I must confess that I don’t listen to podcasts very often, but this is a good one, and I’m not just saying that because they’re talking to me. 😉 You’ll definitely want to tune in to Tyndale House Publishers The ARC Podcast!
And seriously, you guys, even if you don’t ever podcast, you need to listen to this because Joy and Adam (the hosts) had to listen to crazy Ewoldt family stories and they deserve a really great audience on this cast for that alone.
I mean, I’m talking potty-training-boys kind of Ewoldt family stories. So even if you feel you’re all caught up on Chase’s story and hearing about the goodness of God (Ha. As if…), please, listen … for Joy and Adam… 🙂
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
UPDATE, May 3, 2016 — For some reason, even though I wrote this post yesterday morning, several people didn’t get the news in their inbox until a day later. If you fall under that category, I’m so sorry! But, don’t despair… I have the link to the recording here. You can follow the link to listen to my talk with Janet or to pass it on to friends. You guys, it was truly such a blessed time!
MbM
Oh my dear friends, I’m so honored (and slightly terrified) to tell you that I’m going to be hanging out on In the Market with Janet Parshall later today to talk about Chase Away Cancer – This is EPIC.
I honestly don’t know whether you should pray for me to speak an intelligible language or pray for Janet since she’s the one who has to talk to me. Hey, tell you what…just PRAY.
If you’re in the Chicago area, you’ll find me on Moody Radio (90.1) at 4:00PM (CST), and if that isn’t your station/location, you can follow the link here to find a station near you.
And just about the second that I’m ready to freak out and fall down over the “bigness” of this little talk (I’m a mom in sweatpants, remember?), I overheard this conversation amongst my children this morning:
“Karsten, you can’t be crazy today because mom has to talk to a lot of people on TV. Except it’s the kind of TV you listen to, so stop messing around because you’re stressing her out. And then later, we will watch her with our ears.”
Oh, what a great reality moment. I’m feeling like all my kids need to stay in school for now…and also like there aren’t any college scholarships in our immediate future.
But seriously, come join me this afternoon (and don’t forget to watch with your ears) as we talk Chase Away Cancer and the faithfulness of God in all things.
Moment by moment.
“May the words of my mouth and the meditation of my heart be pleasing to you, O Lord, my rock and my redeemer.” Psalm 19:14
I’ve come to this writing place so many times in the early hours of morning light. I’ve come here to sit and think through brain surgeries and other surgeries. Through diagnosis and heartache. Through wrestling with God and seeing his love in unexpected and beautiful ways. Through exhaustion and answerless seasons. …and if you’ve been following along for any length of time, you know I could keep going with this list.
But now, in this dawn, I wake up, not with an impending sense of dread, but with great anticipation. And it seems surreal to me to consider that I look out, not over the lake as I have so many times before, but out over my own backyard and the very window where I stood and heard that we were looking at a potential relapse back in the day…where I stood when I heard my mom was sick. In some ways, this view has become my baptism by fire – it’s my cancer window, and yet I love it.
This morning as the calendar quietly speaks May over us, next to my well-worn, well-loved old coffee mug is a piece of already well-worn art. Its 289 pages hold my blood and that of my baby, and its outside is already covered in the smudges of tiny fingers. And if you look closely, there are even some lip marks where a bald boy held it close, kissed it soundly, and whispered over it with awe: “It’s my book! It’s about me!”
Oh dear ones, once again in the dawn, I have no idea what comes next. We’re standing on the edge of something and I believe it’s for our good. Once again, I’m without answers in the wait to see. But as always, of this I am sure: There is Light in the darkness.
And as always, even though we have know idea what’s ahead, we know how it will unfold.
With all my love and gratitude, joyously waiting with GREAT HOPE… Moment by moment.
“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…
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