Tag: Chase

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)
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

In The Shadow Of Joy

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.

Taste and see that the Lord is good. Psalm 34:8

 

FullSizeRender (56)

Way-FM This Week

This week, I had the honor to guest write for Way-FM. They asked me if I’d be willing to write about the seasons in life that come with no answers, and fully acknowledging the irony of answering the unanswerable, I undertook to wrestle through this. And I’m so glad I did! God is faithful and good.

I hope my wrestling blesses you as it did me. I’ve included the first few sentences here to get you started and then click on over to Way-FM and discover where I ended up with my answers.

-MbM-

download“There are no words in any language that adequately express the emotion felt when hearing the phrase: “There’s a large mass”, no way to express the feelings that wash over the heart and mind when these words are spoken over the body of a two-year-old boy.

But, I know I’m not the only one who has heard words like this and Chase isn’t the only one to carry cancer like this.
How many times have I heard other stories?

Have you heard them too?

The friend whose breast cancer was gone for thirty years and then relapsed…

The small child who had every advantage that modern medicine could offer and still stopped breathing…

The parents and family and friends with empty arms and an un-fillable void in their lives…

Cancer is a bully – a vicious beast robbing us of our health, resources, relationships, and perhaps most frequently: answers. Nurses look puzzled, doctors shrug, and all people – from every possible religious and cultural background – weep, pray, and go through various rituals to beg for answers that will bring peace and change, and most especially, healing. As if somehow, understanding the unfolding horror will make it suddenly more bearable…”

Read the rest of this post on Way-FM now…

Do You Want To Talk About It?

We sat curled up on the bed – just her and me – the only two girls in this whole house full of boys.

“Do you want to talk about it?”

Darcy’s nearly ten-year-old voice was calm as she described almost dispassionately what it was like to discover her two-year-old brother having a seizure when she was only six. And then, her tone changed and suddenly, like a full-fledged adult, a hand came up to her face as her eyes welled up. “I’m so sorry…I don’t know what happened. Sometimes I can’t talk about this without crying…”

Oh, how I know that feeling! Even when Chase is in the next room – living, breathing, and probably getting into trouble, the flashbacks can still take my breath away in an ordinary conversation. 

Darcy and I ended up talking for a long time and crying some too, and it lead to these words… Because sometimes I forget how hard this is for her, Aidan, and Karsten.

Aidan, Chase, and Darcy [photo credit: Jan Terry]
Aidan, Chase, and Darcy
[photo credit: Jan Terry]

For the “cancer” siblings: especially the littles…

Set the tone for understanding — To a child, sickness (of any kind) is contagious. I didn’t know this until we talked, but that early Tuesday morning when Chase was taken to the ER and Darcy and Aidan cowered in the shadows of their room, Darcy kept watch over two places. She told me she’d go to the window and check to see if the paramedics had taken us out yet, and then she’d go back and check on Aidan to see if he was seizing too. She stood in the dark of the room and thought it could be all of them…all of us. It would be some time before she and Aidan fully understood that cancer could not be caught from or given to another person. 

Presence can mean peace — They say nothing is worse than whatever you imagine and I think it may be true. We couldn’t always bring siblings to the hospital because Chase was in isolation so frequently, and our gut was to keep the very worst of diagnosis and treatment from them on some level, yet, Darcy told me that the times she felt most at peace were when she could either come to the hospital and see Chase personally, or when we’d FaceTime from our room in the oncology floor to Grammie’s house. She could see the IV cords and watch him vomit, but she could also see that he was alive and that was what brought her the most joy – just seeing he lived. 

Set the paradigm — This one is kind of interesting to process because Bob and I actually didn’t have the luxury of telling our kids Chase had cancer. We were completely separated from them for a full week and their grandparents had to tell them before they found out from a third-party as loving friends surrounded them in those first days.  But that being acknowledged, we’ve found (through trial and a lot of error) that explanations whenever possible can be very helpful. Whether it’s why Chase was getting gifts and special attention or why mom and dad seem so distracted, tired, or weepy, sometimes an age-appropriate conversation provided better understanding than pretending it wasn’t happening, brushing questions aside, or simply evening out special gifts among siblings. Our family motto has become: “There’s nothing we can’t talk about”. Hard, but good. 

Help direct emotion — Chase’s siblings cannot live through all that they’ve seen and not be significantly changed. Whether it’s memories of me laying on a gurney clutching their motionless brother to my chest or listening to kids making fun of a post-treatment Chase behind his back, there is a lot of fear, hurt and anger.  A lot. We spend a significant amount of time talking through how those feelings of fear or angry protection are a completely normal human reaction to what they’ve experienced, but it’s what they do with those feelings that will define them. We pray often that these things would make them and not break them, and that they would be strengthened in compassion and prepared to defend the weak because of what they’ve lived. And then we try and find ways to apply it to the every day.

Be prepared for deep feelings — This one surprised me and still does. Somehow, I expect that a lot of what we’ve gone through went over their heads. Not so – at all. They may not understand the word “terminal”, but they can sense it. There have been times that Darcy wanted to sit and talk and then others, like when she’s at school, where she hasn’t wanted to talk about Chase’s story at all, but she’s very aware of it and who she is in it. She explained that the kids don’t understand and the teachers all want to hug her and while she appreciates the love, both of those things make her feel very vulnerable. She doesn’t want to cry at school, but sometimes she needs to come home and just have a good cry over it.

Look for seasons of rest — Having a sibling with special cancer or neurological needs is as full-time for them as it is for us as parents. Whether it’s making a concession over parental attention, curtailed family activities, partaking in extra “cancer activities”, or interacting with a neurologically, emotionally, sometimes physically demanding playmate 24/7, I sometimes don’t even realize (in my own exhaustion) how tiring living with a cancer sibling is for my other kids. But Darcy could explain it to me; sharing how sometimes she can’t handle Chase anymore, but other times, she misses him and is slowly learning to listen to him when he demands her attention because he says things like “I’m a survivor, Dars!” (his pet name for her). And like adults, the siblings can have a layer of guilt over annoyance during a stressed family dynamic – especially when it’s towards a family member with a terminal illness. The guilt alone is exhausting.

There’s just no wrapping these things up. They’re messy and the dynamics continue to unfold as the kids change and grow and Chase lives on in his complications and joy. Some days are beautiful and could be used as parenting seminar illustrations and others feel like a complete wreck in which we need a bomb shelter rather than a house, but spending time with Darcy on this subject reminded me once again how good it is to just sit, talk, and pray together. We are not alone.

Moment by moment.

“Teach us to realize the brevity of life, so that we may grow in wisdom.” Psalm 90:12

The princess and the super hero
The princess and the super hero

Of Life, Lists, And Too Many Appointments

This past week, we finally finished up all of Chase’s follow up appointments from his January MRI.  I never get tired of seeing him interact with his doctors. This time, he brought his St. Baldrick’s cape (a gift from the staff for his ambassador year) and his new Spider-Man mask. He ran through the halls saying “Zoom! Pow!” until he tired of people talking to him, and then, stripping off his costume, he lurked in the clinic doorway and made silly faces at any doctors or nurses he saw in the hallway.  He also tried very hard to tell one of the doctors the new “knock-knock” joke he’d just learned from his kindergarten teacher (“Orange you glad I didn’t say ‘banana’?) and it was something of a fruit basket upset that was pure awesome and complete Chase. Life is never dull, that’s for sure.

Despite the good results of his January MRI, there are several continuing issues. After two years of stability, Chase’s hearing loss has gotten worse. Also, his growth has almost completely fallen off the charts – introducing conversations about the potential need for growth hormones. This is something for which Chase is potentially an excellent candidate, but something that also holds a very real threat of secondary cancers. (deep breath and lots of prayer…)

Before the end of July, Chase needs to do the following:

  • Have two separate surgeries on both of his eyes to remove treatment-induced cataracts that will leave him with the eyes of a 45-year-old (even after the surgery)
  • Have an echo to check his heart for chemo damage
  • Have a bone scan to check the age of his bones (a prerequisite for the growth hormone discussion)
  • Have a consult with his ENT to determine if he needs surgery to remove his ear tubes (they’ve been in for two years now and are showing signs of wear in his ears)
  • Possibly have an ear surgery
  • Have another audiology test to determine if he needs some type of hearing assistance 
  • Have blood work done for at least two of his doctors
  • Have a full brain/spine MRI
  • Meet with his neuro-oncology team
  • Meet with his neurosurgeon
  • Meet with his endocrinologist

And all of this is in addition to the behavior therapy consultations he needs, the IEP meetings, and the weekly speech, occupational, and physical therapy needs.

What a laundry list. I spent nearly three hours on the phone one morning just setting up appointments and coordinating with hospital staff and dates.  Currently, my calendar makes me want to go hide somewhere.

The danger in making a list public is that someone always has a longer and more complicated inventory of things to accomplish. Maybe it’s you. Maybe you’re looking at my “Chase list” and thinking: “Wow, she has no idea…” – and you’d probably be right, but I made this list up and wrote about it for two reasons…well, three, really.  

  1. Pray for us. The decisions ahead regarding growth hormone are not to be taken lightly and feel like some of the most weighty things we’ve talked about since the decision to radiate Chase’s brain.
  2. God is faithful. I need to remember this when I look at all the next few months will hold. He’s seen us through this far and He’s not about to stop now.
  3. Hug a cancer survivor.  Today, please.  This is what “survival” looks like. It’s a weird medical purgatory where you’re not really in treatment, but you’re definitely not out of needing help either.  So hug them close and tell them they’re amazing because the battle wounds are real and never quite go away.

Tying it in: Chase’s appointment list reminds me of my life. Too much, too complicated, too crazy… How do I reconcile all the broken? How do I best understand what God wants for me? …for our family? This is the moment by moment nature of it all. I need to lean in; seek Him. Thankfully, He isn’t done with me yet. …with any of us yet. The list is in His hands; life is in His hands.

“And I am certain that God, who began the good work within you, will continue his work until it is finally finished on the day when Christ Jesus returns.” Philippians 1:6 

Moment by moment…

{Below: some pictures from our clinic day at the hospital}

Calmly, the super hero makes his way through the metropolis...
Calmly, the super hero makes his way through the metropolis…
Chase taking a "selfie" with his Nurse Wendy, our family's brain tumor coordinator and a part of our heart.
Chase taking a “selfie” with his Nurse Wendy, our family’s brain tumor coordinator and a part of our heart.
Chase and his friend, Matthew, meet up and play "got your nose" in the Crowne Sky Garden after their appointments.
Chase and his friend, Matthew, meet up and play “got your nose” in the Crowne Sky Garden after their appointments.

Get all the latest news and info sent to your inbox.