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 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.

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

 

In Anticipation…

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You guys!  We’ve poured our hearts out this week and right now, I can’t even begin to articulate how much all of your encouragement and prayers have meant to us.  You’ve taken the time to read our words, follow our stories, and in this busy, busy life, that’s incredibly precious.  Thank you.

You’ve anticipated the absolute worst with us, so I’m super excited to invite you to sit with us this weekend and anticipate something really amazing.

For a year now, Make A Wish has been incredibly patient as we’ve cycled through idea after idea while we tried to find the one thing that best fit Chase and worked for our family. We finally decided and it’s happening this weekend!! It’s not a vacation – we opted for something 24/7 that encapsulates Chase’s energy. 🙂

Can you tell what I’m talking about yet?

On Tuesday, MRI day, a landscaping crew came to the house to prepare our poor yard. I wish you could have seen and heard what we did: the owner was out and working with the crew, saying that he didn’t care what it took…they wanted to do this special thing for Chase.  Bless him.  This is probably the most amazing thing about working with Make A Wish: meeting the people who give and dedicate and pour their hearts out for kids like Chase.  Bless them.

And sometime today or tomorrow…this will happen!

Here’s the thing… Chase doesn’t know.  I mean, he knows something is up because we found creative ways to talk to him and make sure we captured what he wanted, and a sibling let something slip, but he doesn’t really know.

Can you tell what I’m talking about yet?

So, come and anticipate this with us. It’s been a hard, long week and this weekend is going to be really special.

-MbM-

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