Being Still

“We have working hands.”  

I grew up believing that the busy person is the most productive person and being still should not come until all the work is done.  All of it.

How I love it … And how it kills me a little every day when I fall terribly far short of all that needs to be done.

One afternoon not long ago, I stood at the front window, looking out over the front yard. A small boy in his puffy blue winter coat and red Spider-Man hat methodically lifted chunks of snow and ice off the grass, stacking them neatly in a pile on the sidewalk.  

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My daily routine suggests that the kids should get off the school bus, unpack their back packs, do any necessary homework or house chores, and then we stop to take a breath.  My joy is in the “getting it done”.

Whether it’s personality, brain injury, or both, Chase can’t always handle the constant movement and input that comes with my style of productivity.  To him, it is a vicious bombardment. And in those times where his brain shuts down as my parental arrogance revs up, the two of us struggle over every single thing.  My home becomes a battleground littered most pointedly with aborted teachable moments. 

So, that afternoon, when he asked me if he could play outside after the bus pulled away, I could feel the struggle. I wanted him to come in and keep going. I wanted to be somewhere other than standing at the window watching to make sure he was safe and well. I didn’t want to be still. But I said yes.

This is one way Chase helps me.

Because of who he is and how he best functions, I am forced to weigh down the moments and consider each interaction so very carefully — even more than I do with my other children. (though in all fairness, I should do it with them as well)

Do I ask Chase to do something because it is right, or do I ask him to do something because it is right for me?

Productivity is wonderful, thoughtful dialogue and parent-child boundaries are so necessary, and there will always be moments when we’ll need to do battle, but that winter afternoon was not one.  For my desire to say no stemmed not from his best interest, but from mine.

So I stood at the window with my tea, taking a deep breath and actually looking around me as I stepped out of the hurry for a time.  And then he looked up at me and grinned and I could see that what had felt like a compromise to me had actually been a great victory.  

Sometimes being still is the most active thing we can possibly do.

Moment by moment.

Speaking The Struggle

Good morning! I’m over on the St. Baldrick’s Foundation blog this morning, talking about Chase’s amazing meeting with Rep. Peter Roskam earlier this fall.  Join me to read what the US Congress heard about Chase!

Here, I’ll get you started… click on the link below for the full post:

“Over the years, there have been long days and trying times that I want to get up and shout, “This is so hard!” Times when I want to pull out the soapbox for what affects my family, and talk about the lack of funding for childhood cancer research.

Most days, I don’t shout our struggle because we all have something to shout. We all struggle.

Which makes it all the more precious when someone else steps in to shout it for you.

One September morning, I sat in a school gym. The whole family sat in metal folding chairs forming a small arc against the front wall, while hundreds of children and teachers sat on the floor facing us.

The principal stood to welcome everyone in her beautiful red shoes. As she spoke, there was a murmur of activity in the hall outside the gym, and the crowd gathered at the doorway parted for a single, quiet man…”

http://www.stbaldricks.org/blog/post/illinois-representative-peter-roskam-recognizes-ambassador-chase

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For years now, Chase has fought me on his age. On some level, the last year he remembers well is the one he turned two, right before the tumor. For years now, as I’ve told him the next numbers, he’s insisted that he was still only two.  I finally got him to admit to five, but it’s usually a fight.  But just last week, he came and plopped down next to me on the couch. “Mom, I’m ready.”

“Ready for what?”

“I’m ready to be six. I know it’s six now and I’m okay with it. I’m ready.”

I smiled and kissed his fuzzy head. “That’s great, Chasey-bear.”

“And Mom, after that, can I be seven and then eight and then nine?”

Yes, a thousand times, YES . . . please.

Today, my precious, stubborn, tenacious, beat-the-odds, stare-it-down, never-say-die, don’t-mess, you-and-what-army Chase turns six with great joy.

And I’d love to reflect at greater length, but the present is waiting right next to me and the present has his birthday crown on and he’s begging me to open gifts. He asked me to share that he’s “thankful for Bapa and chicken and that he likes his birthday and his presents.”

We are so thankful for another year of life . . . moment by moment.

Photo credit: Tracey Rees

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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