Tag Archives: thankfulness

Someone To Know Me

He’s afraid of almost nothing outside the hospital, but he hates change like the plague.  I mean, knock-down, drag-out, hates it straight up.  One time I changed his bed without telling him and he lay on the floor and screamed until I could persuade him that new sheets weren’t the end of the world.  And I tell you truth when I say that I’ve just gotten him to wear shorts in the warm weather and not steal his winter hat onto the school bus in the June 80 degree days because he doesn’t remember wearing shorts last summer and all he has in his memory are long pants and winter coats.

Everything I’ve ever read about a brain hurt by surgery and tumor says this is not uncommon.  It takes longer to adjust and more to cope and the little things are always very, very big.  If there’s no mental paradigm for something, it’s usually treated with anything from caution to outright hostility.

Three weeks ago now, Chase was to start summer school, but we sent him to vacation bible school at the church for the first week instead.  He wanted to be with his siblings and, his life being so different as it is, I couldn’t refuse him this opportunity.  

The Monday morning of “VBS” rolled around and suddenly, he didn’t want to go.  When I asked why not, he would evade by screaming about something or simply leaving the room.  Finally, he calmed down, crept back into the kitchen sheepishly, and sighed.  “Are you ready to talk now, Chase?”  He nodded and then whimpered quietly.  That sound meant only one thing: Chase was afraid of something. 

We sat cross-legged on the floor of the kitchen and talked until I realized that all the screaming had been a sabotage of sorts because while he knew the church and the people, he didn’t remember “VBS”…something he preferred to refer to as “PBS” or “PBS.org” (for real), and because he didn’t know it and couldn’t account for it in his brain, it terrified him.  

As we talked, I asked if he wanted to pray and he nodded silently and so we prayed that God would give Chase peace.  I said “Amen” and his head shot up with a quick question.  “Mom?  Will you pray that my teacher would be somebody who knows me? Please? I need somebody who knows me.”  Not just someone that he knew…no, someone who knew him.

An hour passed and as we walked into the brightly lit auditorium, I watched Chase lose his fear to intrigue as he took in the jungle set and the replica of Mount Kilimanjaro (a part of the week’s theme).  We walked forward to find his seat and at the end of his row, checking the children in, was his 2-year-old Sunday school teacher, a beloved woman who taught him that God is good and glorious and always with us and she said it so often to him from the day he turned 2 that when he lay on pre-op beds and in hospital rooms, when all else pushed aside in his fear, it was those words from the Sunday school room – “God is near me” – that would come to him and he’d sing them softly as he’d wait for the doctors.  This was the woman who’d walk him through the week.  

I’m putting this story down for you to read because I often fall into thought that finds the hard things unjust and the good things deserved and the small things somehow just getting ignored.  So, I’m writing this here and now because life comes with crazy ups and downs and sometimes, I forget to hand the small things over to the One who knows and when I do remember, I’m often too busy to record exactly how He surrounds and blesses.  Chase prayed for someone to know him.  

Stopping to be thankfulmoment by moment.

Chase and Mrs. Worley

Chase and Mrs. Worley

The State of Chase: A Little March Madness

As many of you know, after months of every six-week-scans, Chase was granted a three month reprieve which will be up in a few short weeks.  March has been an amazing, breath-taking month and we’ve been honored to be a part of several St. Baldrick’s and Lurie events already this year.

"Take a survivor picture of me, Mom!"

“Take a survivor picture of me, Mom!”

One of our favorite events has been visiting schools in our district for shave events.  Watching children donate their hair for other children takes my breath away.  There is no guile, just love and caring with the greatest commitment.  The first school we visited, Chase had determined to say something but in the face of the entire student body, staff, and parents, he decided to stay quiet.  I can’t blame him – I was a little terrified too.  However, last week, at our final event for March, he opted to speak and in a gym full of children, staff, and parents, he found words about St. Baldrick’s being a special thing…and then, simply, this tiny 5-year-old with a microphone in his hands voiced the best words: “Thank you.

Talking about St. Baldrick's at Madison Elementary

Talking about St. Baldrick’s at Madison Elementary

In some ways, March has really been a month about hair.  We’ve had the shaving events including Aidan’s shaving, and for the first time, Chase spoke about not having his.  It was “crazy hair night” in the kid’s church programs and while Aid’s full, thick hair easily stood on end with a little gel and styling, when Chase asked for the same style, he expected the same look, and instead, he looked a little like Baby Jack-Jack from the Incredibles – with a single tuft of hair off the crown of his head.  We all thought he looked awesome.  We all thought he knew.  It wasn’t until that night, as he looked in the mirror, that he fully voiced and realized his difference in this area.  “I want my hair to look like Aidan’s!  It doesn’t work! [he smacked his head with the palm of his hand] It’s just my same, stupid baseball. Don’t talk to me about it right now. I’m very angry.”  This was the first time Bob and I have ever heard Chase voice discontent with his differences.  It was both heartbreaking and impactful for us as moments like this one reiterate that we made huge medical decisions which will never stop greatly effecting his daily life.  

It was during these same weeks that I received an email from Chase’s school about hair.  Kids in his class were beginning to ask more questions about Chase and why he didn’t have hair like them, so, last week, we went into the school with a program designed to educate and answer questions and the woman read a story about a boy named Billy, and she brought a bald doll on whom all the children practiced cleaning central lines, and then Chase got up and showed his class some pictures – pictures you all know by heart – of Dr. Lulla and surgery days and hospital days, and he explained each one in his own way and the kids sat and listened.  And then, because they’re five and they’re wonderful, they fixated on Chase getting to do special things in the hospital and when we reminded them that hospitals try and make it special because Chase couldn’t do “normal” things like swim and be outside when he was having chemo, it reminded them how much they all like to swim and be outside and though it turned out a little like nailing jello to a wall, it was precious and real because Chase stood up in front of them and talked about a part of who he was and is.  

Chase and Chelsea -from Welness House- work with a chemo doll and Chemo Duck to talk to Chase's class about cancer life.

Chase and Chelsea -from Welness House- work with a chemo doll and Chemo Duck to talk to Chase’s class about cancer life.

Courtesy of Lurie Children’s and LaSalle Bank, March also brought another first for Chase: a Chicago Bulls game.  I wish you all could have been there the minute he stepped into the crowd on the edge of the box and took in the fullness as a visiting choir sang the national anthem, sound and song echoing off the rafters as the lights glowed around.  He’s learned how to wear a hat to cover his ears which greatly decreases his over-stimulation and helps him enjoy large, loud moments and his eyes were huge and awe-filled as he turned and screamed “This is awesome!”.

IMG_0343

It was also during this time that Chase lost a cancer friend.  They only met a handful of times, but Rusty and his family have always gone before us and encouraged us so.  And that losing season brought up lots of questions for him again.  One afternoon, the day before Rusty passed, Chase “composed” a message to him on the computer and then we sat on the couch and talked and he asked if he was going to die soon too because he has cancer and chemo and talks to Dr. Lulla like Rusty.  Some day, I will write about this conversation, but today, I can’t.  There were lots of tears that day – for us, for Rusty, for this broken world – but there was also joy in talking through this not being the end.  To be able to speak about these things was bittersweet and we count ourselves beyond blessed to have known Rusty and been encouraged by his story.

Early morning checking in on Rusty via Facebook

Early morning checking in on Rusty via Facebook

Finally, this March time has been an up and down time with some anxiety as Chase has had some health issues that we’ve been monitoring.  He’s complained of headaches and frequent stomach aches, failed his eye exam, and then, started tripping and falling quite a bit.  It became apparent within a few days that he had an issue with his ear, and while that has now cleared up and he seems more steady most of the time, we continue to watch his sleep patterns, appetite, and speech, as he hasn’t been himself at times – to the point of effecting his school schedule.  All of these symptoms can be normal, or they can be very not normal.  Which is both comforting and deeply terrifying because we never know when he can’t remember his birthday if it’s because he’s five or because he has cancer.  We know that the MRI is soon and that if it’s a cancer concern, his symptoms will become more apparent.  And so, as always, we wait…one part scoffing at how silly and over-concerned we feel, and one part with the silent “what if?” question. 

But for today, in this moment, he’s fine.  In fact, I recently found him hiding under the desk in the living room with  his father’s electric razor trying to give himself an even more bald head.  So, we close this crazy month and look forward to more Spring and the weekend celebration that life is ours and death has no hold, and we take each breathing day…

…moment by moment.

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.

 

Joy In The Mirror

We sat at the long table in the restaurant.  A table full of friends who had invited us to join them and we’d agreed.  I looked at Bob and he looked at me over the wiggly, wriggling heads struggling to sit still like grown-ups do.  How crazy were we to say yes to a restaurant with three little boys in tow? 

Chase especially struggles to sit still (a running family joke given his name), and so he’d sit for a while at the table and then as a reward, I’d get him up and let him walk around and back before sitting a spell again.  And I watched people watch him… His shoes are like the shoes of other boys, his clothes and eyes and energy and everything else…and then his white, white head and the slightly faded, but oh so noticeable scar that runs the length of skull and you can see the looks of pity, the politely averted eyes.  I don’t blame them.  I’d do the same thing.  I find myself wanting to run up to them and say “It’s okay!  Look all you want!  This is a miracle in front of you!“, but instead, I smile, move on and caution Chase not to trip the servers in his enthusiastic dash.

You see, sometimes being out in public with a visibly chemo-worn child is like stepping in front of a mirror.  When we’re home or with good friends, we’re just us and everybody knows Chase.  But when we step out, like that day in the restaurant, it’s a mirror.  Stop.  Look.  We’re different.  This scar says our life looks nothing like yours.  The loudest of reminders in the slightest of glances.

And then, a family approached our table.  They spoke of mutual friends and places from years past, they knew Chase from his Facebook page and they prayed for him and they’d recognized him.  And then they encouraged us with their words and pressed a gift card into our hands.  “Your lunch is on us“, they said.  And then they were gone.

The gift card sits as a reminder with my papers – you just never know.  There in the mirror that day, there was fellowship and joy because of the recognizable scar.

So pay it forward, play it back, make it right, stop to help – don’t be afraid to make eye contact because you never know when you might be staring at a miracle.  And you might be stepping next to a battered parent in front of a battered mirror and showing them joy.

Moment by moment.

photo-3

Fear, Thanks, and Deliverance

I have been considering thankfulness a lot this week.  Specifically, how I could possibly be thankful in a season filled with things that I wish weren’t happening.  I have found myself praying “God, I know that I’m supposed to be thankful for everything, yet how can I possibly be thankful for cancer?”  This awful disease provokes zero gratitude…rather, pain, hopelessness, and often fear.  In the face of heartache, how can I be thankful?

My answer is found in the knowledge that I have been already delivered from this fear:

“I sought the Lord, and he answered me and delivered me from all my fears.” Psalm 34:4

This is how I can thank God for the cancer: as I am blessedly pushed to greater dependence on Him in the midst of this season, I seek him more, and as I seek him more the fear is gone, and God’s indescribable grace becomes both how I am and what I am most thankful for in this season.

Preparing for discharge…in time for Thanksgiving!

Blessed beyond blessed with so much to be thankful for in this moment by moment life…

Happy Thanksgiving

Thank You For Cancer

As Chase and I were talking this morning he suddenly began to pray: “Dear Jesus,” he said, “Thank you for my cancer! In Your name I pray, Amen!” The “amen” was almost a shout as he turned to me exuberantly and exclaimed “Mom! I prayed for my cancer!”

I almost had to pick myself up off the floor.

His precious joy is something I needed to record here as a picture of “faith like a child“…no strings attached, no analyzing or questioning, no ulterior motives, simply joy and thankfulness in the moment.

But Jesus called them to him, saying, “Let the children come to me, and do not hinder them, for to such belongs the kingdom of God.” Luke 18:16

Moment by moment.

20121018-110621.jpg

The 87 Hour Day

Today was an 87 hour-long day in which bedtime was always 86 hours away no matter what time it was.  It was a day when the last person standing was the winner, and if only one person was crying at a time, the winner was me.  Even as I attempt to compose my thoughts here [writing in real-time!], I have been interrupted to 1) answer the question “Mom, am I being quiet enough in bed?“, 2) deal with the child who doesn’t care if he’s being quiet at all – in fact, the louder, the better, and 3) answer the evening questions from the training potty: “Yes, that is where you go to the bathroom.  Yes, that is where you take a shower.  Yes, that is where you wash your hands.  No, you may not read a magazine.” (still unclear if he actually had to use the facilities or wanted a quick round of bathroom-style ’20 questions’).

Still, despite the giant cup of crazy that is my life right now, it’s a great place to be.  Here are just a few of the reasons why:  (Just so you know –  I’m writing these down as much for myself today as for anybody else…)

  • I live in a land where the phrase “Who wants a popsicle?!” makes me a national hero.
  • I live in a land where all injuries, real or imagined, are healed with a kiss and hug.
  • …where playing play-dough makes me cool.
  • …where flights of fancy are celebrated and even required.
  • …where “therapy” is a fuzzy baby head pressed on my shoulder.
  • …where just because my name is “Mom”, I am invincible. (and can even resuscitate the caterpillar that Chase ate) (not really) (but they thought I could)

Thinking about what a fun land I live in reminds me to be thankful on these long days.

Now I’m back to real-time.  I need to go tell them to put their heads on their pillows and be quiet (again) (you’d think they’d be tired after 87 hours) … and maybe kiss them and snuggle them in … just one more time.  :)

Good Night.