mildly questioning Dad's ability to assemble a Transformer...

Waiting for the neurosurgeon and mildly questioning Dad’s ability to assemble a Transformer…

Of Looking Back, Looking Forward, and Very Loud Noises

“I’m afraid, Mom.  It’s going to be really loud, isn’t it?”  Chase, cuddled on the couch this chill December afternoon, voices his worries… 

Three quarters of a century ago today, terrible things happened half a world away and boats sank and people died and the country went to war again.  December 7.

Six years ago, late in the evening, as the sounds of the Christmas music barely faded in the halls of the church, I rushed to the hospital and Aidan was born and there was joy and a new baby son.  December 7.

And now, we sit on the couch under the shadow of the almost-winter clouds and there’s another shadow too.  Tomorrow comes the MRI and we sit and talk because today, on December 7 – day of all sorts of remembrance – we sit and look ahead and not back because tomorrow they’ll peer inside his white head again and see if there’s been any change in six weeks.

It’s poetic and strange how life weaves the beauty and pain in every memory of each moment and they’re all mixed together in a life symphony that requires unending grace.

Chase is scared and rightfully so.  Tomorrow will mark his first “awake” MRI in two years.  It’ll be mercifully short, but for 5-10 minutes, he will have to face one of his worst fears.  The noise.  It will surround him and he knows it and he’s frightened.  He can’t escape it and this child who is never still must lay perfectly quiet in his terror for 5-10 minutes or an eternity – whichever comes first – yet another time in his little cancer life when the only way out is through.  And how our hearts wish to cover him from this, but we cannot.   So, through it, he goes.  And he says “Jesus will be with me…and Daddy too.

As you think of Chase tonight and tomorrow, will you please pray for him?  Pray for peace to surround him as he goes into this very hard place and does this very hard thing?  …and then, pray for us as our challenge comes moments after the MRI when we speak and decide over the pictures with his neurosurgeon.

Moment by moment…

“You keep him in perfect peace whose mind is stayed on you, because he trusts in you.” Isaiah 26:3

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Giving Thanks

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Last year and this year too, we take a moment to reflect…

This Wednesday in 2012, Chase was deep into radiation in addition to his chemo therapy and was staying in the hospital. He was weak and his counts were very low, but he was stable and so, late in the afternoon of this Wednesday, I held his weak and white body by the window and stared out at the lake, shielding his face – his eyelids covered in scabs from where daily anesthesia tape had ripped the tender skin – and prayed that they would let us go home for Thanksgiving.  And then Dr. Goldman entered the room (as only he can enter a room) and told us to go.  And we went.

Two years later, we are thankful for so many things and our darling Chase is still with us to celebrate.

Giving thanks… Moment by moment.

“My heart is filled with thankfulness
To Him who walks beside;
Who floods my weaknesses with strength
And causes fears to fly;
Whose ev’ry promise is enough
For ev’ry step I take,
Sustaining me with arms of love
And crowning me with grace.” [Getty, Townend]

Of Giant Trees, Giant Buttons, and Not Wrestling…

Most of you know about Chase’s wonderful wish: his “park” in the back yard.  However, our connection to Make A Wish led to one other amazing thing…a thing we didn’t even know to wish for, but a thing that can only be described as an amazing dream.  Chase was invited to come to the Macy’s on State Street, to the famed Walnut Room, and help light the three-story tree to kick off the holiday season in the store and start Macy’s “Believe” campaign.  We would find out less than 24 hours before this occurred that he would be alongside Ryan Seacrest and American Idol winner Lee Dewyze.  

How I wish that each of you could have been there with us and experienced this day! 

The great tree

The great tree

Being ushered past long lines to our complimentary tables (I mean, like that isn’t a dream in and of itself!)…

Meeting staff, servers, people in marketing, store managers, corporate leaders: all so passionate about what they do in the world of Macy’s and how Macy’s affects the world…

Writing letters to Santa and mailing them with Lee Dewyze…

Right before the 12 high-fives...

Right before the 12 high-fives… [credit: Ryan Blackburn, Make A Wish]

Watching Lee be super cool as Chase wanted to give him twelve high-fives one after the other… (That’s not an exaggeration.  We counted.)

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Having the Macy’s photographer take pictures of our family in front of the great tree and Karsten (in an elf’s hat, no less) sulking on the floor and refusing to smile… 

How we roll when it comes to family pictures

How we roll when it comes to family pictures

Being told that Ryan Seacrest wanted to meet our family before the tree-lighting ceremony…

Being ushered into a media-filled room waiting to hear from Ryan Seacrest and watching him hunker down and focus on Chase…

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[photo credit: Ryan Blackburn, Make A Wish]

Hearing Chase ask Ryan (there to launch a very classy line of menswear) if he liked his dirty, beat-up, favorite Spider-Man shoes…and hearing Ryan answer “Yes, I do!”…

Having to utter the phrase “Boys, remember that time when I told you that we don’t wrestle in front of Ryan Seacrest?”…

"Mom, I just ate Olaf's head!"

“Mom, I just ate Olaf’s head!”

Our amazing server, Stephanie, who put up with our crazy table full of small children and saw to our every need…

Aidan falling off his dining chair…(more than once

The beautiful store manager, Kim, who spoke of children like Chase with tears in her eyes…

Seeing people stacked several deep, lining the balconies that look down into the Walnut Room…and the bank of cameras and media personnel and very bright lights down in front…waiting

Chase's view of the room

Chase’s view of the room

Hearing the introductions from stage: “…Ryan Seacrest, American Idol winner, Lee Dewyze, and our special celebrity… Chase Ewoldt!”…and knowing they honored his fight with their words…

Listening to Lee dedicate his song to children like Chase and then sing the words: “I can’t stand up on my own don’t need to stand alone lift me up so I can see the light…Don’t be afraid…”…

Seeing our other children being invited on stage and knowing that their own often difficult lives as the siblings of a fighter were being honored…

This IS my happy face

This IS my happy face

Hearing Bob and myself being invited as well and not accepting as our fourth child, aka: “the grumpy elf”, refused to go anywhere near a stage…  

Watching Ryan call “Five… Four… Three… Two…” and hearing the crowd chant the count, getting louder and louder with him…

Watching my children, surrounded by special people and so much love, start to depress the giant novelty tree-lighting button right around “Two…”…because it was too hard to wait…

Hearing Ryan’s voice call “One!” as the room transformed and the light shot up to the ceiling, three stories above us…

The cheering of the crowd…

Aidan running over to me with the guitar pick from Lee’s performance and his voice saying “Mom! Look what I got from my new friend!”…

Watching Ryan lift Chase to stand on the button (the size of a small column) and Chase’s arms going into the air, triumphant, as he watched the lights and heard the sounds… He’d pushed the button and he knew it.  And the ceiling said “Believe”.

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[photo credit: Alyssa Horrall, Macy's]

A truly precious day.

Moment by moment.

~Our family’s heartfelt thanks to Dana Kuhman Whitty, Ryan Blackburn and every beautiful soul at Make A Wish, Alyssa Horrall, Kim Groth, Martine Reardon and the entire Macy’s team who made us feel like cherished family, the beautiful Starr Royal-Burrell of Build-A-Bear who invited our children to come build bears (or dogs, or Olaf the snowman), the incomparable Ryan Seacrest and the Ryan Seacrest Foundation, and the wonderfully talented Lee Dewyze and his high-five skills.~   

Note: We eagerly await (and look forward to sharing with you!) the official photographs from Macy’s at a later date…please, stay tuned.

The Caregiver’s Perspective

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Speaking as the primary caregiver of a brain tumor patient who is technically classified as “terminally ill“, my life has more sad moments and nightmare scenarios than you can imagine.  …And I wouldn’t trade any of it for all of the moments I have with Chase – even on his worst days.  Life is unspeakably precious and you cannot imagine beforehand the beauty and refining to be found in painful life and the living of it, can you? 

My life has greater purpose and meaning because I’m caregiver to a terminally ill patient. I grow and am strengthened when I suffer with him and learn to love the way he’s changed. I literally cannot imagine having the decision to walk this road with Chase taken from me to keep me from pain and bad memories. At the moment of diagnosis, it’s already too late.

The redemption comes in walking the road…the whole road.

Moment by moment.

“So we do not lose heart. Though our outer self is wasting away, our inner self is being renewed day by day. For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison, as we look not to the things that are seen but to the things that are unseen. For the things that are seen are transient, but the things that are unseen are eternal.” 2 Corinthians 4:16-18

Of Cheese, And Slides, And Knowing All Along

We took the scarf off and he saw for the first time...

We took the scarf off and he saw for the first time…

Wednesday

Chase crouched and fingered the mulch in the yard, “Mom, I know what my surprise is…  You’re going to put a park in the yard.  I know because parks have cheese like this.”  Sometimes when Chase can’t think of a word like “mulch”, he says words like “cheese”.  And some days, he’s just too smart for his own good.

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Saturday

The man said that some installations go quickly and others don’t.  Seven hours after the start, right before the sun went down, we walked Chase outside with one of my scarves tied around his eyes and revealed his special surprise… a huge play set with a fort.  A big smile crossed his face and he sighed “A park…”, and then, “Can I play on it?”

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Just like that.

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Because, why wouldn’t we put a park in the back yard for him?  He smiled as if he’d known all along.  And then he and his siblings explored every aspect until it was too dark to see…the swings, the tornado slide, the fort, the climbing wall, the place where the sand will be delivered next week…  Their giggles were contagious and the wonder in their eyes…the wonder that this was their own, forever, drew us in like warmth in a chill.

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So thankful for all our Make A Wish friends and helpers who put together this moment of joy for Chase and our whole family.

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Moment by moment.

Of Wishes, Possible Delays, and Giant Trucks…

Oh my word!  What a day…

I got a call from the freight company delivering the wish earlier today.  They said the wish was on a huge tractor trailer and that the driver most likely wouldn’t be able to make it down our narrow street.  They said that I’d receive a call to reschedule delivery on a different day when they could put it on a smaller truck.

Around 2:30 this afternoon, I heard the sound of a truck outside the house and peered out the window to see a MASSIVE semi parked in front of the house!  The driver got out of the cab and told me that when he’d read the shipping manifest and seen that this was for Make A Wish, he knew he had to try and get down our street.  Can you believe that?

Look at the size of this truck!  Can you see Aidan standing at the back?

Look at the size of this truck! Can you see Aidan standing at the back?

The wish was so large that he couldn’t use the regular unloading equipment and so he called someone else (who works for the corporate office of the freight company) to come help him and the two gentlemen made about 5 trips unloading all the supplies for the wish from the truck into our garage. 

I wasn’t kidding when I said that you meet amazing people!

Also, this kind of craziness and waiting is so much more fun than waiting for a delayed operating room… 

Installation is scheduled for tomorrow!

-MbM-

Stacy and Chris (the amazing driver) our angels from Old Dominion Freight Lines

Stacy and Chris (the amazing driver) our angels from Old Dominion Freight Lines