Chase – Page 11 – CHASE AWAY CANCER

Scars and Justice

He walked into the room and sighed loud and long, his little way of reminding me that he was here and waiting to be noticed.

Turning from making the bed, I acknowledged him.

“Hey, Chasey-bear, what’s up?”

With hands at his sides and head lowered, he spoke the words, “Today on the bus.”

I waited for a second and when nothing followed, I bent into his pattern, pieces of a sentence stated, pieces of a sentence repeated. This is his way. “Today on the bus?”

“Yes. Ian and Aden.”

“Ian and Aden?”

They said I was short and they made fun of me for being so tiny.”

I stopped still.

How do you react when you want to be justice for your children and it’s already too late?

The words were already said and heard. “Oh sweet boy . . . what did you do? What did you say?

He hung his head, but his voice was steady. “I did not yell and I did not scream.”

“Not even a bit?” I tried to see his face.

“Nope. No screaming.” He put a hand to his chest. “But my heart.”

“Your heart?”

His dropped again. The single word burning as he spoke: “Hurts.”

Some days the truth is not spoken lovingly, but hurled like a weapon and it stings.

How do you prepare a child to stand strong when all that makes him beautiful stands out differently from the children around him?

It will take a great deal of strength to meet these thrown words with grace. And he will need to do it often, I’m sure. I’ve seen how the other children look at him on the playground, and I hear them ask simple and honest “Why doesn’t he have hair like us?” They cannot know that their simplicity is painful because it’s complicated for us.

It’s funny how we want to be proud of our scars, but we’re still keenly aware of their unique quality and it bothers us. It’s too easy to compare, come up short, and sometimes even lash out as we feel our own differences.

This day, Chase succeeded. He did not scream – a huge victory for my small boy, I know. There will be times to speak up, but this day, it was better to be quiet.

And at the end of it, I don’t care how far off the ground his head stands; he can hold it high because he did the right thing.

Moment by moment.

The Past, The Present, And A Virus

Chase is not known for sleeping. Since the time the tumor first started growing when he was two, he often struggles to fall asleep at night and wakes long before the sun. From the moment his feet hit the floor, he’s going, doing, and often messing around.

When he got off the bus on Tuesday afternoon, he didn’t ask to play outside, but came in quietly, telling me he loved me and missed me. Don’t get me wrong – a docile, loving Chase is wonderful, but it’s also unusual. Most often, he walks to the door fighting to stay outside with a verbal list of all the things he wants and needs to do as he hits the front stairs. That night, as we sat down for family reading time, he laid his head on my lap and fell asleep . . .and then he slept ’til 6:30 in the morning. When he woke, he did not speak much, but went back to his room almost immediately, laying curled in a blanket on the end of the bed. Within minutes, he was asleep again.

My philosophy in a household of small children (read: boys) is “Fear The Silence” because it usually brings no good, and for Chase, this holds ten times as true. He is never still unless something is wrong. This child who sat at the breakfast table next to siblings without eating or talking – for twenty whole minutes – he looked like my child (only more pale), but I couldn’t find the pulse of his personality and that was terrifying.

Is there an increase in pressure within his skull?

Is something growing?

Is his speech changed?

Is he unsteady on his feet?

Does he seem cognizant of his surroundings and memories?

Could his hemoglobin have dropped?

Is he having any muscle tremors or signs of seizures?

Does his head hurt?

These are just a few of the well-worn panic paths my brain circles as I move into the routine of checking his forehead, looking down his throat, and asking where it hurts.

It’s quite likely that Chase was just under a hint of a virus. That’s another part of who he is. The other kids get crabby or possibly lose their appetite when they get sick, but Chase . . . Chase gets “neuro”. His speech and sleep patterns change and he often grows even less tolerant than normal – all over something as simple as a runny nose.

And me? I worry. That is my damage. I may stand still and breathe deep, but in my mind, I’m all-out sprinting across nightmare trails. The years old sentence: “There’s a large mass” opened the gates wide to every conceivable worry – and often with good reason. So once again, I ripped into the past to justify my present and by 9:00 in the morning, I was mentally on the ground, gasping for a saving thought or grace.

“Be anxious for nothing” – Yes, it’s in the Bible and sometimes I don’t know why because sometimes it feels unmercifully impossible. But like every other word in there, it has purpose and it cheers me greatly to think that God put it in there because He knew we’d struggle. And how I struggle.

This morning, Chase beat the sun by a good half hour and was back to his doing, going, and messing self, boarding the bus with a smile. It was most likely just a little virus.

And for me, there’s the quiet, hard knowledge that there is no end in sight. At this point, the only best cure for cancer and worry is heaven. I’ll probably go back to his diagnosis every single time something is even slightly off and I’ll worry myself up until I’m panicking on the ground again and hate myself for it.

And then I’ll need to hand it over once again, give it up to God who knows and loves, and wait in the grace of the . . .Moment by moment.

“Surely your goodness and unfailing love will pursue me all the days of my life.” Psalm 23:6a

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.

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

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.