Surgery went very well and Chase went into it with Lucas’ name still written on his arm. He was a complete boss and even his Panda Bear (who, according to Chase, is really a dog named “Panda Bear” who can bark and is prone to getting in doctors and nurses’ faces and screaming) behaved himself admirably.
But since waking, he has been in a lot more pain than he was last time, his anesthesia “detox” has seemed a lot more difficult, and his right eye is quite weak, so with the left eye patched, he’s been navigating like he’s blind…when he walks at all. He’s miserable, but it’s over and done now, and for that, we are very thankful.
This is the hard season — the time when we try and comfort in the middle of the damage that we ourselves have allowed. It’s guilt-producing and humbling and would break us if not for the grace of God.
We are so thankful for your prayers and encouragement!
Bob was actually able to be off for the entire day (a minor miracle), we had a dear friend show up in pre-op to encourage us, Chase’s teacher and her family sent wonderful Spider-Man gifts, his class recorded a special video for him, Tyndale staff brought us dinner, and all the doctors and nurses have become good friends in the last month. So in truth, even though it was a hard day and will probably be a rough night, we are incredibly blessed.
And I’ve been getting texts of people with their books today – my heart is full.
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
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.
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.
