“…Now I Am A Little Like Chase.”

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12 months and 5 days...  That’s all the time between them; my first boy and his surprise brother.

Through the years they’ve been mortal enemies and best friends and sometimes both within a matter of seconds.  They played cars together and sword-fought across the whole house and back and they used to splash in the rain on the tiny condo porch and squeal in delight.

About 2 months before Chase was diagnosed

About 2 months before Chase was diagnosed

And one morning, while he lay in his bed, Aidan watched us surround his brother and carry him out.  He lay in the dark of the room as emergency lights reflected through the closed blinds – flashing red on the walls and ceiling – and he looked out into the dim hall and saw shadowy figures in navy and heard the click of a metal gurney carried across the threshold.  He watched his mother cradle his best friend brother with eyes closed and a mask over his face and he heard the words:“You need to stay in your bed, Grammie is here, I love you so much and we will see you soon, okay?”  ..and with that, the life of my first-born boy changed forever.

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Helping with blood draws in clinic

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Making Chase smile on hospital days

The sword-fighting and cars never stopped, but now it was only occasionally around the times his brother was out of the hospital.  And while he could go outside and run or swim with his sister; his brother, whose head was now ugly and puckered with stitches couldn’t be out in the sun or water with him.  And their play had to gentle around IV bags, careful as his ever energetic brother tired in minutes, and metered around blood draws and medicines…for which he’d stand by the couch and hold out his hand and say words like “Chase, it’s okay.  I’m here if you need me.  Here’s my hand… you can hold it if it makes you feel better.”

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Helping Chase move with the IV bag

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Cheering Chase on during radiation days

And when he had his own tonsil surgery the week after they opened his brother’s brain, he sat contentedly in recovery and made no sound at the needles or cords because “…Now I am a little like Chase.”

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This boy has grown up on the sound of his brother’s screams and the sight of his brother’s scars and blood.  And in some ways he’s 6 and in other ways he’s 60 because he knows more of the world and suffering than you should know when you’re little.

Learning to play around an IV bag

Learning to play around an IV bag

So, this week he told me that he’s growing out his hair to shave it for his brother.  He wants to be bald for a minute with his brother.  And when he had to write on the St. Baldrick’s website and say why he was going to shave his head, these were his words: “I’m shaving my head for my brother Chase because he’s my brother and I like him and because he’s my best friend and because he’s a very kind boy.”  And if I know my Aidan, he’ll sit in the chair, totally bald and calm because “…now I am a little like Chase.”

12 months and 5 days and sometimes there are no other words.

Moment by moment.

To go to Aidan’s St. Baldrick’s page, click here.

 

 

“BEFORE I die…” Documentary

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08 December 2014…

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.

Chase learns about the camera from Chun...

Chase learns about the camera from Chun…

25 February 2015…

I received the link to the first trailer this morning and it’s finally time to tell you a little bit more about this.  Chun, the camera man who so graciously let me know Chase was okay during his December MRI, was here with Richard Bakewell, the producer and visionary behind an upcoming documentary: “BEFORE I die…”.

Richard documenting Chase's first try behind the camera...

Richard documenting Chase’s first try behind the camera…

This piece is an incredible view into the world of pediatric cancer as children look to their legacy by putting together a “bucket list” and seek to give back in some way.

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To watch may be gut-wrenching, to say the least, but these children are beyond precious and their moments are being captured forever, and that’s priceless.

Richard and Chun will be joining us a few more times this year and we look forward to sharing with you as this unfolds.  Stay tuned…

-MbM-

“BEFORE I die…” teaser trailer:

For more on Richard Bakewell’s projects and “BEFORE I die…”, you can click here. 

It’s Only A Side Effect

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The pieces lie in our hands…

We’ve talked about this.  We are the lucky ones…the ones still breathing.

The pieces are broken and jagged, like a shattered vase, but…he lives.

Many are the times we’ve cried out for wisdom and wandered the farthest regions of our motives in search of the right and wrong in saving treatments that cause great damage.  And we’ve steeled our hearts that if our hope comes true – if, by some means, some day, better cures are found – they will have passed too late for Chase.  The seeds of damage were sewn when we opted to save his life.  We ask ourselves almost every day… are we ready for this?  …whatever this looks like?  …the fruit of our decisions?

Absolutely not.  By grace alone, we stand.

Would we go back?

 Absolutely not.  Ready or not; no regrets.  The pieces are jagged and some are ugly and sad, but we’ve steeled our hearts and have set to fixing the vessel and it never ceases to amaze us how much beauty there can be around the broken.

On Wednesday, we heard our very good news, but that was not the only appointment we had.  We also sat with another doctor.  One who monitors things like growth, organs and hormones.  Chase lay flat and still while she measured and he held his arms out like a bird while she measured more and he stayed patient as she checked everything and we talked family history back into the generations.

Even though his weight is in keeping with other children his age, it’s starting to show already: Chase’s height is having trouble keeping up.  His tiny black dot was still on the growth charts before our eyes, but just barely…like someone clinging to a precipice by their fingertips.  How much longer until it falls off completely?  Nobody knows.

The consultation came down to blood for now.  Tests and blood.  More decisions will come in the next year or two.  Decisions that bring with them risk of secondary cancer.  This is the cost of trying to grow up when your spine was radiated.

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Our hearts are heavy with these things some days, still, even in the heaviest of moments; no regrets.  We set to mending the pieces because it’s only a side effect and some day, Chase will be better than better.  He will be perfect.  In the meantime, we’ll use the pieces to reflect the light.

Moment by moment.

For now we see in a mirror dimly, but then face to face. Now I know in part; then I shall know fully, even as I have been fully known.  1 Corinthians 13:12
And he who was seated on the throne said, “Behold, I am making all things new.”  Revelation 21:5a
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Good

In pre-op with Mrs. Schneider

In pre-op with Mrs. Schneider

The doctor turned his head back to the computer screen on the desk and read out the official words from the final radiology report: “The MRI shows no evidence of new or progressive tumor.”

Let it sink in…  Good news.  The very best we could have hoped for!  These little growths, these that have so threatened for months now, these have showed themselves to almost surely be treatment effects.  What a strange cancer world we live in that where success is measured in not dying today and side effects can provoke a sigh of relief.  Oh, but what relief

In pre-op preparing for the scan: when the medicine works, it works quickly...one minute, up and playing, the next like this...

In pre-op preparing for the scan: when the medicine works, it works quickly…one minute, up and playing, the next like this…

And Chase?  He’s so funny… his hardest part was done yesterday when he woke up in post-op.  The needle was removed and he could eat and that was it.  And today, when we told him the news, he put his hands in his pockets, shrugged, and said “Oh. Good.” …as if he’d known all along.  This boy, he takes it as it comes.  And so will we.  Oh, and tonight, it comes good and great with no fresh cancer news, answered prayer, and an MRI that can wait for three whole months instead of six weeks.

Good news…  The very best we could have hoped for…

Moment by moment.

“This is the Lord‘s doing; it is marvelous in our eyes.  This is the day that the Lord has made; let us rejoice and be glad in it.” Psalm 118:23-24

Chase with Nurse Jo in post-op after his scan

Chase with Nurse Jo in post-op after his scan

Chase On His MRI [VIDEO]

The sun is only hinting pink when I feel another presence on the edge of the living room.  This is what he does, my early-rising boy… He wakes before it’s light, tip-toes out to wherever a parent can be found, and stands quietly, thumb in mouth, waiting for someone to see him and call him into the light.

Still rumpled and rosy from sleep, mismatched in his Lightning McQueen bottoms and a shirt that announces “I fight cancer. What’s your superpower?”, he jumps onto the couch and snuggles close.  His talk turns to the subject that has been plaguing him for about a week now: the upcoming MRI.

The questions come as they do every day; several times a day: …When is my MRI? Will there be ‘beeping’? Will I have a needle? Can I eat? Who will go with me? Will you come back to me?…  They come with heartbreaking regularity and the answers are always the same.  In a life that’s anything but predictable, he can at least rely on the same answers to these small questions that are so very big to him.

In a day, he’ll wait in pre-op for almost two hours after having gone nearly half a day without food or drink.  They’ll lull him and then hold a mask over his face while he lays on the threshold of the machine with no parents in sight to say “It’s okay, sweet boy.” And while he sleeps, they’ll put a needle in his arm to keep him hydrated and inject dyes and he’ll be in the machine for nearly two hours – the only blessing: he’ll be mercifully unconscious.

You hear from me on this subject early and often, and in the last part of the last year, it was often-er than not.  My words hardly change…we can’t, we must, we wonder, we shouldn’t, God is good.  Always.

So today, hear Chase.  He’s about 24 hours away from a big MRI and he’s scared.  He also wasn’t sold on the idea of a video until I promised him that he could hold his father’s tape measure.  This is what the early morning and late nights look like…the twisting mouth, the working to remember words, the thinking about mosquito bite scars on top of his skin rather than the potential of cancer growing under it.  He’s part boy, part wise far beyond his years, part broken by his treatment and tumor…and he’s all Chase.

Moment by moment.

*Note: His last words are “I want Mrs. Schneider to pray for me.”  That is the name of a dear friend who -because Bob needs to work tomorrow- will be accompanying us to the hospital so that I don’t have to be alone on MRI day.  Chase knows that while we can’t be with him, Janet and I will be praying for him in the waiting room while he’s in the MRI. 

Of Ending The Year With Our Foreheads On…

The year 2014 has less than a dozen hours left in it.  This year has seen us through many, many things and all along the way we’ve prayed for the strength to choose joy.  To that end -the joy part, or in this case, the hysterical laugh-until-you-cry part- I’ve compiled a series of actual status updates from my personal Facebook page; all of which were posted in 2014.  I chronicle these things (and have done so for some years) because life is too short and childhood is even shorter and there are too many parenting moments when you’re faced with the choice of either laughing or melting into a puddle of tears — so, as much as possible, we choose to laugh.  Many of the scenarios include personal hashtags: from the most common – #lifewithboys, to the most funny [playing off of our secret parenting fear that our children won’t get college scholarships] #notscholarshipmaterial, to a mini-series from our first family vacation for a wedding less than 48 hours before the October MRI#turningupinTulsa.  We’ve asked you to walk many hard things with us, so, for a brief moment, as we close 2014, enjoy our “normal“…

Note: due to the household including the addition of three boys in approximately three years, an abnormally large amount of the quotes have to do with bodily functions or bathrooms.  Consider yourself warned.

1.  “Don’t walk on the couch with a box over your head, Karsten.”  I just said this.

2.  My child just pledged allegiance ending in “...with liberty and crustless for all!”  We might be in trouble. #‎nationalismfail

3.  There wasn’t enough snow for snowmen, so the kids made snow heads. Can’t decide if the yard looks like Easter Island or a horror film.

4.  Someday I will understand the mysteries of the universe and be able to explain why there is a football in the shower.  Today isn’t that day.

5.  “Well I didn’t throw the toy at him…Uh, I dropped it and his head was just in the way!” #lifewithboys

6.  “Look, I don’t care if it IS the Death Star. You need to stop messing around and eat your orange.”

7.  “Uh, Mom? Uh, today…today, I’m going to uh, not spill my water three times at the table.” #‎aidangoals

8.  “Mom, I’m keeping this family picture so that when you die, I’ll remember you because you’re old and you’re probably going to die soon.”

9.  “I just came down from Kookie’s room to tell you I peed really, really big on the floor.”  The official moment you regret telling a child to come here if they want to talk to you.

10.  “Now we are engaged TO a great civil war…”: Aidan’s rendition of Gettysburg in which history lives, but prepositions take a hit.

11.  “Well, uh, Mom, I didn’t throw a Duplo at his head.  I threw the Duplo into the Duplo box and his head was in there because he was messing around.”

12.  “Mom, I didn’t trip him.  I was just standing there with my leg out and he, uh…fell over it.”

13.  “Graham crackers are for eating…not picking your nose!”  I need a raise.

14.  This is what Aidan does on his day off school.  Because when you jump off the toilet lid, you go big or go home… 

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15.  Bob: “Karsten, you need a shirt.“, Karsten: “Can I eat it?”

16.  As Karsten watches the Olympics, he yells “Come on, Bears!”…because that’s what you yell at a TV during a sporting event, right?

17.  Darcy: “Mom, Karsten’s being a disastrophe.” Grammar takes a backseat to conflict resolution.

18.  Early morning questions: “Hey Mooooom?! When I’m 60 or 29, can I pleeease watch ‘The Battle of Helm’s Deep’?” #‎lifewithaidan

19.  Mom Log, 7:09am: Boy enters with teeth marks in forehead and another boy close behind, screaming “It was an ‘askident’!”  This should be good.

20.  “Yes, he shouldn’t have licked your books, but you should never sit in somebody’s face!”  This is how “reading time” goes down.  Real talk.

21.  “I’m sorry, Aidan, but ‘Hey, look! There’s a giant hamburger falling from the sky!’ is not a viable conclusion to your class presentation on the history of Legos.”

22.  Chase and Karsten are arguing about whether “Alligator” starts with “B” or “C“.  This should go well.  And by “this“, I mean the next twenty years.

23.  “If you ever get the kitchen stool and climb onto the counter and drop the watermelon to the ground again…”  Well, that was a first.

24.  “Mom! I learned how to sort all the laundry and now I know from everything into which thing it should be sorted into.”  Next lesson?  Grammar.

25.  “Mom, if you let me have a cell phone when I’m in college, I’ll totally text you, but first, you’ll have to tell me how to spell ‘good’ so that I can tell you that I am good.” #‎lifewithaidan #‎notscholarahipmaterial

26.  “Bapa, you never played hockey, but Grammie can still put you in the penalty box, right?” #‎lifewithaidan

27.  And then the training sesh ended with the lesson: “…and that’s why you never run with an anesthesia mask over your face.”

28.  Me: Do you know who the president was during World War 2?Aidan: Abraham Lincoln?, Darcy: Who is the guy with the horse in the picture in the hallway? (George Washington), Me: I’ll give you a *major* hint…it was a Roosevelt. Which Roosevelt?, Aidan: “Oh, oh!! It was John! John Roosevelt!!”  #‎historyfail #‎notscholarshipmaterial

29.  Somebody found the medical supply cabinet… #‎trouble

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30.  “Well, Mom, *this* is why you had a daughter…because I’m always right.”

31.  “Kookie, you be Dark Vader and I’ll be Fran Cello, okay?”  May the force (and the knowledge of actual Star Wars characters) be with you, my boys.

32.  This morning, Aidan informed me that he could sneeze in Spanish.  So glad we can check that off the list of needed life skills…

33.  That time Aidan walked into a dining room chair and split his eyelid open…again.

34.  That moment you’ve been in hold forever with the US Postal Service and they finally ask you to say a command and all the phone computer picks up in the silence is the sound of the 2 year old standing next to you saying: “I have poop, Mom.”

35.  Darcy is reviewing family members’ names with Chase: “Uncle Dave , Aunt Meg , Captain America…”  Say what??

36.  “But you NEVER said I COULDN’T throw a chair!”  Helloooooo, Monday…

37.  Family pictures at the horse farm…, Grandma: “Aidan, did you tell your mom about your experience in the barn?”, Aidan: “I touched a horse!”, Grandma: “…and what else did you touch?”, Aidan [hanging his head]: “Oh yeah… I toucheded the electric fence too.” #lifewithboys

38.  “Do not drop your dinner plate on the floor for the sole purpose of doing an air guitar with your leg!” — parenting with Bob Ewoldt

39.  “Um…Mom? How old will I be when I’m 25?” -Aidan #‎notscholarshipmaterial

40.  “Hey, Mom? When Auntie Meg has her baby, can I burp ‘Rock-a-bye Baby’ to it? I promise to burp in English!” -Aidan

41.  Let me be clear about something…just because I never specifically said “Hey, don’t take the cap off the milk carton, put your mouth around it, and blow into the opening.” does NOT mean it’s an acceptable breakfast table activity. #‎lifewithboys

42.  That oddly poetic moment when the coffee you’re about to make becomes that much more necessary to your day… 

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43.  “Aidan, tonight is your first night in Sparks, and you should be happy about that, and I know that you’re a lot shorter than most of the other kids, but you should try to have fun, and it’s okay, and you’ll grow up some day.”  Older sister pep talks are the best.

44.  I just walked into a flooded bathroom and two guilty little boys who informed me that it had happened because one was “President Business” and the other was “The Piece of Resistance”.  Everything is awesome.  So awesome.

45.  One of my children really knows the meaning of the phrase “Go big or go home”.  In other, totally unrelated news, anybody have a failsafe recipe for getting black Sharpie permanent marker out of anything and everything…hypothetically speaking??

46.  As we discussed today’s [Columbus Day] historical significance…, Aidan: “Mom what language do they speak in Spain?”, Me: “Spanish. Why?”, Aidan: “No, I’m pretty sure that’s not right. There’s a Spain language.”, Me: “Yes, it’s called Spanish.”, Aidan: “No, it’s a [emphasis] Spain language…” #notscholarshipmaterial

47.  “Mom! Come quick! The boys put toys in the toilet and Chase is telling Kookie to flush them!!”  Thanks for the sucker punch, Thursday. #‎lifewithboys

48.  6:49AM – Chase gets mad at Aunt Carrie for possibly not sharing her wedding cake with him…in two days. Aidan asks when we are going to cross the Mississippi Ocean. #turningupinTulsa

49.  12:20PM – stopped for lunch in a food joint crowded with service people in uniform and while Karsten pointed and called them “Heroes” and we had a patriotic moment, Chase took a swig of the pepper shaker. #‎turningupinTulsa

50.  1:39PM – pulled out the brand new, educationally promising coloring books detailing things like “Explorers of North America”.  Gave myself a pat on the back for thoughtful parenting.  Listened to weeping and gnashing of teeth because Magellan isn’t Spider-Man. #turningupinTulsa

51.  3:47PM – left Mo for “The Sooner State” and discovered pieces of blue crayon all around Karsten’s chair.  I was informed it had been eaten because it was blue.  Having been on the road for 12 hours, I deemed this an acceptable explanation. #‎turningupinTulsa

52.  8:00PM – Aidan starts doing handstands off the hotel wall.  Discussion of appropriate hotel behavior ensues, the finer points of which may include parents lack of knowledge on the nearest ER. #‎turningupinTulsa

53.  6:42AM – After she let us know she woke up early to “relax on vacation”; we had a lengthy discussion with Darcy on “the wedding party” being a group of people rather then an event.  It went something like the famed “Who’s On First?” sketch. #‎turningupinTulsa

54.  9:05PM – Chase vows to grow up and marry Aunt Carrie.  Aidan vows to grow up and marry Darcy.  Time for the first “Why you can’t marry your sister” conversation…also the “Why you can’t marry your already-married aunt” conversation.  Good talk, good talk.

55.  1:18PM – Tried the educational coloring books again.  Got asked if I had a butter churn when I was little.  Education is not my friend this weekend. #‎turningupinTulsa

56.  Some are born great, some achieve greatness, some have greatness thrust upon them, and still others chuck the whole battle for a peanut butter sandwich. #‎lifewithboys

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57.  “Mom! I got super frustrated and totally freaked out and flushed my clothes down the toilet! …but then I took them out again and they’re on the bathroom floor. Is that okay?”

58.  [later the same day as the clothes flushing]  In this house, to have one gross, bathroom-related Facebook status per day is pretty standard. To have TWO gross bathroom-related updates in a single day is pretty amazing…even for the Ewoldt boys. Karsten, for filling the sink with water and “painting” the bathroom with the toilet brush… This one’s for you.

59.  Just because I never *explicitly* said “Hey, don’t take graham crackers and crush them with a hammer on the living room table.” doesn’t mean it wasn’t implied.

60.  Bob: “So children, what did you learn in Sunday School today?“, Aidan: “Hey! Do you guys know how to do arm farts?” #lifewithboys

61.  I shook the freshly delivered Amazon box [full of Legos] to give the December boys a birthday present hint today.  Aidan’s guess?  A box of sweaters.

62.  So, apparently, when you hear “Hey Mom! Come quick! Chasey’s all tied up with tape!”, it could literally mean that Chasey is indeed all tied up with tape.  In other news, the 6-year-old just had his taping privileges revoked for life.

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63.  “It’s okay, Mom… I only carry dishes while walking backwards with my eyes open and I’m very careful.”

64.  “Mom, we’re really sorry for breaking your ironing board, but now that it isn’t flat anymore, it’s makes a really good slide. Is that okay?” #lifewithboys

65.  Bob: “…and that’s the story of the gospel and our advent reading for tonight…any questions?”Aidan: “Yes! Why don’t we do piñatas for birthdays??” #‎stayontarget

66.  Grief counseling for small boys in traumatic circumstances: “Son, if you insist on bench-pressing a full bottle of ketchup over your head, things like this are likely to happen…”

67.  Without a doubt, the best bedtime excuse I’ve heard in a long time… “But Mom, I can’t go to sleep without my forehead on.”

Goodnight and goodbye, dear old 2014…

Moment by moment.

The lines have fallen for me in pleasant places;
    indeed, I have a beautiful inheritance.  Psalm 16:6

The Story of 2014

Once there was a family of six: a handsome father, a redhead mother, a sole princess girl, and three little wrestling and running boys.

The handsome father, he worked in two places – one a large company, the other a church.  In both places, he worked with numbers… lots and lots of numbers.  In the free moments, you would find him completing a half marathon, quiet with a book, or very lately, working in his new garage.

The redhead mother spent the days holding the pieces together… pieces of laundry and food and school and sometimes, yes sometimes, even silence.

The sole princess girl, just a second ago a babe in arms, was suddenly eight and tall, and already a fast runner.  She was never so happy as when she was running… just like her father.

The oldest of the wrestling boys was five, nearly six, and started wearing glasses to see, which made him look wise.  He began the school journey and stretched his legs at running to try and beat his sister, and if he could, would choose to be buried under a gigantic mound of Legos forever.

The middle boy, with his lightning scar and white head, also began his school journey, but with special help and the fulfillment of his special wish… to ride a bus.  He continued, at every turn, to live up to his name and found his way through life in a never-stopping, never-settling way.

The baby boy, a baby no more, stood nearly as tall as the middle boy, with wide shoulders and stance that spoke of having older brothers and being ready and willing to throw the first punch.  And yet, he would sit quietly with a book for the longest time and everywhere he went, he looked for horses.

This family of six were wanderers.  They left their tiny space when the word “cancer” was first spoken and lived with grandparents for help as two years came and went.  They decided to sell their tiny space and pray for more room close to everything held dear, and the tiny space almost sold three times and they prayed for wisdom to know… and then the tiny space, their first little home, sold and they were led to the perfect little blue house near everything held dear and so, wanderers no more, they moved and settled in the early Fall as the leaves began to change.

And in the first hours of owning the little blue house, the call came that something was growing again under the lightning scar in the white head… and the family stopped and prayed for moment-by-moment grace to find the joy in the every day as they waited six weeks and checked again, and then six more and again.

And by the time this story rests in your hands, another check will have come and gone and a course of action will stand in front of the family.  But they put aside the fear and in grace, choose faith and yes, even joy for their family and their boy, and the root of it is found in this season and in another little boy, born thousands of years earlier.  This stable-born boy would grow to be the Savior and Lord and, bloodied arms stretched wide, would triumph over sin forever and ever, and make a way for death to have no victory or sting, and in this boy-turned-forever-King, there was and is hope and joy, and in this the family of six, in their little blue house, rests secure.  They hope and pray the same for you.

[This is the text of the Ewoldt Family Christmas letter that was mailed in early December, 2014 - Thank you for walking this year with us...moment by moment.]

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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