Category: Chase

Needs Repair

As I opened the old cardboard box covered in Christmas stickers, the kids crowded around trying to be the first to glimpse the ornaments lovingly stored inside.  Even though decorating the tree can be stressful, and this year was proving especially interesting as I worked with Darcy, Aidan and two other children who refused to respond to names other than ‘Spider-Man’ and ‘Buzz Lightyear’; pulling out the ornaments and putting them up is one of my favorite things in the world.  We, all six of us, end up standing in this area of a few feet and looking through all that has been while thinking about what is yet to come.

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There are the Sunday school ornaments from when I was Darcy’s age and the kids laugh at the thought of me as a little girl, writing my name in glitter. There are the ‘Baby’s First Christmas’ globes with a date I won’t print on this page and someone asks if running water had been invented by the 1980s while Bob laughs. And then the kids go through their own ornaments, like rediscovered treasures. with a new one marked for each year, and they laugh at some of their earlier choices and greet others like long-lost friends.

Christmas 2013 was the year Darcy chose a Cinderella ornament and all three boys picked small green and yellow John Deere tractor ornaments.  Those were hard days to keep the tiny metal tractors on the tree and tamp down the temptation to take them off and play with them every day, but mostly they succeeded.  

However, in the course of only a few years and the packing, unpacking and rehanging, Chase’s tractor had succumbed to the wear. It was missing it’s front wheels and steering wheel and I’d totally forgotten about it until I reached into the sticker-covered cardboard box. Chase pressed close and as I pulled out the small box for the tractor, I saw the bright pink post-it with my mom’s neat handwriting from last year: “Needs repair” so I quickly tucked it back into the box. This wasn’t the moment to fix it and I knew if Chase saw it, he’d want it, so I gave him his ‘Baby’s First Christmas’ ornament instead and we hung it with care.  But as I’d moved away from my place in front of the box, Aidan took it, pulling out the damaged tractor’s box once again, holding it high over his head, and yelling “Whose is this?”

The second Chase saw it, he jumped, screaming “Mine! It’s mine! Give it to me, Aidy!” And ripping the box open, he saw the truth of the words he could not read and immediately stilled. “Oh. Mom, this is broken. We need to fix it.”

I held out my hands for the box and the broken ornament.  “I know, sweet boy, and we’ll fix it, but for now, why don’t you give it to me? This isn’t the right time. We’re decorating the tree. We’ll get it all set up and then you can hang it another time, okay?”

His head dropped low and I waited for the storm, but it never came. His voice stayed quiet. “But it’s my ornament. I remember it. Can I please hang it up even though it’s broken? I love it.”

Isn’t this the breathtaking wonder of Jesus coming to this world? The purpose in the story of this season? He came as one of us, grabbed for the broken and damaged, the things we’d rather hide away, fix before acknowledging, find another time to deal with, and He lovingly says: “I remembered you. You’re mine. I love you in your brokenness and I’m making all things new.”

Moment by moment.

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If God Is For Chase . . .

“Mom, do we still have to go to school even though it’s your birthday? Can’t we just stay home? . . . Uh, to be with you?”

I couldn’t help but smile at the logic of Aidan’s plea. The part about actually spending the day with his mother was definitely an afterthought to the part about getting a day off school.  “Get ready, buddy. The buses are coming soon.”

The birthday breakfast had been consumed, Aidan and Darcy were preparing for departure, and Bob had taken Chase to an early ophthalmologist follow up.  It was another busy day and a part of me thrived on it as I stood in the middle of the living room and took in the backdrop of holiday lights around another morning with the ones I love.

The ringing of my phone on the table by the Christmas tree cut into my thoughts. It was Bob.

“Hey, we’re done with the appointment.”

“Good! He’ll be on time to school. How did it go?”

“Not great. Chase needs surgery . . .”

How things and feelings can change in a minute.  

“What! Why?”

“The cataracts.” Bob’s voice was subdued. “They’ve grown. The doctor said his vision was about 20/40 in both eyes the last time he was in and now, he’s 20/60 in one and 20/100 in the other.  It’s time.”

“Now?”

“After the holidays . . . after the next MRI.”  There was was the subtle suggestion that if the cancer came back, failing eyesight will be the least of our worries.

And with those few words over the phone, the light and joy seemed to ebb from the room.  I didn’t feel the holidays or the birthdays or anything, really. Just the numbness that comes with sad thoughts and the quiet whisper that has occasionally plagued for three years now: We did this to him.  Oh, how I hate that whisper when it comes at me. And how I wish there were never any threat of guilt in the sadness.  

In the broad spectrum of surgery, this isn’t that big a deal.  In fact, it’s quite routine, so that isn’t the heartbreak.  The part that makes my throat grow tight is that it’s one more.  It’s one more and they’re pretty sure it came from the treatments that saved his life.  

Everything becomes so mixed up in moments like this and the brokenness screams out over the good.

That afternoon, I sat with Chase and we talked about his needing surgery to help his eyes.  As I spoke, he took my hands in his. “It’s okay, Mom, it’s okay. Hey, look at me. When was the last time you smiled? Can you smile for me? It’s going to be okay.” So I smiled through the tears because you have to smile when Chase asks. He’s an old soul, my bald boy. And one more surgery needs to be scheduled with no guarantee that it’ll be the last. And the voice of guilt is never fully squelched; rearing its’ ugly head in the moments of greatest vulnerability. But in this moment, I need to keep close to the things I do know: If God is for Chase, not even a hundred surgeries and complications can stand against him because he is fearfully and wonderfully made and despite the sadness, my soul knows this to be true. Even when I do not feel or see it, God promises that His plans for Chase are good and are lovingly orchestrated to give us hope.

These truths are the only lights that banish the sadness. 

Choosing joy in the pain . . . Moment by moment.

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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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Being A Cancer Mom

This is a post from September 2014 – written especially for the Mary Tyler Mom “September Series” – cancer stories from cancer parents.  It was written within a week of Chase’s bad scan and chronicles some of the difficult, unusual aspects of this journey.

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
My darling Chase

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.]

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