Tag: trust

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.

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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

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.

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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.  

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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

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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Chase On His MRI [VIDEO]

The sun is only hinting pink when I feel another presence on the edge of the living room.  This is what he does, my early-rising boy… He wakes before it’s light, tip-toes out to wherever a parent can be found, and stands quietly, thumb in mouth, waiting for someone to see him and call him into the light.

Still rumpled and rosy from sleep, mismatched in his Lightning McQueen bottoms and a shirt that announces “I fight cancer. What’s your superpower?”, he jumps onto the couch and snuggles close.  His talk turns to the subject that has been plaguing him for about a week now: the upcoming MRI.

The questions come as they do every day; several times a day: …When is my MRI? Will there be ‘beeping’? Will I have a needle? Can I eat? Who will go with me? Will you come back to me?…  They come with heartbreaking regularity and the answers are always the same.  In a life that’s anything but predictable, he can at least rely on the same answers to these small questions that are so very big to him.

In a day, he’ll wait in pre-op for almost two hours after having gone nearly half a day without food or drink.  They’ll lull him and then hold a mask over his face while he lays on the threshold of the machine with no parents in sight to say “It’s okay, sweet boy.” And while he sleeps, they’ll put a needle in his arm to keep him hydrated and inject dyes and he’ll be in the machine for nearly two hours – the only blessing: he’ll be mercifully unconscious.

You hear from me on this subject early and often, and in the last part of the last year, it was often-er than not.  My words hardly change…we can’t, we must, we wonder, we shouldn’t, God is good.  Always.

So today, hear Chase.  He’s about 24 hours away from a big MRI and he’s scared.  He also wasn’t sold on the idea of a video until I promised him that he could hold his father’s tape measure.  This is what the early morning and late nights look like…the twisting mouth, the working to remember words, the thinking about mosquito bite scars on top of his skin rather than the potential of cancer growing under it.  He’s part boy, part wise far beyond his years, part broken by his treatment and tumor…and he’s all Chase.

Moment by moment.

*Note: His last words are “I want Mrs. Schneider to pray for me.”  That is the name of a dear friend who -because Bob needs to work tomorrow- will be accompanying us to the hospital so that I don’t have to be alone on MRI day.  Chase knows that while we can’t be with him, Janet and I will be praying for him in the waiting room while he’s in the MRI. 

On The Unknown Road

The cold snapped in the air as the sun shone distant and too bright through the windshield of the car as we traveled along the road.  Chase’s first day of therapies.  A new building, new people, new things to be learned…the start of a new chapter.  And with the new, came the old and familiar: the fear of the unknown and the question – what lies ahead?  Always that question.

Chase’s high voice pierced the questions gripping my mind like my hands holding the steering wheel.  photo 2 (1)“Mommy? Where are we?  This is not the road to my hospital.”  For this is how Chase tells direction.  There is the road that leads to his hospital and then there is every other road ever made.  I answered and assured him that this road was a good road and that it was the way to his new therapy – therapy that would help him grow strong.

Silence followed for a brief second as he processed what he’d heard.  Then; “But Mom, are we late?”

“No, Chase.  We aren’t late.  We are right on time.”

Another moment of silence, then his voice again, this time with anger, “But Mom, this isn’t the road and we’re late!”

Steeling myself for the familiar exercise of reasoning with the irrational; I responded: “Chase, this is the road and we are not late.”  I received nothing but an angry growl and the reiteration that I was in error.

How many times would I need to speak truth to him before he heard?  

Finally, this; “Chase, do you trust me?  I know this road and I can see the clock. I know where we’re going and I know that we’re not late.  You don’t know this road, but I do.  I’ve driven on it before and I know where it goes.  Chase, you’ll just have to trust me.”

The petulant retort; “Mom, I can’t trust you because I cannot see the road and I cannot see the clock.  You can; but I cannot.”  

Suddenly, his voice was mine….mine to my Creator who speaks truth to me and calms the questions and fears at every turn.  He tells me that even though I don’t know the road, He does.  He knows where it goes and what’s along the way.  He knows the timing of it and how it will take me to places that will be hard but will make me stronger.  And I sit, petulant child that I am, and question trusting Him because I don’t know what He knows and somehow, in my small heart and mind, that makes Him seem less good and my fears seem more justified.

In that moment, that silly short moment of driving across the city, in the child voice from the back seat, I was reminded how good He is to me and that I don’t have to know what lies ahead to trust and follow.

Moment by moment.

For I know the plans I have for you, declares the Lord, plans for welfare and not for evil, to give you a future and a hope.  Jeremiah 29:11

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