joy – Page 6 – CHASE AWAY CANCER

Of A Cartoon Life and “No Trespassing” Signs

Do you ever find yourself wanting to sit back and laugh at your life?

Not a hilarious sitcom laugh, but a “Oh my goodness gracious stars! I cannot even believe we survived the last week!” type of laugh. The incredulous kind. Because raising kids is a crazy business and raising a neuro kid is crazy on steroids (and that can be taken, at times, in the most literal sense).

And what I’m working up to tell you is that Chase’s second eye surgery is tomorrow. You know, because, there’s nothing else really going on this week… HA.

It’s like he could just feel that it is a crazy season. And whether it was his back-to-back surgeries, the general loss of control, all the eye drops and pain… or possibly the name “Lucas” written in blue marker on his arm that he won’t let anyone wash off… whatever it was and quite possibly “all of the above”; Chase went a little off the reservation. Almost every single conversation has been a you-and-what-army authority struggle, he banshee-screams almost as much as he talks these days, and last week, he ran away from home twice and I found him sitting in a neighbor’s tree house, hissing and spitting about eye drops and having to obey and how terrible and mean we were for asking him to help clean up the toys. With his little body sitting rigid and angry right next to the giant, red “no trespassing” sign tacked to the tree house that his cloudy eyes and mind couldn’t read, and my palms sweating for fear that someone would see us and think I was the worst parent in the world, I had little choice but to embark on a round of oratorial genius (read also: sweet talk) and my best hostage negotiation skills, because, you know, it’s Chase. HA.

He’s missed the bus and he’s thrown fits and if I’m being totally honest and slightly comical, an awful lot of the last few weeks has reminded me of this…

Calvin and Hobbes, credit: Bill Watterson. (wikia)

And I share this because today, in the shadow of the second surgery, I need to remember that life hasn’t been pretty, but… we’ve survived. And Chase came safely out of the tree house, and there was even one morning when I could tell he wanted to run away from the approaching morning bus , but something clicked and he attack-hugged me with all his emotional energy and screamed in my ear “Mom!! I’m turning it around!! I’m going to do this!!” And though my neck hurt from his bony little arms, my heart was fit to burst with love and joy. Because sometimes the tiniest moments are huge victories.

Isn’t this just life sometimes? It can be an outraged stand-off, hostage negotiating “I so don’t want to do this” thing. And sometimes it’s just straight up “Please God, not this again…” exhaustion. And other times, something clicks and you get the briefest moment to breathe and rejoice in the total chaos and pain.

So we come to the day before another surgery and I guess I pour out all these disjointed little thoughts because it’s a ways of being raw and honest about life with a neurologically-challenged child. I hope it encourages you that you aren’t alone in whatever crazy “no trespassing”, you-and-what-army struggle you face today.

And Chase, he’s in his hyper pre-surgery zone now. He’s looking forward to a few days off school, some post-op popsicles, maybe being able to see better, and he’s already got “10,000 Reasons” ready to go on the iPad.

This is how we roll…

Moment by moment.

Whatever may pass and whatever lies before me, let me be singing when the evening comes… -Matt Redman, 10,000 Reasons

Book Update

You guys…
Whatever you’re doing… KEEP. DOING. IT.
I found out yesterday that Chase Away Cancer is already ranked in the top 50 “religion and spirituality category” books on Amazon.com , and it’s also within the top 10,000 books on the site.
Doesn’t sound that amazing, right?
IT IS.
There are over 8 million books on Amazon.
So, we’ve been live and official for 4 days now and you are literally pushing this book up and out of “written by a mom in messy sweatpants” to something that people will be looking for and thinking about.
You! Guys!!
And while it’s so nice to have my work acknowledged, I truly believe that this is SO MUCH BIGGER than Chase. I keep thinking of Lucas and Rusty and Julia and all of the parents with empty arms or the parents whose arms are full with endless complications and as you’re sharing about this book, you’re bringing just a tiny bit of their struggle and sorrow to light.

I can’t even…

Just…

THANK YOU.

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Walking Through The Door That’s Been Opened

“On my way to ER. Stopped at cross street for her ambulance…”

The sound of my father’s heart breaking through the text was almost palpable.

Back in the middle of the day, before my mom’s heart started beating like it wanted to come out of her chest, I glanced at the clock on the dust-marked dashboard of the van and saw I was late…again.

Chase had been able to go back to school a few days after the eye surgery. However, there could be no recess, no gym, and I had to come to the school and do his eye drops every day as the duration of the week required medicine to be administered every four hours.

As I headed into the left turn and the familiar road across town to his school, I felt the grumble rising in my heart. I’d had to stop what I was doing and negotiate a stubborn four-year-old into the van at his lunch time just to go cajole the bald, six-year-old patient into letting me do eye drops…again.

And then I started thinking about how most days, the hardest part of having a child like Chase post-treatment isn’t the threat of relapse. It’s the day-to-day giving of my time in extraordinary amounts. That would make a good blog post… I thought; Ten Things I Wish You Understood About Life With A Special Child…yes. It’d be trending-ly epic.

I know the dislike of sacrifice sounds a little crazy because as parents, as lovers of Jesus, and as human beings, we are constantly called to lay ourselves out for those around us in extraordinary and unusual ways, but wow, I fight it when it comes to Chase at times and I know it often boils down to secret, shameful, comparison. I look at other families around me and what they’re doing with their four kids or their six-year-olds and I suddenly chafe at my life and my “normal”.

I continued to fight and struggle through the day, mentally laying an inordinate amount of blame on the mid-day eye drops that had seriously taken less than 30 minutes of my time. But of course, I didn’t feel like being serious or literal. I felt like being sorry for myself and how hard things are when life gets interrupted by the constant call of the unusual.

Somehow, the day passed. After hearing about school, administering snacks, shepherding homework, completing another round of eye drops, and having a video conference for the book trailer, I called Bob to tell him my day had gone off the rails and dinner would be super late (again). And just as we were about to head out the door and pick up dollar tacos with friends, the text came from my dad.

The doctors use the words “atrial fibrillation” and then hyphenate it to “A-Fib” and it sounds like a medical drama show, but it really just means that the heart is at war with the body and nobody is quite sure why it starts, but my mom, she lay white as a sheet with her heart rate up at 200, feeling like something wanted to burst out of her chest and finally, when her arms and legs went numb, the ambulance came. In our vapor-short lives, things can change just as fast as a call to emergency response.

And suddenly the eye drops and dollar tacos and all of it disappeared and our kids ended up at another friend’s house so Bob and I could both go to the ER.

We were given the directions to the room, and as I turned the corner onto the A unit, my own heart nearly exploded out of my chest as I stood in front of the room I had not seen since I irrevocably followed the Lurie transport team out the door with my Chase on Tuesday, July 31st, 2012. The first cancer day.

Feeling physically faint as I had to pass the memory, we entered the sliding glass doors to my mom’s ER bay where my dad, his eyes filled with worry and love, was light-heartedly explaining to the humorless nurse how “You see, when I come into the room, Leslie’s heart goes all aflutter…haha…ha…” My whole life, this has been how he chooses hope and I love him for it.

By the end of the evening, the medicines had done their job, the color was back in her cheeks, and they talked about her “normal sinus rhythms” and used the neon green lines on the monitor as an example of her ability to go sleep in her own bed that night. And she hugged me very close and said “I’m so very glad you came.”

I carried those words and the joy-feelings of fellowship and prayer around her ER bed with me into the next day of crazy and eye drops and general life and it made me think: My mother’s heart is at war with her body and my life is still getting interrupted by little bodies on the regular, and I may yet write that post about living with special children, but I felt fulfilled despite the piles of undone things standing out in every corner of the house. And it was in this week of eye drops and hospital visits and dollar tacos that never came to be, I realized (again) that what I want for my life and what I need for my life are almost never the same things.

I want stability and normal and quiet days where my average moments could litter a home and garden magazine with their poetic beauty. God knows I need eye drops, special children, ER trips, and facing my hardest memories to keep me real and draw me closer to Him. Sometimes, you just have to walk through the door that’s been opened for you…

Moment by moment.

Giving What You Have

The bald one forgot his age again, insisting that he was barely five – even though he’s nearly half way through six.

The oldest brother wants everything perfect and keeps losing his glasses.

The sister is worried for the election and significant things like human injustice, but she only ever wants to talk about it late at night.

The baby who isn’t a baby anymore only wants to wrestle and get in trouble.

And somehow we’re out of spoons again.

The days come and go with the monumental tucked in-between little fights and insignificant things that seem huge in the moment. Homework to be done, medicines to be taken, clean up the basement… again…

How do we find significance in our mess and busy?

It was four years ago and a Good Friday. The house was cleaned, the children were cleaned, and dinner was almost prepared.

Those were the days in the condo and I feared having people over to the house because we had no storage and what you saw was what you got – everything was out on the surface. And with children ranging in ages from 5 years to 8 months, there always seemed to be stuff on every surface, half of it being decidedly gross. (those were in the days when Aid and Chase licked everything)

I was doubly afraid because my third-born was a wild card and didn’t fear the parental glare over bad behavior the way the others did. He was known for smiling, waving, and/or thumbing his nose in the general direction of manners and sanity.

And then Bob called and said he was running late and wouldn’t be home for dinner.

Great, just great.

I was making a desperate stab at hospitality and someone I didn’t know all that well was coming to dinner. Then we were going to have to try and make it out the door for the Tenebrae service – all the littles with only me to direct them. I was to be the herder of those with more energy than sense, those who were easily distracted by anything shiny. I could feel myself sweating.

And on top of that, what would this guest and I talk about? Having a conversation at dinner was an attempt at best and the chance of it being intelligible was severely lowered with only one parent at the table. I could just imagine the ensuing chaos. Ugh… People will post warnings about our family and our house. I’m just sure of it.

Then came the knock on the door and Tracey stepped into our lives.

She was already dressed up for the church service and I feared what would become of her beautiful light-colored outfit in my home. I could tell she was tentative and I was sure she probably thought we were crazy as I rushed around putting dinner on the table and the kids tried to be entertaining by putting together a series of banned activities for her amusement. “Miss Tracey! Watch me jump off this table!”, “Miss Tracey! Watch me stand on the chair!”

And then, as Tracey and I stood in the kitchen and made those first attempts at conversation between two people who don’t know each other yet, laying on a blanket near my feet; baby Karsten decided he would roll over.

And that’s the moment everything changed. Suddenly, even though we didn’t know each other and the dinner was late and the kids were crazy, we were doing life together.

And then, as we sat down to our adventurous dinner, Chase leaned on Tracey’s shoulder and told her “I love you. I miss you.” And he repeated it throughout dinner, often leaning over to put his head on her shoulder. In those minutes, she became “his Miss Tracey” and to this day, both Tracey and I remember that time as one of blessing and also as one of his last more normal weekends before strange symptoms would indicate a brain tumor.

There is much to be said for the joy of shared experience in the knitting together of lives. I didn’t know Tracey before that day, but she was with me the first time my baby rolled over and one of the last times before Chase’s tumor started presenting itself. It’s taken a long time, but I’m slowly learning that these life-knitting connections are one of the most precious parts of opening my home or my life. What I have is yours (even the broken and battered stories) because all that I have is a gracious gift from God. I often hesitate and want to shrink from being around others because I want things perfect and neat before I invite someone in, and my life is rarely that way. So often, I seek to impress rather than to connect. But as I go through it all, I’m gently taught and re-taught that life and the living of it is a great gift and that I am most blessed in authenticity.

Never underestimate His beautiful plans for your broken life as you share it…

Moment by moment.

“What do you have that God has not given you?” 1 Corinthians 4:7a

(In addition to being a dear part of our family, Tracey is a gifted artist and photographer and has blessed our family with some of its most beautiful memories.)

Beautifully Interwoven

“You’re welcome to play in here until the nurse comes to get you.” The woman from the front desk wore a big smile and her eyes were understanding as we stood overwhelmed on that first day.

Radiation. The decisions had been irrevocably made. Chase needed further intervention to survive, and so we stood in this place and prayed against all odds and all side effects that it would work and work well. Oh, but my heart still hurt. Because some decisions still hurt even when you know they’re right just because they’re so crazy big.

It’s a good thing God knows all the things that I do not.

The play room was a small rectangular space with a fancy plastic kitchen set on one wall, a crafting center and school area against another, several shelves filled with toys, books, and games, and on the last wall was an entertainment center with a TV and several gaming systems – all of which Chase wanted to play and none of which he knew how.

But my interest was immediately drawn higher to the top of the center, where several poster boards and papers were propped. They were mostly thank you cards covered in children’s handwriting and colorful pictures, each one expressing heart-wrenching messages of thanks for life-saving treatments. But there was one piece in particular that held my attention.

It was a large, bright poster display with row after row of pictures. In each one was a beautiful little boy with dark eyes and a magnetic smile. In most of the pictures, he was accompanied by an equally beautiful woman whose perfect smile and weary eyes spoke volumes of cancer motherhood. I knew that look. In other pictures, there were people who appeared to be family members and sometimes even medical staff. The one constant other than the small boy in the center of each, was what they were doing. For, in every single picture, they held up hands and fingers (however many it took on the given day) in a gesture of marking time: day 1, day 10, day 22, etc… On that one bright board, they had wonderfully documented and counted each day of his treatment in the center.

And then as my white and weary Chase busied himself with trucks on the plush carpet at my feet, I studied the progression of the days and treatments – from the beginning with hopeful smiles and lots of hair to the end with joy, weariness, and what looked like lots of burns and bald.

And with the pictures was one strong thought that crossed my mind: “If this is as bad as it gets – we can do it too.”

So I held the image of the beautiful boy and his mama in my heart and every day as we went back for another treatment, and Chase grew increasingly weak, I’d quietly look to the corresponding day on the poster board and then look at Chase and remind myself that we could keep going because they’d survived too.

I now know that the boy’s name is Isaac and his life changed with a headache when Chase was only a one-year-old playing in the backyard. Isaac would finish his road through radiation a little over a year before Chase ever started. And as Chase’s 2015 ambassador year came to a close, we learned that Isaac would number among the new five who stood for 2016.

The label on Chase’s chart reads Atypical Teratoid Rhabdoid Tumor, and Isaac’s reads Medulloblastoma, and they have yet to meet face-to-face, but most days, I just marvel at how their lives have intertwined and mirrored and how Isaac’s story has encouraged us so much.

And isn’t this why we share our stories – even the hard ones? So that someone, somewhere, can remind their own heart “If they did this, then so can I.” As we share our experiences with each other and seek to encourage each other, we pass a baton. I have run and now it’s your turn. I cannot run with you, but I will stand and cheer you on because I know the course you’re taking.

Yes! This. I know I say it all the time, but I don’t think we can ever hear it enough: There is beauty and wonder in our broken, interwoven lives and even cancer can be used for far greater, far better purposes as we run.

Moment by moment.

April and Isaac in the play room - Day #23 [photo credit: April Adamo Schippers] — April and Isaac in the play room – Day #23
[photo credit: April Adamo Schippers]

Tomorrow, Brave Isaac will shave his head for kids with cancer. For more on this great event, click here.

Isaac and his mom, April have taken their own experience and turned it into a great gift for others! Today, you can visit Camp Out From Cancer – their organization that provides care packages to kids with cancer (Including a tent! Our family was thrilled!)

And as always, for more on Isaac, the other 2016 ambassadors and the amazing work done by St. Baldrick’s, click here.

Tag: joy