Monthly Archives: July 2015

Three Years And A Letter

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This is my command—be strong and courageous! Do not be afraid or discouraged. For the Lord your God is with you wherever you go. Joshua 1:9

Friday, July 31, 2015

My Chasey-Bear,

How very far you’ve come!  When they first put a name to the giant ball inside your head, the nightmare of it spreading through your skull and down your back, I read that “long term survival” was 3-5 years, and now, here you are: at the three year mark.

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I know you don’t like me to even speak about the hospital on the majority of days and it’s okay, we can mostly play on your terms, but today is different.  This day in your short history, you were on nobody’s terms and only God himself knew what came next as we learned the unfolding: that you would carry a terminal illness with you the rest of your breath here on earth.

I still remember how small you looked in that first ER bed, how confused your eyes were, and how rosy your cheeks got from all the steroids they pumped in as they tried to save you from yourself before the damage became too great.  

I remember holding the oxygen mask to your face and thinking it couldn’t really be happening, and if we were in a movie, that would have been the moment for slow motion and an audible heart beat.  Because sometimes life feels like it’s slowly tearing apart.

We’ve given you over to Jesus more times than I can count and held you close even more time than that.  Yet here you are, still on your journey, standing smack in the middle of your life road, laughing at anything barreling down on you – and how we love you for your fierce, “you-and-what-army” self.

I know these days turned into years have not been easy for you – and I know “not been easy” is a gross understatement.

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None of us know how much further this road continues, but I know if it’s with you – as I’ve known from the first time you kicked inside of me – it will never be dull.  And so we’ll just keep at it as we have tried to all along… in His grace, moment by moment.

All our love, my darling survivor,

Daddy and Mama

Your grace abounds in deepest waters. Your sovereign hand will be my guide.
Where feet may fail and fear surrounds me, You’ve never failed and You won’t start now. So I will call upon Your name and keep my eyes above the waves when oceans rise. My soul will rest in Your embrace, for I am Yours and You are mine.  ~Oceans, Hillsong United

Of Birth Order, Stature, And What Really Counts…

“Are they twins?”  The lady smiled as she gestured to Chase and Karsten – brothers born 22 months apart. 

The man bent forward to talk to Chase, who will be six in December: “I have a granddaughter who is three like you, too!”

As we sat at the lunch table one day last week, we talked about who had been born first in our family and Chase kept insisting he was the baby.  We tried to point out several times, in several ways, that he is older than Karsten, yet he refused to accept it and finally, the source of his reasoning became clear: “But I’m the baby of the family because I’m the smallest!”  And just like that, it was spoken.  He sees and understands – on some level – the radiation damage in it’s unfolding.  

I’ve considered this moment for some time and it’s here.  Karsten is as tall as Chase.  It’s neck-and-neck, but it’s happened.  Karsten, at nearly four, stands as tall and far more broad than his older brother.  And Aidan, though a scant 12-months older, stands nearly a head taller than both of them.  

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It’s heartbreaking to see this and it’s precious because Chase is alive, and it never stops being amazing to hear his wise, old voice come out of such a tiny body.

So, I’ll keep the smaller size of clothing in the drawer knowing Chase will probably use them a little longer.  And if stature were measured in experience, he’d already be ten feet tall.  

Moment by moment.

“The Lord doesn’t see things the way you see them. People judge by outward appearance, but the Lord looks at the heart.” 1 Samuel 16:7b

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Of Breathing, Growing, And Being An Ambassador

Sometimes Chase remembers that things change as he grows and sometimes he doesn’t.  The last time he had a continuous EEG (the process of monitoring the working of his brain for hours on end), he was newly 4, six months off chemo, and his heart and body were both still deeply hospital weary.  He had to be wrapped and held and he screamed the whole time as the wires and goo covered his head, so when I told him on Monday that the time was coming again, he slumped down on the couch next to me.  “Mom, stop talking.  Please don’t say anything else.  I need to breathe.  No more talking… I need to breathe in and breathe out right now.”  And I sat half laughing and half broken that he’s 5 and yet he’s 107 for all of his experience.  

The awkward "can't-climb-into-the-hospital-bed-with-you" snuggle

The awkward “can’t-climb-into-the-hospital-bed-with-you” snuggle

In preparation, we wandered through Target last night and found a new movie and some popcorn because seizures can happen when you go from sleeping to waking and so he had to be able to sleep during the test, and as the kids sat on the old, blue leather couches and munched around giggles at WALL-E, there was another July EEG night on my heart.  One when Darcy and Aidan were still too young to stay up terribly late and Bob and I took turns napping and walking a two-year-old Chase around the block and at 10:30, when I simply couldn’t stand anymore Thomas the Tank Engine and decided to put him to bed, he lost his balance and fell, and my stomach turned, but many things can cause a fall and so we went to bed anyway…never knowing that it was less than 48 hours til we’d sleep in an ICU under the shadow of imminent surgery and tragic diagnosis.  I always think of that night come each July and it was my turn to breathe in and breathe out and remember that by the grace of God, that night wasn’t a minute past, but nearly three years ago.  

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Being perfectly still

This movie night lasted until 11:00 and the EEG day started at 5:00 and in moments like this, grace and coffee are my best friends.  By a mile down the road, it was time to find the nearest bathroom just because that’s what happens with 5-year-olds, and as we sat on the Eisenhower in the long lines of traffic, as soon as he saw the top of the Willis Tower, Chase pulled out his iPad and turned on 10,000 Reasons, because sighting the tower means he’s almost there.  Three years have nearly passed and this is still how he prepares for a hospital day.

Within minutes, we were there in the familiar rooms again and then came the moment he knew things had changed for he sat completely still while they put 21 brightly colored electrodes all over his skull and the only time he ever got cross was when I tried to make him laugh. IMG_1250  And I got to hold his hand and not hold him still.

Chase never relinquishes a fight and it took him until 5 hours into the test to fall asleep and that was 5…long…hours… of sitting in a bed with virtually no radius of movement unless a bathroom was absolutely necessary.

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Sleep finally wins

 

When the test was done, having mercifully lasted only 6.5 hours, he pulled some St. Baldrick’s brochures out of his pack.  They had his picture inside, his and Dr. Lulla’s, and to anyone who would stop, he gave a brochure and said “I’m an ambassador.”  And even though he doesn’t always give Dr. Lulla the time of day during clinic visits, to any and all who would listen, he would explain and point, saying “This is Dr. Lulla and he’s my favorite doctor in the whole world.”  He even stopped a security guard and somehow managed to encourage him to shave his head next year, and it was a precious moment of conversation and meeting, because if I’ve said it once, I’ve said it here a dozen times…this is how Chase rolls.  And I wish you could have seen the tall security guard fold down and give tiny Chase a big hug.  Those are the good moments to breathe in.

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Chase and his “favorite doctor in the whole world”

And now Chase has learned that things change as he grows and what was hard a year ago wasn’t very hard at all anymore, though the sitting still and his mom trying to make him laugh at inopportune moments will probably remain trials for many years to come.  

For now we await results.  No matter what comes of this, we’ll breathe in, breathe out, and take it…

Moment by moment.

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