Family – Page 10 – CHASE AWAY CANCER

Too Many Shirts

He scrunched up his nose, the stronger side of his face muscles causing lips to curl angrily on one side. “Bof of them!” This did not bode well.

Some days, Chase is an old soul with wisdom that brings me to tears. Other days, he has the logic and reasoning of a three-year-old, trapped in a body the size of a four-year-old, with the most of the physical abilities of a six-year-old. This means that discussions of any kind are often like trying to hit a moving target. At any given moment, he might need a pat on the head, a “quiet time”, or a higher-level discourse.

On Sunday morning, I laid out his clothes for him and went to iron Bob a shirt. Moments later, I returned to find Chase standing in the middle of the living room, his pants bustled and messed across the back where he’d failed to pull them up properly, and on his torso, he wore an undershirt, the shirt I’d laid out for him, another equally heavy long-sleeved shirt, and as I encountered him, he was attempting to frustratedly stuff his bulky arms into a navy zippered sweatshirt.

His forehead was already beginning to glisten under the furnace of clothing he’d heaped on his body and he was so mad at not being able to get his arm in the sweatshirt that I could tell he was seconds from pitching it across the room with a scream. And now, here I was gearing up to come at him with the sad truth that he couldn’t wear all the shirts in his drawer.

I hate when I know I’m right and for his own good, I need to intervene. Before I even start, nearly every time, there is the pricking sensation that it’s going to be an A++, super guaranteed, completely pitched, blood and guts battle. And on a Sunday morning too . . . because nothing says “getting ready for church” like a family fight.

Kneeling down, I started in, “Chase, honey, what happened? Why do you have all those shirts on?”

Sometimes it’s easier if I don’t assume and let him tell me in his own words, but this part takes time. And how I hate to take time.

He looked up at me simply. “Because I like them all.”

Fair enough. “Well then, why don’t you save one for school tomorrow? You may not wear both this morning. So, which is best for church? The gray one with the green sleeves, or the brown one?”

His voice grew insistent as he sensed my purpose. He would have to sacrifice at least one shirt. “Bof of them.”

“I’m sorry, Chase. That wasn’t a choice. You can wear one or the other, but not both.”

“Bof! Of! Them!” His voice raised to a scream and he played his trump card (which is only ever true about 50% of the time). “Daddy says bof of them!”

Bob’s voice came from the kitchen. “Chase, that isn’t true.”

“Bof of them! Bof of them! BOF OF THEM!!” His voice was a scream, his face red as his lips curled oddly around the “f” he substituted for “th”.

In moments like these, I want to get down on his level, and down in his face and say the four words that are always on the edge of my mind: “Because I’m the mom.” How I want to force obedience out of him as if it’s waiting to pop through just below the stubborn surface.

But at its core, the argument isn’t ultimately about his shirt, though he would have to remove at least two. At it’s heart, the argument is about all of us. Damage or not, our need to be right – to get our own way. As I looked at the “tiny” bald boy stomping his foot in anger, I found that I secretly wished him to respond better than I would have in the much the same scenario.

So often God confronts me much as I stood before Chase: Ellie , will you follow what I’ve laid out for you? I see the harm in this scenario that you do not. You can’t love me and these other things too . . . you must choose one or the other. There is sacrifice, yes, but my way is greater than you can wrap your mind around right now.

[mental angry foot stomp] No God, I want both of them! All of them! Why can’t I have everything? If you really loved me, you’d let me have what I think I want.

In the end, Chase only wore one shirt to church, the argument was diffused, and we all survived, but sometimes, in the myriad of daily battles, I find these rare moments of backing away to see my own heart in Chase’s stubborn stance. Many times, so many more than I’d like to consider, I fail miserably, but in those brief flashes of heart, I grasp just a hint of God’s loving patience with me…

…moment by moment.

For I know the plans I have for you,” says the Lord. “They are plans for good and not for disaster, to give you a future and a hope. Jeremiah 29:11

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.

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.

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 🙂

Category: Family

Too Many Shirts

Scars and Justice

The Past, The Present, And A Virus

Being Still

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

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