fellowship – CHASE AWAY CANCER

“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.

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.

Tag: fellowship

Walking Through The Door That’s Been Opened

Joy In The Mirror

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