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.

Actually, I got the idea after my kitchen practically jumped out and attacked me.

Oh my word, I’m cringing even looking at it… And I’m cringing even more, because, I took this second picture significantly into the cleaning process and considered posting it instead.  I secretly wanted this to be the messy kitchen you saw that might possibly promote me to an organized-neat-freak-whose-house-is-so-clean-at-all-times-that-the-tiniest-mess-is-a-disaster in your mind.  I actually considered downplaying the mess to somehow make me look better.

If I’m honest with myself and with you, my house is messy far more than I’d like and I have proof of this pattern, because the other day, when I cleaned just for the sake of general responsibility and health, Darcy walked in and gasped: “Yay! Is Grammie coming today?” [cue the psychological damage, please…]

When we first got married, a very wise woman gave me advice on carving out time and making priorities and our many conversations would go like this: I’d ask “But what about this good thing?  …or this good?  …or that better?”  And she’d quietly smile and knowingly state:

“You’re saying ‘no‘ to one thing to say ‘yes‘ to another – your ‘no‘ to that social commitment is a ‘yes‘ to the commitment of your relationship and making time for it – the best thing.”  

I love this idea and I think it bends out into my home life and family life too.

When one of my children needs extra counsel and love, when there’s a writing deadline, when a 4th grade landform, a 1st grade corn celebration party (for real, it’s a thing), and a kindergartener’s reading homework all coincide – and they all need to be addressed at the same time, something has to go so I can keep breathing, and that something (for me) is usually the dishes.

One of my favorite phrases is: “There are only so many hills you can die on and this shouldn’t be one…”  (Seriously, I’ve long considered a needlepoint or canvas…)  And so, after what feels like a defeated week, I’m posting a picture of my dirty dishes.  And I hope they encourage you! (weird, right?)

Because sometimes, whether in casual conversations or on social media (particularly the latter), it’s easy for me to feel shame when I see the best and most polished in others’ lives and then I feel terrible for not being able to “do it all”.

For me, saying ‘yes‘ to my children, to my husband, even to something like writing, often means letting something like the dishes go for just a minute. (or, you know, two days…[double cringe] )

I promise, it doesn’t look like this all the time, and I definitely don’t want to hold up my dirty dishes as an example because each person’s “saying ‘no’ to say ‘yes’ moment” will look different, but for me, this is real, so I’m coming clean over the dirty today – this week, I said ‘yes‘ to my family…and the dishes took a little longer to get clean.  Because most of the time, my life doesn’t wrap up all neatly like a pretty package…

And I need to remember to take even the dishes…moment by moment.

“Teach us to realize the brevity of life, so that we may grow in wisdom.” Ps. 90:12 (NLT)

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

To be able to read this a year later without significant change in the story is a great gift.  -MbM-

I’m a cancer mom.

There are fourteen months of “there’s less than 20% chance”-beating treatment, over one hundred inpatient days, as many outpatient days, ER runs, ever so many blood and platelet transfusions, nine chemo therapy drugs, multiple surgeries, and endless procedures and tests saying that I’m a cancer mom.

But what does that mean to me? Just this…

It means being wakened in the night by nightmares and then realizing it really did happen…I really did hear “There’s a large mass” pronounced over the ER bed of my 2-year old and there’s been no waking up ever since.

It means absorbing the sad looks and conciliatory touches to the shoulder and wanting to shout that we aren’t at a funeral yet.

It means “normal” defines any trip made to the hospital with myself behind the wheel instead of five-point harness-strapped into the back of a speeding sirens-and-lights ambulance while assuring him it’s going to be okay.

It means handing out candy at the door and seeing the looks on the costumed faces as they take in the too white, scarred, bald child at my side and ask their parents what he’s supposed to be while the embarrassed adults avert their eyes and move quickly away.

It means “fixing dinner” is preparing an 18-hour IV bag of nutrition and hydration and then attaching it to a tube in his chest.

It means watching a chemo being carried into the room…a chemo so light sensitive that it must be protected in a dark bag…and then they hang it and pump it into my baby.

It means being the grown up and saying; “You need to take your medicine even though it’s yucky.” to a red, tear-stained face when I want to sit down and cry right along with him.

It means listening to him whisper “I’m so brave” over and over as the medicine lulls him into a stupor and I hand him off to sets of surgical masks and scrubbed arms, knowing he’s going into the operating room and I can’t go with him.

It means that while other kids his age are learning to ride a two-wheel bike, I take joy in his remembering a words or learning to jump with both feet at the same time because in his world, that’s a really, really big deal.

It means there’s a kit in my purse that has gloves, alcohol swabs, clamps, and everything I need for a child with a central line and I carry it everywhere he goes….just in case.

It’s being up and out at 2:30AM, not for a party, but for an ER run in which I find myself praying that the fever goes down and the blood pressure goes up and that we can just be admitted to the regular oncology floor and not the ICU.

It’s learning to walk, and even at times run next to a child attached to tubes because playing makes them feel better.

It’s accepting the part of the living child forever lost to the moment his brain was open on an OR table and loving the living child he is today.

It’s feeling like I can’t breathe until I get answers and then they have none and I somehow go on breathing.

It’s allowing the child I swore to protect to go through intense seasons of pain, heartache and potentially life-long damage in order to try and save him.

It’s sitting by a hospital bed; a hundred percent powerless to fix anything and praying for the day the chemo stops hurting his skin enough that he’ll be comforted by a mother’s touch once again.

It’s holding him close next to the Christmas tree and answering “Mommy, will you hold me close so the death won’t get me?” without completely losing it.

It’s hearing that after almost two years of clear scans, there’s something growing and nobody knows what it is and the best thing to do is to wait and check again in six weeks and I find myself agreeing over the sound of my heart ripping open.

It’s knowing we’re out of options to cure his diagnosis and still getting up in the morning.

It’s coming to peace with the understanding that what I do may never change an outcome or what’s ahead for my darling son…and then finding the strength and purpose to make the most of every second of every day anyway.

This is what it means for me.

I’m a cancer mom.

My darling 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.]

Pre-procedure game of “Got Your Nose” was pretty epic…

Monday

He lay on the pre-op bed and absolutely knocked us over:

“I will do a good job and I will be fine because I’m a survivor, okay?”

The medicine kicked in and he asked me to text his home healthcare nurse and let her know he’d been brave for the needle in his arm.  And then, with a sigh, he passed into oblivion again for yet another MRI.  I wish I could tell you the number but I’ve lost track…his 30th? …40th?  Yeah, there have been a lot.

“Tell Miss Joanna I’m doing it, okay? I give you permission to tell her.” -Chase

Tuesday

Despite a brief meeting with Chase’s neurosurgeon on Monday afternoon, the final word came, as it always does, from neuro-oncology regarding the MRI.  The cysts appear to have grown again, but Chase’s spine looks clear, his condition is beautifully stable, he isn’t having seizures, and so, we continue to wait.  If the cysts continue to grow, he may need a biopsy or some other surgical intervention, but it is not the right time for those things.  And so we wait some more…

Placing special markers on his spine

This is bad because nothing should be growing.

This is good because nothing is growing fast or harmfully.

This is the same because everything is growing marginally as they has been all along and we’re pretty much exactly where we were three months ago: watching, waiting, and scheduling another MRI in a few more months.

Out of the tube and awake…barely.

And as I write these things and feel a little weary as we start the fourth year on this AT/RT road, I’m mentally checking myself for complaining about a living, breathing son who probably shouldn’t have survived more than six months, some three years ago.  The scan results comes down to what they always do: perspective.

Stuck in the wait a little while longer and choosing joy… moment by moment.

Blood pressure cuff + stick arms … If anything can handle it, Dr. Ewoldt can ;)

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Bob and Chase preparing for the MRI – Thursday, August 14, 2014

We’re supposed to “throw back” on Thursdays and “flash back” on Fridays and today is yet another date to mark.  Recently, we’ve had an awful lot of “one year ago”, “two years ago”, and so on, but sometimes the days are really long, the years are short and stressful, and rehearsing our previous survivals and God’s goodness to us in them is the only way to keep breathing.  And so, we go back…again.

One year ago today, I stood in the barren kitchen of a newly bought house (a seeming symbol of a fresh start), staring out at the view that would be my new back yard, and listening to the voice on the other end of the phone as my stomach dropped: “His spine looks clear and overall, his brain looks amazing, but…”

Those words kicked off a season of deep shadow that has been some of the most difficult waiting since his initial diagnosis.  The every six week scans, the waiting for growth… 

But today, we are stopping to mark and remember that Chase has now lived for one year, one whole year with his tumor bed growths/radiation effects/whatever they are and he’s lived as fully and well as ever he can.  We’re so thankful.

It’s incredibly frightening to write these words -about how well Chase is doing and how long he’s gone without an issue- when he’s about 72 hours away from another MRI.  But no matter what happens in this next week, today is a good day and we’ll take it one breath at a time in the… moment by moment.  

“Do not be afraid or discouraged, for the Lord will personally go ahead of you. He will be with you; he will neither fail you nor abandon you.” Deut. 31:8

“Wait here”, the manager said, and we leaned against the wall, all six of us, like a giant line-up.  I turned to Chase and whispered: “Are you excited to meet Matt Redman?” and he nodded and grinned as  we leaned against the wall in the wait. 

I suppose we expected fanfare, or a crowd, or something to herald this amazing artist – but suddenly, humbly and quietly (I didn’t even from which direction he came), he was standing in front of us and there were no handshakes – only hugs.  He said he’d heard a lot about us and then he moved down the line of us and greeted each one, learning names and personal details.  He met Karsten’s stuffed dog, talked with Darcy about her loom bracelets and their colors, and got on his knees in front of Chase and Aidan and asked them if Spiderman and Batman were in a competition, who would win?

And the craziest, most amazing part of it all?  We got to stand in front of Matt Redman, look him in the eye, and try and put into words what the song 10,000 Reasons means to us….  

How it underscores every car ride to the hospital…

How it’s floated out of most pre-procedure rooms…

How most of the hematology and oncology staff have been shown the music video at one time or other…

How it was the last thing Chase heard every day as he whispered “I’m so brave” and slipped into unconsciousness on the radiation days…

How every music therapist in the hospital downloaded the chords because they knew if they went to Chase’s room, it’d be the song he’d want to hear…

How it wrapped us up as we’d sit, high about the lake, day after day in the dark cancer days when the fevers wouldn’t break and the cancer cells wouldn’t leave…

Oh how we failed!  There are not having enough words, enough good words to put into a few sentences what three years of this song as a soundtrack to our lives has meant.  How precious it is to us, and how precious Matt Redman is to us because of it.  There have been times and seasons when our hearts were broken and we could not call out, and the only thing that came from us to God were Matt’s words, Matt’s voice in this song as we had none left ourselves.  This song has been one of the greatest gifts — until last night when we got the opportunity to try and find the words to tell him of it’s impact.

And how I wish you all could have been with us and watched as Chase sang along to so many of the songs, raised his arms in worship, clapped and cheered, even danced a little.  And at the end of the night, before the closing song, the room got quiet as Matt spoke and he told them all about how he’d just met a family and the kids were all “firecrackers” (I mean, did he get us or what?) and that one of the sons had a brain tumor and then, Matt Redman told the room a minute of our story and Chase’s love of the song because – as he said – we were there to worship, but the church is always there to bear each other’s burdens, and we are the church, and as I sat in the hundreds of people, with Chase on my lap, Matt Redman invited the church to bear Chase’s journey with us, as a picture of Chase went up on all the screens, and Chase gasped and exclaimed “That’s me!”.  Matt dedicated the song to the Lord, but said they’d sing it with Chase that night, and so we all stood together in this great room with hundreds around us and cried as we sang every word by heart – the way God put things together blew me away yet again.

And on that day when my strength is failing,
The end draws near and my time has come,
Still my soul will sing Your praise unending…
Ten thousand years, and then forevermore.

And all the way home, late into the night, Chase chatted on about “my friend Mr. Matt” and how he loved him and missed him and wanted to give him another hug “…because he sang my song, Mom!  He sang my song!”

We are so thankful for this once-in-a-lifetime experience of worship and fellowship…

…moment by moment.

*For more on the ministry and music of Matt Redman, please visit his website here.*

Her life as she knew it changed forever when she was 17 and she has faithfully used the crazy hard changes for truth and beauty and just recently, the children and I had the great privilege of actually meeting Joni Eareckson Tada.  I watched their faces and they were afraid to get too close lest they hurt her – they have yet to fully understand her wheelchair and it’s reasons – but she smiled at them and encouraged them to come closer and they couldn’t resist her joy.

Do you know her story?   It’s real and it’s raw and she’s a hero of mine because she never stops seeking the goodness of God when all the life circumstances are anything but.  Knowing her story, listening to her speak, reading her writing – all of it – is such a wonderful reminder that the day for no pain and tears is coming.  It is not today, but it’s coming, and God remains faithful while we wait.

Moment by moment.

“There is no circumstance, no trouble, no testing, that can ever touch me until, first of all, it has gone past God and past Christ, right through to me. If it has come that far, it has come with a great purpose.” – Alan Redpath

[This quote is a favorite of mine and is listed among Mrs. Tada’s favorites as well.]

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.

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.

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