The life and stories of a cancer ninja
So, yeah…
It was a long weekend and we spent too much time feeling blind in a lot of different ways.
And surgery can take the cataracts out of him, but never the “boy“.
We took a walk in the bright and sun on Sunday and he kept a blanket, hood, hat and sunglasses all over his swollen, ultra light-sensitive face, but he hopped out of the stroller for one minute to do this…
Because, you know, it’s Chase.
And after a while, you learn to expect the unexpected.
-MbM-
“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.
![[Photo credit: Pexels]](https://i0.wp.com/www.chaseawaycancer.com/wp-content/uploads/2016/04/red-school-blur-factory-1024x682.jpg?resize=760%2C506)
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-
“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…”
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.)
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]](https://i0.wp.com/www.chaseawaycancer.com/wp-content/uploads/2016/03/Siblings.jpg)
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
