Finding Purpose: The Normal, Not-Normal Life

Broken beauty
Broken beauty

For some time now, these words have refused to come out.  The unknown, undefined place we’ve inhabited post-treatment has been crippling to my writing because I haven’t known what I’m writing about any more.  I was reminded this week that life is a journey and my heart is to honestly chronicle my way through it – whatever it may bring.   With that reminder, the words finally came and I could write out the struggle.

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


“His counts are in normal range”; “You can return to normal activities”; “You should treat him like a normal boy”; “Not being in this hospital is good…it’s normal”… Normal, normal, normal

We keep hearing this word; they keep using this word; but to quote the great Inigo Montoya: “You keep using this word.  I do not think it means what you think it means.”

I look at Chase – at the scar, at the hair that’s trying to grow past radiated skin.  I watch him – how he struggles to hear a whisper even when we speak directly in his ear, how his mood swings, how his words jumble and garble.  Excuse me for sounding skeptical, but this is normal?  Do normal children have to have medical clearance from teams of specialists just to get their teeth cleaned?  (a true story of how several hours in my week went down)

I remember clear as day – sitting on the couch in his PICU room in the dawn before brain surgery and wishing for normal.  I confronted that wish and had to put it aside.  “There is no normal.  There is only Christ.”  And now normal is being handed back to us…and it’s terrifying.

My brain whispers that Chase could have been dead.  He could have been unable to walk, unable to speak, unable to do a hundred other things.  My thoughts turn to all that could have been and all the cancer children who have stopped breathing since Chase was diagnosed and I can hardly breathe myself.  The anger and frustration flares… How dare I ask where we are and where we’re going?  How dare I?  What right have we to wonder?  Is it not enough that we’re the ones who still breathe?

But we do wonder.  It feels thankless and rude, but we do.  We are beings created for a purpose and we chafe and fight against this normal not-normal life that at times feels so purposeless.  We no longer belong to the world we inhabited pre-diagnosis.  Those people have been ripped apart and rebuilt time and again with new eyes, hearts and focus.  But we no longer belong to the world we inhabited during treatment.  How do we use our changed lives?  Where do we belong?

The truth is that I don’t know.  I believe that the answer is something that is still unfolding.  And while it unfolds and we wait with hope… this:

For we are his workmanship, created in Christ Jesus for good works, which God prepared beforehand, that we should walk in them.  Ephesians 2:10

We were made by God for good things.  Good things that He planned for us to do long before we ever breathed.  He planned them for us, so we can’t miss them or mess them up.  He planned them.

Breathe.

There is a plan.  It won’t be normal, but it will be good.

And we’ll take it moment by moment.

 

The Little Big Things

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When you have a 6cm brain tumor removed at 2.5 years of age and go through months and months of rigorous treatment, all bets are off regarding development.  Often, you hope for delays “at best” as the worst is too hard to think about unless forced to do so.

Last night, I sat across from Chase as he made valiant attempts to match and fold his favorite yellow hospital socks and this morning, as he placed another Superman sticker on his “potty chart” I stopped and I marveled.  These things are small and normal milestones to most children, but for Chase, and for all cancer kids, some of these things are beyond huge.

You see, it wasn’t too long ago that teams of doctors waited post-surgery to see if he’d even wake up…or talk…or walk.  Celebrating these little big things today.

Moment by moment.

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Do You Hear What I Hear?

Wires in his ears
Wires in his ears

I’ve written about Chase’s lack of hearing before.

The tiny room…

The sounds I can hear that he doesn’t…

The frustration in our home as he calls and calls desperately across the house, never once hearing us answer…

Since his doctors surgically cleaned out his ears, the intense frustration has seemed to improve a little.  Now, he seems to be able to hear a voice from across the room, but perhaps that’s just wishful thinking on our parts.  After all, we know the collateral damage we signed on for when we started this journey.

Stimulating his hearing through his skull - fearful and wonderful
Stimulating his hearing through his skull – fearful and wonderful

And yet…

Today, as we wrapped up the audiology exam, she sat down and smiled: “I don’t usually get to tell people this, as it often goes in the other direction, but…his hearing has actually improved!”  The procedure performed in November (when he was under anesthesia for his MRI) was successful and his hearing is within normal ranges in several areas.  His high frequency hearing is still classified as “poor“, but even that has improved from the “unresponsive” conclusion on his last test.

Even as we both celebrate these results and wonder about the results in six months time, I am reminded again of these words…

Chase doesn’t need perfect hearing to hear the voice of God.

Thankful.

Moment by moment.

He feared the giant headphones and we told him that he looked like an airplane pilot :)
He feared the giant headphones and we told him that he looked like an airplane pilot 🙂

One More: The Last…

Poison

This afternoon, I received the call I’m always waiting for – the first of the twice weekly lab results.

This afternoon, I received news I’ve been waiting to hear for 14 months – “Chase’s counts are coming back, and quickly.  We’ll repeat labs on Thursday, but barring anything really crazy, he should be ready to restart chemo on Monday. This is it!

This is it.  The last chemo.  The last spinal tap.  The last

A small part of me is choking as I’m writing “the last“.  The part of my brain that reads and absorbs cancer research is screaming “The last?  You know better than that! This cancer is never over!”

But tonight, for now, for next week, it’s the last.

Joy.

I can’t believe we’re actually at this point.  And for all the rest that we have yet to walk, we’ll take it as it comes…

Moment by moment.

It is the Lord who goes before you. He will be with you; he will not leave you or forsake you. Do not fear or be dismayed.” Deuteronomy 31:8

Two More

Chase’s counts are finally recovering from his last round of chemo!  Yesterday evening, we received word from the hospital that he has been cleared to come in on Monday.  His levels aren’t exactly where they should be, but are very close.  It is our hope that his Monday labs will reveal he’s fully recovered and that he can be admitted for the week.  We don’t hope this because we love chemo, but because Chase only has two chemo cycles left!  …and then he’s done!!

We would so appreciate your prayers as these last rounds are, in many ways, the most difficult.  The protocol doesn’t change, but his body is exhausted and each round seems to take it’s toll quicker and more painfully than the last.

Moment by moment.

My darling Chase
My darling Chase