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…
I originally wrote this piece a couple of years ago for my amazing friend Sheila as part of her Chicago Now Blog, Mary Tyler Mom.
Sheila is a cancer mom herself and every year, she fills the entire month of September (childhood cancer awareness month) with our stories. It’s a season that is not for the faint of heart, but then again, this is a life that is not for the faint of heart.
I know there are so many of you wonderful parents who identify with one or another of these things that have long made for extraordinary living. God bless.
I so look forward to knowing the purpose in the suffering.
In the meantime… Moment by moment.
I’m a cancer mom.
There are fourteen months of “there’s less than 20% chance”-beating treatment, over one hundred inpatient days, as many outpatient days, ER runs, ever so many blood and platelet transfusions, nine chemo therapy drugs, multiple surgeries, and endless procedures and tests saying that I’m a cancer mom.
But what does that mean to me? Just this…
It means being wakened in the night by nightmares and then realizing it really did happen…I really did hear “There’s a large mass” pronounced over the ER bed of my 2-year old and there’s been no waking up ever since.
It means absorbing the sad looks and conciliatory touches to the shoulder and wanting to shout that we aren’t at a funeral yet.
It means “normal” defines any trip made to the hospital with myself behind the wheel instead of five-point harness-strapped into the back of a speeding sirens-and-lights ambulance while assuring him it’s going to be okay.
It means handing out candy at the door and seeing the looks on the costumed faces as they take in the too white, scarred, bald child at my side and ask their parents what he’s supposed to be while the embarrassed adults avert their eyes and move quickly away.
It means “fixing dinner” is preparing an 18-hour IV bag of nutrition and hydration and then attaching it to a tube in his chest.
It means watching a chemo being carried into the room…a chemo so light sensitive that it must be protected in a dark bag…and then they hang it and pump it into my baby.
It means being the grown up and saying; “You need to take your medicine even though it’s yucky.” to a red, tear-stained face when I want to sit down and cry right along with him.
It means listening to him whisper “I’m so brave” over and over as the medicine lulls him into a stupor and I hand him off to sets of surgical masks and scrubbed arms, knowing he’s going into the operating room and I can’t go with him.
It means that while other kids his age are learning to ride a two-wheel bike, I take joy in his remembering a words or learning to jump with both feet at the same time because in his world, that’s a really, really big deal.
It means there’s a kit in my purse that has gloves, alcohol swabs, clamps, and everything I need for a child with a central line and I carry it everywhere he goes….just in case.
It’s being up and out at 2:30AM, not for a party, but for an ER run in which I find myself praying that the fever goes down and the blood pressure goes up and that we can just be admitted to the regular oncology floor and not the ICU.
It’s learning to walk, and even at times run next to a child attached to tubes because playing makes them feel better.
It’s accepting the part of the living child forever lost to the moment his brain was open on an OR table and loving the living child he is today.
It’s feeling like I can’t breathe until I get answers and then they have none and I somehow go on breathing.
It’s allowing the child I swore to protect to go through intense seasons of pain, heartache and potentially life-long damage in order to try and save him.
It’s sitting by a hospital bed; a hundred percent powerless to fix anything and praying for the day the chemo stops hurting his skin enough that he’ll be comforted by a mother’s touch once again.
It’s holding him close next to the Christmas tree and answering “Mommy, will you hold me close so the death won’t get me?” without completely losing it.
It’s hearing that after almost two years of clear scans, there’s something growing and nobody knows what it is and the best thing to do is to wait and check again in six weeks and I find myself agreeing over the sound of my heart ripping open.
It’s knowing we’re out of options to cure his diagnosis and still getting up in the morning.
It’s coming to peace with the understanding that what I do may never change an outcome or what’s ahead for my darling son…and then finding the strength and purpose to make the most of every second of every day anyway.
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…”
Sometimes it isn’t the actual doing of things that is hard, but it’s the thinking about doing things that lays us out on the floor and oddly teaches us dependence.
Chase has his first of two eye surgeries tomorrow (Friday), and we’re all a bit of a wreck over it. Which is ironic when you consider all he’s had done over the years. To have gone from major, major brain surgery with half his head lying open to fearing a simple outpatient surgery on one eyeball – that same procedure that very likely half the population over age 60 has done – it doesn’t make sense, does it? But fear never does make sense.
We are desperately out of practice with surgeries. Chase hasn’t had a single procedure for nearly two years, and so the thinking of tomorrow – even when we rehearse being strong and of good courage because God is with us – it’s been laying us out, or driving us up a wall.
Carrying this on his heart finally culminated yesterday morning in a knock-down, drag-out, complete and total refusal to get on the bus. He lay down on the sidewalk, and then he ran for the door and wouldn’t let go of the handle, and then he made it in the house and took a standoff posture in the living room, followed by clinging to the bannister while I tried to carry him down the stairs, and finally, a star-like posture with his arms and legs against either side of the doorway while I tried to get him outside again. This kid, he knows how to fight. You get the idea…
Right now, it sounds a little hilarious and completely like something out of a Calvin and Hobbes cartoon, but in that minute when he was screaming and pulling my hair, and the bus driver was honking and frowning at me, and I was pretty sure one of the drivers in the halted cars on either side of the street was about to call child services on the whole spectacle, it was awful, and I could feel myself sweating and freaking out right along with Chase.
He missed the bus and the morning got completely thrown off, but it ended up being the best thing that could have happened because I got him to one of his “safe zones” – the places he can escape to when he’s really worked up – and I wrapped him in his favorite, old blanket, and when he was finally still, we talked.
“Surgery.” He only spoke one word and his poor, broken eyes welled up with tears.
He recoiled as I began to speak comfort and logic and interrupted frantically, “But are they going to take my eyeballs out??”
Oh dear ones, I’ve said it before and I’m saying it again now because it took Chase in tears with secret, crazy fears and sitting under a surgery shadow again to make me realize afresh how desperately I needed to slow down and just be in the moment by moment grace of life. Sometimes, we all just need to sit down and reassure somebody that no matter how bad it all feels, our eyeballs are still going to be in our heads at the end of the day (or whatever your equivalent of this scenario might be).
Life is too important and too short to worry about what we look like to others or what happens to our perfectly planned days when the unexpected shows up at our door. (or ninja-refuses to step outside our door)
It’s time to keep our eyeballs in our heads, breathe deep, and love those around us in need. And if you think of it, please pray for Chase as he goes back into the OR tomorrow.
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“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.