Contentment – Page 3 – CHASE AWAY CANCER

Dear Hospital Parent

My dearest Fellow Parent and Partner in the Awful Fight,

First of all, you are so brave. Even when you feel like a huddled, sobbing child yourself – never forget, you are fulfilling your role as the lover and caretaker of your child and you are just so, so brave.

There are so many places I could start, and in truth, this could probably be a volume rather than a letter, but I’ll try and keep it short as I know you’re probably already on overload.

First off, they almost never tell you that sitting hunched and weary next to a hospital bed is going to feel not only normal, but appropriate and right, and leaving the room (let alone the floor or the building) might fill you with all sorts of things, not the least of which is dread. Nobody tells you that it might feel strange to breathe and function in the normal world when your baby is attached to IVs and monitors for their life. But do it anyway. Give yourself a place to breathe as if your own life depends on it – even if it’s forcing yourself out onto the city street with shaking knees and eyes filled with tears for just a minute or two.

Chase in post-op; sleeping off the anesthesia

I know it feels like life is ending, but it isn’t, so try not to let it close in on you. Your perspective has been drastically, irrevocably altered, but it is not gone altogether. Fight against your irrational fears (because trust me, there are plenty of rational ones in our scenarios), and keep pushing into it all to find your “normal” – a sliding-scale word that will likely henceforth only be referred to with quotation marks in your life. Some days, going to the cafeteria for a coffee is going to feel like the pre-cancer equivalent of cleaning your whole house and running all the errands. Victory is sweet.

Also, If you find yourself able to go see one doctor for yourself – make it a dentist. Do I sound crazy? I probably am. It’s hard to think about teeth at all when your baby’s hair is falling out or their nourishment comes through a tube in their veins. Sometimes you spend the day in the hospital and are home for only a few hours before going back and sitting in the ER until 2AM. On these days, self care of any kind feels counterintuitive, but trust me, you don’t want to deal with all the cavities when you resurface from treatment in two or three years, so if you master the whole “leaving the hospital thing”, go see your dentist. I’m saying these crazy things because I care, really.

Next, or probably in truth, even before you go to your dentist, find your “circle”. When it goes public that your child has cancer, a lot of people will want a piece of you and your story. People you haven’t heard from in decades will come out of the woodwork just to let you know they love you and are praying for you and want to do something for your family. It’s amazing and a little embarrassing that something so awful brings so much “special”. However, not all these people are in your fight for the long haul or will speak into your life (as opposed to taking a piece of it), so find your long haulers. One, two, six…the few, the trusted, the prayer warriors, the 24/7 texting-phone-always-on-friends who say they love you no matter what, will help you no matter the time or demand, and only give advice when you ask. These are your people for the marathon. They will be, as my dear friend Judi says: your “stretcher bearers”. Because you will need the holding up – desperately.

Chase with some of his "circle"... #SquadGoals — Chase with some of his “circle”… #SquadGoals

Speaking of needs… it’s okay to be a hot mess. We live in the generation of perfect parents with all things filtered and pinned and the truth is that it’s all too easy to forget that life is messy. No one parent can do all that is thrown at them in a day, let alone all that is expected, and then you add a cancer diagnosis to this guilt-riddled scenario? Well, say goodbye to sanity! Okay, so perhaps that’s a slightly dramatic comment, but I really mean the heart of it. We are broken human beings trying to care for other broken human beings and our bodies are fearfully and wonderfully designed, but year after year of extreme stress, emotional turmoil, sleep deprivation and facing terminal situations all take their tole. I guess what I’m getting at is this: there are many ways to go through this journey, so don’t look to the parent next to you – look to yourself, and don’t be afraid to get help if you need it. Anxiety, depression, and stress are real and devastating on an emotional and physical level. We were never created for this and anyone who Facebook memes you to just be strong…well, it’s nice, but the truth is we’re weak…and that’s not all bad. If you learn anything from cancer, let it be this: life is too short and too precious to be anything other than raw and authentic. Don’t pretend. You’ll be amazed how often your struggles are shared and your words identified with – because we’re all broken.

There are so many other little things I’d love to tell you…from the secret to finding washing machines in the hospital to making time for spiritual renewal, but for now, I’ll close – simply reminding you again that you are so brave and you are not responsible for the weight of the world, the outcomes, or even one whole day. Just take it moment by moment.

Signed with love from the trenches,

Ellie

Burn It

FullSizeRender (52)

On a recent family walk, we noticed an area around the pond by our house where a controlled burn was taking place. Of course, being close to a fire was thrilling to the boys, but as I watched the gray-blue smoke rise into the sky and its sweet and sharp scent reached my nose, I was drawn into the scene as a good metaphor for my life.

The careful watchers along the edge of the burn area, they burned because there was too much unnecessary and it needed to be weeded out and swept away in order for the area to flourish. I want to be careful in this because I’m probably the least likely person to have a green thumb, but I started thinking about how this plays out. To me, proliferation equals productivity and even excellence. But as a favorite old movie quote of mine goes:

“Sometimes more isn’t better. Sometimes it’s just more.”

And it takes things like ER visits and eye surgeries to burn off all the things I want to hold on to, the things I think make me look better – the things that will only hurt me in the end and keep me from growing deep and healthy. The refining was never promised as a painless process, but it has been and always will be worth it.

So, nothing of great length or depth on this Spring morning… just the simple challenge from my own heart to yours:

What do I need to get rid of today?

What do I need to joyfully say “Burn it!” to in order to thrive?

Moment by moment.

“When you walk through the fire of oppression, you will not be burned up; the flames will not consume you. For I am the Lord, your God…” Isaiah 43:2-3

FullSizeRender (53)

Walking Through The Door That’s Been Opened

“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.

Of Eyeballs And Living In The Moment

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.

Moment by moment.

FullSizeRender (18)

Giving What You Have

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.)

Category: Contentment

Dear Hospital Parent

Burn It

Walking Through The Door That’s Been Opened

Of Eyeballs And Living In The Moment

Giving What You Have

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