Tag Archives: beauty

Of Wheelchairs And Joy

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Her life as she knew it changed forever when she was 17 and she has faithfully used the crazy hard changes for truth and beauty and just recently, the children and I had the great privilege of actually meeting Joni Eareckson Tada.  I watched their faces and they were afraid to get too close lest they hurt her – they have yet to fully understand her wheelchair and it’s reasons – but she smiled at them and encouraged them to come closer and they couldn’t resist her joy.

Do you know her story?   It’s real and it’s raw and she’s a hero of mine because she never stops seeking the goodness of God when all the life circumstances are anything but.  Knowing her story, listening to her speak, reading her writing – all of it – is such a wonderful reminder that the day for no pain and tears is coming.  It is not today, but it’s coming, and God remains faithful while we wait.

Moment by moment.

“There is no circumstance, no trouble, no testing, that can ever touch me until, first of all, it has gone past God and past Christ, right through to me. If it has come that far, it has come with a great purpose.” – Alan Redpath

[This quote is a favorite of mine and is listed among Mrs. Tada’s favorites as well.]

 

Catching Up On Perspective

As I break my non-blogging streak and think about the last several weeks, I find myself reflecting on perspective.  I will get to that in a minute…

On March 25, Chase had his ear surgery.  We don’t yet know how successful it was (he will have a follow-up hearing test at the end of May), but as we sat in post-op, he turned to me and said “Mom! I can hear!”  I cried.  His expressing this was all the more amazing because we had prepared him for putting tubes in his ears, but we didn’t set him up for any results.

That moment in post-op

That moment in post-op

PoisonWe finished four days of chemo on Thursday of that same week and just as we were so close to discharge that we could practically taste it (if hospital discharge orders were something you could eat), Chase spiked a fever and we had to stay for several more hours until the staff could better understand the cause of the fever.  Such are the hazards of having a central line.  We were finally discharged late that evening.  Chemo

Because we had spent those extra hours getting blood cultures and antibiotics started, when Chase spiked another fever around 3:00AM on Friday morning, it resulted in a simple phone conversation with the (incredibly gracious) oncologist on-call and not a summons to the emergency room.

That Saturday (the day before Easter), Chase again spiked a fever and by this time, his Thursday cultures needed to be redone and so we were sent to a local emergency room for blood work and more antibiotics.  A small part of me wondered why he never seems to get fevers in the middle of the morning.

Chase was mercifully discharged from the local ER around 12:30AM and we all got some sleep and were fever-free enough to go to church together on Easter Sunday morning.  One word: glorious…and refreshing…and encouraging (Okay, more than one word…because it really was that precious).

Happy Easter

Happy Easter

As we drove home from church, I glanced at my phone’s call log and saw the (way too) familiar area code…I had just missed a call from the hospital.  “There was a bacteria found in the culture from last night.  It’s in both lines and it’s growing fast.  I’m not saying you have to drop everything in this moment, but we need you to get Chase here sooner than later…and make sure to pack…you’ll be here overnight.”  …and just that quickly, the holiday was over.  We’d managed to stay out of a hospital for a whole twelve hours.  As we pulled out of our driveway minutes later -still in our Easter finery with our hastily packed bags- and we waved goodbye, I felt a weight descend…it shouldn’t be like this.

In the ER on Easter

In the ER on Easter

Chase cleared his infection (the origin of which was never completely known) and we were discharged within a couple days as he had no more fevers.  In fact, he was the only one in our family who stayed healthy as all the other kids went down with a high fever virus that lasted for several days.

During the same period, Chase’s counts dropped from the chemo and we were back in the day hospital for transfusions.  Chase was in isolation, but did have the privilege of meeting Chicago Blackhawks captain, Jonathan Toews.  Chase tried to offer him a basketball.  To Toews’ credit, the professional hockey player was very gracious.  That same day, the son of a dear friend was in surgery at the hospital.  Putting aside a long story for another blog full of interventions and orchestrations; if we hadn’t been there for transfusions, we would have missed a great moment to serve and encourage our friends.

Meeting Jonathan Toews. Note the basketball in hand. :) [photo courtesy of the Chicago Blackhawks Facebook page]

Meeting Jonathan Toews. Note the basketball in hand. :) [photo courtesy of the Chicago Blackhawks Facebook page]

Transfusions complete, we waited for days…just waiting for Chase to get hit with the virus that all the other kids had.  Then, we got a call from his nurse saying that they were all surprised to find out that he’d recovered from the chemo much sooner than expected and he didn’t need any more transfusions.  Translated: we could stay home and rest.  The worst of the cycle was over.

We rested all week and then returned this past Tuesday for the big, under-anesthesia, check-the-whole-brain-and-spine MRI.  After three months, was the cancer still staying at bay?  Would there be a recurrence seen in the pictures?  No.  We have yet to discuss the scans in detail (we will see the pictures on Monday in clinic), but the bottom line was this: things look good.  Chase’s attending neuro-oncologist said that this is what is hoped for and desired.  Another clear scan.

…and to this day, Chase still hasn’t gotten sick.  The doctors believe that the antibiotic he was on for his line infection protected him from all the germs in our house.

So, if we hadn’t had the fever before we left the hospital, we wouldn’t have been able to stay home on Friday, and if we hadn’t gone in on Saturday night, we wouldn’t have been able to be in church on Sunday morning, and if Chase hadn’t had the line infection (which caused us to miss part of our Easter holiday) at all, he would never have been protected from the flu and pneumonia in the house.  …and if he hadn’t needed transfusions, we never would have been  there for our friends and been able to connect with some really cool Blackhawk fans.  Some correlations are more obvious than others and for some things (like the scan) there is little correlation at all; just joy.  But for the rest: perspective.  This season continually reveals to me that what seems sad and wrong often leads to visible grace and beauty.

As I look back on these weeks, how will I choose to remember them?

“All around

hope is springing up from this old ground

Out of chaos life is being found in You.

You make beautiful things.”  -Gungor

Moment by moment.

Healing In The Tears

The last couple weeks have been such a blessed break in many ways.  Although Chase had chemo, it was so light that he didn’t need a single transfusion!  These more “normal” days with no hospital are full of nothing and everything.  I find myself actively being a wife and mother, nurturer and teacher in a way that I haven’t in months, but I’m also finding myself often in last summer.
I’m so thankful that I was cautioned by another cancer parent or this preoccupation would have taken me completely by surprise.  The first days and months with cancer have been so intense and involve the daily fight to live and breathe on such a level that its only when I stop that I have the luxury to reflect…and feel.  The misleading thing in all of this is that I truly believe that I have felt and thought and processed as we’ve lived each second, but it’s somehow different…even more traumatic at times.  Flashes of memory often tear into my daily moments…

…that summer moment in our front entry way when I first saw Chase’s hand tremble uncontrollably

…the change in the brash ER doctor as he (with tears in his eyes) said “It isn’t good. There’s a very large mass.”

…watching the city street disappear out the door window of the ambulance as we pulled into the bay at the children’s hospital and thinking “I’m on the inside now…never on the outside of this life again”

…Bob calling me from the EEG room: “Chase is seizing almost constantly. They’re moving us to ICU. Somebody is coming to get you.”

…drawing my knees up and wanting to curl into a ball in the tiny, dim conference room as the neurosurgeon ripped our breath away with words like “malignant” and “tumor cells everywhere

…seeing my baby again for the first time after surgery and hurting for him as he -bloodied, swollen and covered in monitors- rose to his knees in the bed and angrily screamed “I want my Mommy! I want my Daddy!” and the doctors and nurses sighed in relief that he could move and speak and know and I swallowed the guilt of not knowing how to touch him and comfort him with bloody stitches covering the head I had kissed every day…

Hours after surgery

Hours after surgery

These and many others are the litany of pictures and sounds and feelings in my brain that I believe will smooth and gentle with years, but know will remain imprinted until I draw my last breath in this broken world.

This is my daily battle: to acknowledge what has been while breathing in whatever normal is now, and still entrusting to God that which is yet to come.

I will never be able to leave these traumas, but I can control how they shape what is ahead…

“I wonder too…if the rent in the canvas of our life backdrop, the losses that puncture our world, our own emptiness, might actually become places to see. To see through to God. That which tears open our souls, those holes that splatter our sight, may actually become the thing, open places to see through the mess of this place to the heart-aching beauty beyond. To Him. To the God whom we endlessly crave.” Anne Voskamp, One Thousand Gifts

Yes.

This.

My hurt memories push at it, but my soul cries for that Grace and Peace that is the only answer in all the broken.  This that I see even in the pain…at times more clearly in the pain.

And so, I move forward…

Moment by moment.

The night before surgery: monitoring the seizures

The night before surgery: monitoring the seizures

Dinosaur Poop And Life Lessons

This morning, a couple volunteers stopped by our room to check in. One volunteer brought blocks for the bed-bound, wiggly Chase, and the other volunteer brought a chunk of poop.
Yes, it’s true! This volunteer is a retired archeologist from The Field Museum who brought a chunk of fossilized dinosaur excrement for the kids to see and touch.
As I held the brownish rock in my hands, I turned it upside down to view the smooth, polished surface of a man-made cut. Imagine my surprise at seeing what looked like a beautiful crystal inside!
Given time and refining elements, something that was complete excrement is now a thing of beauty.
Call me crazy, but I suddenly felt like I was holding cancer in my hands… This life season that feels like nothing but poop, will in time, polished by the elements and circumstances, become beautiful.
I laugh at myself gathering deep insights from waste, but I am in awe of the timely reminder over the hospital bed.
Moment by moment.

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