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.  

FullSizeRender (24)

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.

What If I Go To Sleep And Don’t Wake Up?

Chase settled a little further into his pillow as I tucked the sheets up under his chin, just the way he liked it. He had been laughing a second earlier and it suddenly changed to a whimper. “I’m scared . . .”

I tousled the fuzzy hair on his smooth head, “It’s going to be okay, sweet boy.”

He twisted slightly in the sheets as if trying to physically escape a thought. “But Mom, what if I go to sleep and I don’t wake up?”

I hugged him close and promised him that wouldn’t happen – not because I knew it to be true, but because I desperately prayed it so. How the old soul questions from a young body twist at my heart and mind.

It takes four people to hold and distract Chase while the needle is placed in his arm.
It takes four people to hold and distract Chase while the needle is placed in his arm.

Twelve too short hours later, after fourteen hours of fasting and four attempts to place an IV in his under-hydrated veins, he fought the medication as it sought to take hold, pulling his head off the hospital bed to draw breath against the impending sleep even to the point that he nearly choked. His eyes closed and he fought them open once again. His voice was a hushed whisper as if even opening his lips to form words took too much energy. “Mom, I’m going to miss you. Will you come back to me?” The fear in his eyes was still visible in the blank glaze of the pre-anesthesia prescriptions.  And then his chest heaved in a gigantic sigh, and he surrendered.  And I stood in the bay next to Bob, watching nurses and doctors prepare to load his small body into the colossal machine until the automated entrance door closed, separating all of us once again.

We don't like needles . . .
We don’t like needles . . .

Yet another MRI . . .

Today marked Chase’s first MRI in four months and the first one since his diagnosis that I haven’t posted about before it occurred. It was traumatic as it always is and for a moment after the holidays and the busyness and burnout, I lost the ability and desire to put it into words. At some point, it feels like we run out of new ways to say “this is hard” and “please pray”. Every time he passes out and we’re left standing in a room, every last time we say goodbye, it tears at my heart and the weeping soul cry of it all is that we weren’t meant for these kind of things.

It’s hard now, and it’ll probably be equally difficult when we do it all again in three or four months or possibly sooner with an impending eye surgery. And wow, is my weakness and lack of faith on the surface in these moments when I stand separated from Chase and consider doing it all again. We never, ever outgrow the need for moment by moment grace, no matter the circumstance.

Sleeping off the medicines post-scan. He's awake, but was too tired to respond to anything - even a picture.
Sleeping off the medicines post-scan. He’s awake, but was too tired to respond to anything – even a picture.

Oh, but I’m so thankful to be able to bring you the hard and the good all in one, for within a few hours of the nearly two hour scan and recovery, we met with Chase’s neurosurgeon and learned that preliminary results showed negligible growth in the tumor site. Of course, we wait on the final consensus of the other teams and tumor board, but we are so blessed to share that at this point, Chase is stable

Moment by moment.

Weeping may tarry for the night, but joy comes with the morning. Psalm 30:5b

Post-procedure had Teddy Grahams - the best way to break a fast, of course :)
Post-procedure had Teddy Grahams – the best way to break a fast, of course 🙂

On Being An Ambassador

Summing up a whole year is often like visiting a medical office for me: a dreaded, but sometimes necessary exercise.  I hate the action of listing it all out because it can be so trite to gloss over and wrap up, but as soon as I start, all the painful, awful, funny, perfect, and wondrous things that have passed start washing over me and I never regret the exercise.  One of the most amazing aspects of this last year has been Chase’s role as a national ambassador for the St. Baldrick’s Foundation, and this morning, in the last of the 8,760 hours of ambassadorship, we sat down early to reminisce over some of the opportunities: shaving his brother’s head, going into schools to meet with children and talk about cancer and chemo, getting to connect with so many people on something that has shaped us on such a significant level – to name just a few. 

Memory is hard for Chase and he slumped down in the chair as I asked him what his favorite part of the ambassador year has been. “Can’t I just say that I love Dr. Lulla? He’s my favorite. Can I just say that?”

Chase with Dr. Rishi Lulla, a St. Baldrick's researcher and Chase's attending neuro-oncologist at Ann and Robert H. Lurie Children's Hospital of Chicago.
Chase with Dr. Rishi Lulla, a St. Baldrick’s researcher and Chase’s attending neuro-oncologist at Ann and Robert H. Lurie Children’s Hospital of Chicago. Photo credit: Jan Terry

“What about the time you made Aidan bald?” I laughed.

FullSizeRender (1)

He slumped further. “Please don’t laugh about being bald. It hurts me.”

Reaching over, I picked him up and hugging him close, I explained that my laughter stemmed from his and Aidan’s precious hearts for each other, not their lack of hair. Never the lack of hair.

Photo credit: Heidi Peters Photography
Photo credit: Heidi Peters Photography

And then he settled into it. “I did like shaving Aidy’s head. That was fun. And I really liked doing the Pin Guard tournament with Miss Jen at school with the firemen. And I think I liked whenever they gave me a microphone to talk to kids too. Those were my favorites.” He stopped and thought for one minute more, and than as is his habit, he interrupted his own musings. “Also, I think that . . . Hey, Mom! I have a great idea! I want to make cards for kids who have cancer and chemo like me! The next time we go to my hospital, can I take cards to my friends like my Mia and my Lucas?”

And with that, the time for memories were over.  But isn’t this the point of sharing our stories? Of being an ambassador? Reflection that leads to action. For Chase, in this moment, it was wanting to encourage other kids.  And over this past year, as more and more have looked to encourage and action has been taken – from grade schoolers growing out their hair all the way to a US Congressman signing the STAR Act – thousands upon thousands of dollars have gone to change the outcomes.  This is amazing!

Talking about St. Baldrick's at Madison Elementary
Talking about St. Baldrick’s at Madison Elementary

As 2015 comes to a close, we acknowledge the hard things that have brought us to this point, revel in the joy that keeps us going, are deeply thankful for all the ones around us, and look expectantly to 2016 for all that it will hold.

A huge thank you to the St. Baldrick’s Foundation for letting us help carry your message this year.

Photo credit: Heidi Peters Photography
Photo credit: Heidi Peters Photography

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

congressman-roskam

12.12.15

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