Tag Archives: family

5:31

Five hours and thirty-one minutes.

For five hours and thirty-one minutes he pounded the pavement, putting his feet to his purpose. And for all those hours and all those miles, past crowds, houses, and fields in the November sun, he ran holding a sign in the air – “Chase Away Cancer”.

And he told me tonight, though he kept his headphones in his ears, he never needed them as he talked to the people around him. People who came alongside him to talk about his sign because they were survivors, neighbors, family, friends – each one a person whose life had been touched by cancer. They saw him identifying with it in his sign and they identified with him as they all ran together.

And this morning, as he geared up and prepared to walk out the door, Chase and his fuzzy head stumbled down the stairs before the sun was up, urging him to run fast, not slow down, and “Run like me, Dad”. And then Chase covered his fuzzy head against the frost and cold and stepped out along the route to cheer the runners on, holding a sign alongside his crazy, cheering grandfather, proclaiming that “sweat is liquid awesome”.

Five hours and thirty-one minutes later, Bob crossed the finish line for Chase and fighters and parents and friends everywhere. And he wasn’t alone. You put your hearts into this race with him, and today, nearly $5,000 dollars went to St. Baldrick’s in their tireless efforts to chase cancer far, far, away.

THANK YOU.

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This Is Love

Seven years ago, right around this same time, I stood, holding Bob’s hand, Aidan kicking in my stomach, and stared at the stern, older gentleman behind the desk and dais in front of us.

His position in the room was raised to help indicate his position in the building – for he was a judge…the judge, to us. Our papers lay in front of him as he weighed the final decision in the case, and then his words came, directed to the husband at my side.
“This adoption is done now. It’s final. And you… [he waved the gavel in Bob’s general direction] I have words for you. You didn’t have to do this, but you did it anyway and I want you to know that you’re a man of exemplary character.” And then, turning to me, he made sure I had heard the words that Bob has jokingly said should be framed ever since – “You know that, don’t you?”


Bob had taken the daughter born into my arms alone and made her the apple of his eye and his firstborn with a knit beauty that surpasses even blood and DNA. And now, seven years later, it’s so strange to write those words because it’s as if he has always been her father – in fact, I believe he was destined to be that person for her.


And forever, there’s this living, breathing picture of adoption – one person to another saying…

“I don’t care where you came from or what you bring with you, but I LOVE YOU, and what’s more, I want you to be with me forever and I’m giving you my name.”

“For everything comes from Him and exists by His power and is intended for His glory. All glory to him forever! Amen.” Romans 11:36

Moment by moment.

Bob and Darcy - September 2008

Bob and Darcy – September 2008

Chase’s Story [VIDEO]

Have you ever seen this video of Chase?

If not, I highly recommend it.  And even if so, feel free to watch it again…  We have been so blessed to partner with the St. Baldrick’s Foundation this year and are continually thankful for the platform they give us to share Chase’s story with so many.

-MbM-

[Our deepest gratitude to the incomparable Matthew Lackey for his mad, crazy video skills.  Also, a huge thank you to both Jane Hoppen and Kristen Thies for all they did to put together the finished product and the time spent filming it.]

Three Years And A Letter

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This is my command—be strong and courageous! Do not be afraid or discouraged. For the Lord your God is with you wherever you go. Joshua 1:9

Friday, July 31, 2015

My Chasey-Bear,

How very far you’ve come!  When they first put a name to the giant ball inside your head, the nightmare of it spreading through your skull and down your back, I read that “long term survival” was 3-5 years, and now, here you are: at the three year mark.

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I know you don’t like me to even speak about the hospital on the majority of days and it’s okay, we can mostly play on your terms, but today is different.  This day in your short history, you were on nobody’s terms and only God himself knew what came next as we learned the unfolding: that you would carry a terminal illness with you the rest of your breath here on earth.

I still remember how small you looked in that first ER bed, how confused your eyes were, and how rosy your cheeks got from all the steroids they pumped in as they tried to save you from yourself before the damage became too great.  

I remember holding the oxygen mask to your face and thinking it couldn’t really be happening, and if we were in a movie, that would have been the moment for slow motion and an audible heart beat.  Because sometimes life feels like it’s slowly tearing apart.

We’ve given you over to Jesus more times than I can count and held you close even more time than that.  Yet here you are, still on your journey, standing smack in the middle of your life road, laughing at anything barreling down on you – and how we love you for your fierce, “you-and-what-army” self.

I know these days turned into years have not been easy for you – and I know “not been easy” is a gross understatement.

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None of us know how much further this road continues, but I know if it’s with you – as I’ve known from the first time you kicked inside of me – it will never be dull.  And so we’ll just keep at it as we have tried to all along… in His grace, moment by moment.

All our love, my darling survivor,

Daddy and Mama

Your grace abounds in deepest waters. Your sovereign hand will be my guide.
Where feet may fail and fear surrounds me, You’ve never failed and You won’t start now. So I will call upon Your name and keep my eyes above the waves when oceans rise. My soul will rest in Your embrace, for I am Yours and You are mine.  ~Oceans, Hillsong United

The State of Chase: A Little March Madness

As many of you know, after months of every six-week-scans, Chase was granted a three month reprieve which will be up in a few short weeks.  March has been an amazing, breath-taking month and we’ve been honored to be a part of several St. Baldrick’s and Lurie events already this year.

"Take a survivor picture of me, Mom!"

“Take a survivor picture of me, Mom!”

One of our favorite events has been visiting schools in our district for shave events.  Watching children donate their hair for other children takes my breath away.  There is no guile, just love and caring with the greatest commitment.  The first school we visited, Chase had determined to say something but in the face of the entire student body, staff, and parents, he decided to stay quiet.  I can’t blame him – I was a little terrified too.  However, last week, at our final event for March, he opted to speak and in a gym full of children, staff, and parents, he found words about St. Baldrick’s being a special thing…and then, simply, this tiny 5-year-old with a microphone in his hands voiced the best words: “Thank you.

Talking about St. Baldrick's at Madison Elementary

Talking about St. Baldrick’s at Madison Elementary

In some ways, March has really been a month about hair.  We’ve had the shaving events including Aidan’s shaving, and for the first time, Chase spoke about not having his.  It was “crazy hair night” in the kid’s church programs and while Aid’s full, thick hair easily stood on end with a little gel and styling, when Chase asked for the same style, he expected the same look, and instead, he looked a little like Baby Jack-Jack from the Incredibles – with a single tuft of hair off the crown of his head.  We all thought he looked awesome.  We all thought he knew.  It wasn’t until that night, as he looked in the mirror, that he fully voiced and realized his difference in this area.  “I want my hair to look like Aidan’s!  It doesn’t work! [he smacked his head with the palm of his hand] It’s just my same, stupid baseball. Don’t talk to me about it right now. I’m very angry.”  This was the first time Bob and I have ever heard Chase voice discontent with his differences.  It was both heartbreaking and impactful for us as moments like this one reiterate that we made huge medical decisions which will never stop greatly effecting his daily life.  

It was during these same weeks that I received an email from Chase’s school about hair.  Kids in his class were beginning to ask more questions about Chase and why he didn’t have hair like them, so, last week, we went into the school with a program designed to educate and answer questions and the woman read a story about a boy named Billy, and she brought a bald doll on whom all the children practiced cleaning central lines, and then Chase got up and showed his class some pictures – pictures you all know by heart – of Dr. Lulla and surgery days and hospital days, and he explained each one in his own way and the kids sat and listened.  And then, because they’re five and they’re wonderful, they fixated on Chase getting to do special things in the hospital and when we reminded them that hospitals try and make it special because Chase couldn’t do “normal” things like swim and be outside when he was having chemo, it reminded them how much they all like to swim and be outside and though it turned out a little like nailing jello to a wall, it was precious and real because Chase stood up in front of them and talked about a part of who he was and is.  

Chase and Chelsea -from Welness House- work with a chemo doll and Chemo Duck to talk to Chase's class about cancer life.

Chase and Chelsea -from Welness House- work with a chemo doll and Chemo Duck to talk to Chase’s class about cancer life.

Courtesy of Lurie Children’s and LaSalle Bank, March also brought another first for Chase: a Chicago Bulls game.  I wish you all could have been there the minute he stepped into the crowd on the edge of the box and took in the fullness as a visiting choir sang the national anthem, sound and song echoing off the rafters as the lights glowed around.  He’s learned how to wear a hat to cover his ears which greatly decreases his over-stimulation and helps him enjoy large, loud moments and his eyes were huge and awe-filled as he turned and screamed “This is awesome!”.

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It was also during this time that Chase lost a cancer friend.  They only met a handful of times, but Rusty and his family have always gone before us and encouraged us so.  And that losing season brought up lots of questions for him again.  One afternoon, the day before Rusty passed, Chase “composed” a message to him on the computer and then we sat on the couch and talked and he asked if he was going to die soon too because he has cancer and chemo and talks to Dr. Lulla like Rusty.  Some day, I will write about this conversation, but today, I can’t.  There were lots of tears that day – for us, for Rusty, for this broken world – but there was also joy in talking through this not being the end.  To be able to speak about these things was bittersweet and we count ourselves beyond blessed to have known Rusty and been encouraged by his story.

Early morning checking in on Rusty via Facebook

Early morning checking in on Rusty via Facebook

Finally, this March time has been an up and down time with some anxiety as Chase has had some health issues that we’ve been monitoring.  He’s complained of headaches and frequent stomach aches, failed his eye exam, and then, started tripping and falling quite a bit.  It became apparent within a few days that he had an issue with his ear, and while that has now cleared up and he seems more steady most of the time, we continue to watch his sleep patterns, appetite, and speech, as he hasn’t been himself at times – to the point of effecting his school schedule.  All of these symptoms can be normal, or they can be very not normal.  Which is both comforting and deeply terrifying because we never know when he can’t remember his birthday if it’s because he’s five or because he has cancer.  We know that the MRI is soon and that if it’s a cancer concern, his symptoms will become more apparent.  And so, as always, we wait…one part scoffing at how silly and over-concerned we feel, and one part with the silent “what if?” question. 

But for today, in this moment, he’s fine.  In fact, I recently found him hiding under the desk in the living room with  his father’s electric razor trying to give himself an even more bald head.  So, we close this crazy month and look forward to more Spring and the weekend celebration that life is ours and death has no hold, and we take each breathing day…

…moment by moment.

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 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.

Joy In The Mirror

We sat at the long table in the restaurant.  A table full of friends who had invited us to join them and we’d agreed.  I looked at Bob and he looked at me over the wiggly, wriggling heads struggling to sit still like grown-ups do.  How crazy were we to say yes to a restaurant with three little boys in tow? 

Chase especially struggles to sit still (a running family joke given his name), and so he’d sit for a while at the table and then as a reward, I’d get him up and let him walk around and back before sitting a spell again.  And I watched people watch him… His shoes are like the shoes of other boys, his clothes and eyes and energy and everything else…and then his white, white head and the slightly faded, but oh so noticeable scar that runs the length of skull and you can see the looks of pity, the politely averted eyes.  I don’t blame them.  I’d do the same thing.  I find myself wanting to run up to them and say “It’s okay!  Look all you want!  This is a miracle in front of you!“, but instead, I smile, move on and caution Chase not to trip the servers in his enthusiastic dash.

You see, sometimes being out in public with a visibly chemo-worn child is like stepping in front of a mirror.  When we’re home or with good friends, we’re just us and everybody knows Chase.  But when we step out, like that day in the restaurant, it’s a mirror.  Stop.  Look.  We’re different.  This scar says our life looks nothing like yours.  The loudest of reminders in the slightest of glances.

And then, a family approached our table.  They spoke of mutual friends and places from years past, they knew Chase from his Facebook page and they prayed for him and they’d recognized him.  And then they encouraged us with their words and pressed a gift card into our hands.  “Your lunch is on us“, they said.  And then they were gone.

The gift card sits as a reminder with my papers – you just never know.  There in the mirror that day, there was fellowship and joy because of the recognizable scar.

So pay it forward, play it back, make it right, stop to help – don’t be afraid to make eye contact because you never know when you might be staring at a miracle.  And you might be stepping next to a battered parent in front of a battered mirror and showing them joy.

Moment by moment.

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Being Ready To Go

Since I last wrote about Chase (a veritable age ago), he has been discharged from his sick visit, readmitted for his inpatient chemo, and re-discharged post-chemo again.

Chase in the midst of his first admission for a fever, with his NG tube in his nose.

 The five days in between our hospital stays were packed and precious with family times, in which we saw the truth of doctors words – “Just wait until you get him home.” Chase became a different child in those five days! His color improved, he started talking and interacting more, and even ate food! (Note: this is a big victory for an AT/RT patient as their protocol is so intense that many children stop eating altogether. Chase still needs IV nutrition on a daily basis, but just getting him to the table is a big deal.) The doctors also said that most parents mark the time by this – “When your child starts doing really well, that means it’s time for more chemo.” Check. Time for the big bags, long infusions, and constant monitoring that goes with his inpatient chemo stays.

Chase swinging on the swing with Daddy during one of the few days at home from “his hospital.”

It’s amazing and a little sick how quickly we adjusted to this “normal”. In fact, we are already forming a routine. This is a blessing, but I truly never thought there would be a day when medical staff hourly monitoring my child’s vitals around the clock would be expected. (Have I mentioned recently how incredible the medical staff is? I should. They are.)

At this moment, we are on the other side … Heading for the “nadir,” the low point. (Real talk: I had go look up “nadir” when I first heard it. In a word, it’s the opposite of “zenith”…ie: when Chase is going to feel absolutely awful). His color is not as good, he’s more tired and irritable, and he regularly complains that his “tummy hurts”. We can tell that his counts are dropping: he’s already clocked in with a couple low grade fevers and we know its only a matter of days before the fevers truly set in and we will be inpatient again.

Chase’s chemo day was switched to Mondays and so we will go back tomorrow for what should be an outpatient clinic day. …but we’ll pack our bags anyway, just in case.

Chase during his inpatient chemo this last week.

Becoming accustomed to living a life that could be dropped, switched, and hospitalized at any moment is a challenge. It’s hard not to be consumed with watching Chase for changes and stalking him with a thermometer in hand (it’s a funny picture, but I’m often tempted…), yet it’s just another facet of the “moment by moment” mindset we keep ever in front of us.

And so we continue on … Making memories, finding joy, and being ever ready to go.