Tag Archives: normal

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.

 

How To Fry Cancer: A Typical Radiation Day

At the time I started writing this post, Chase had completed 17 of his 30 radiation treatments.  He has now completed 22!  These radiation days can be pretty intense and it’s not unusual to start the day in one location (usually home) and end the day in a completely different location (the hospital).  So as you can imagine, these days are never, ever dull.  [sidenote: “Chase” and “dull” are rarely in the same sentence]

Here’s what a normal radiation day looks like … no wait, scratch that.  Here’s what a radiation day last week looked like (we reserve the word “normal” for the days we don’t arrive in an ambulance).

Chase arrives for radiation on the hospital transport. The mask is to hopefully minimize the germs…when he remembers to hold it in front of his face.

There is a beautiful built-in fireplace which runs the length of the waiting room wall (picture a lovely five start hotel lobby) and Chase loves it.  In fact, he refers to the radiation center as his “fire hospital” – not to be confused with his “fishy hospital” (a name derived from the aquarium in the lobby of his primary care hospital).

First, Chase gets his vitals done (blood pressure, oxygen saturation, etc) – which he hates – and then he gets to put a sticker on his sticker chart – which he loves.  The radiation center staff kindly provided a sticker chart tailored to each child so that they can “check off” the days and see the progress they’re making.  Chase’s chart was presented to him with Cars characters on it.  Do they know him or what?

Here’s the sticker chart from around Day #6…

Chasey with his radiation nurse, Roshena. He loves his “Miss Roshena” and I believe he’s actually proposing to her with a plastic ring he found in the sticker box. So classy.

After he’s “cleared” for radiation, we walk to the room he calls his “spaceship“.  This is the time when he’s usually clutching the iPod and listening to/singing with 10,000 Reasons.  I wish I had better pictures of this room.  One of the most striking things is his mask lying by the table.  I can actually see his profile in the contours of the mask and I find myself staring at it every time we go in.

The radiation mask

In the “Spaceship” – the anesthesiologist administers the drug as Chase falls asleep on my shoulder (sorry about the blurry quality – this was as good as we could get)

Almost every day, as Chase falls asleep, he says “I’m so brave, I’m so brave...” over and over to himself.  It took me almost two weeks of this to get to the point where I wasn’t crying as I walked out of the room.

After Chase is asleep, I leave him in the “spaceship” and wait in the lobby.  On this particular day, I had a particularly wonderful “Good Samaritan” who brought me a particularly needed drink.  In other words, my dad brought me coffee.

Thanks, Dad!

After radiation is complete, the nurses allow Chase to sleep off the anesthesia for a little while, at which time, I join him in recovery and once they’re sure he’s stable and alert, we are free to go.  Sidenote: for Chase, “alert” usually means “ninja“.  A side affect of anesthesia for him is crabbiness – which means it takes three people to get him dressed on many days.  A sidenote on my sidenote: when you read that last sentence, please don’t shake your head or cry at the thought of adults struggling with a small boy.  Picture with a small, wry smile on my face as I type because I love his fight and although it is at times overwhelming, his stubborn, ninja-fighting, never-say-die attitude is a perfect God-given match for his cancer.

This day (that I took most of the pictures), we finished it as we’d started: on an ambulance.  Once he got back to the hospital, he was given a little more chemo and then we were able to be discharged!

Back in the ambulance bay and sleeping off the morning – head shining with post-radiation lotion.

…and that is one of our more average radiation days!  (ambulance and chemo not included)

Moment by moment.