Tag: fear

Weeds and Worry

There is a patch of dirt that lies under the front windows of our little blue and brick house. It borders the sidewalk that runs from the door to the driveway and in this place, beneath the shallow layer of dirt lies very old concrete. And on top of the concrete are small landscaping stones long buried. Very little grows in this small place besides weeds. The weeds come every year no matter what I do, and they drive me a little crazy, because I like things clean and neat and orderly – especially when life feels anything but… 

So each summer, sooner or later, I can be found on my hands and knees on the front walk, shoveling mulch and declaring war against new weeds. 

This summer, not so very long ago, I was in the middle of my little war, hands stiff and crusting with that dried dirt feeling, when Chase came over to me.

He was out of breath from riding his bike and he doubled over next to where I crouched, his hands on his knees, arms stiff. 

“Why are you worrying about this, Mom?”

I was not into this parenting moment, my voice pulling short like the torn roots in my hands. “Because, Chase.” 

I reached for another weed, trying not to think about how tired he sounded from a normal activity, how white his skin looked despite the warm sun that should make it rosy from exertion.

“Mom…” His small hand landed on my shoulder then. His voice too old for his body. “Mom, don’t worry about the weeds.”

I can never resist his heart to reassure, my own melting at his words even as I stubbornly fought to explain. “Chase, this is part of my job…part of how I care for our house and our family.” 

Could he not see how much I needed just one thing to be right, to go right, to line up in that moment?

He shook his head. “But Mom, sometimes there are weeds in life and it’s okay. Don’t worry about them. Just take a deep breath. It’ll be okay. Don’t worry about the weeds, Mom.”

Sometimes things aren’t the way we want them to be. The dirt patches of life feel too small, too clogged, too messy.

We toil and weep and things still crop up over …and over again.

Like weeds…

Like fear… 

Like doubt…

It’s easy to get on our hands and knees over these places; to obsess. 

But as Chase said… it’s okay, dear ones. At the end of the day, these weeds are a futility and not the ultimate focus. So weep, but don’t obsess, because there is a better rest to be had. Get up off your hands and knees and give the uprooted pieces to the One who can handle them better, best and forever …and take a deep breath. 

Do you feel His hand on your shoulder?

Moment by moment. 

“But when I am afraid, I will put my trust in You.”

Psalm 56:3 (NLT)

**On Wednesday, October 14th, Chase will be undergoing a bone marrow biopsy. Thank you for your prayers, dear ones. MbM.**

Yes And Amen

This coming Monday morning, we will stand outside the MRI machine and wait on our unconscious, brave boy once again.

There is no such thing as an unimportant scan for kids like Chase, but this one really is important and different from the others in a new way because, if, (yes, Lord, please…)… yes, if Chase’s results are stable, this month will hold his last round of appointments with his current neuro-oncology team. If he’s stable, he’ll be moved to a different clinic at Lurie with different doctors and staff, better and more equipped to deal in the living with cancer instead of the dying with cancer. Does one “move on” from cancer? Ha. But one can certainly get to another level in the game.

Having this bittersweet moment in sight feels like a tempting of fate. And the changes come and go with the days, weeks, and months, but the whisper is always there, stronger in the weeks preceding a scan – especially a big one: “It might come back. This might be it…” That moment I’ve tried a million times to imagine and prepare my heart around — even when I know I can’t. And the pre-MRI days hold a desperate struggle, but it’s hard to pinpoint the source of the black mood wrestling.

Is it fear?

Is it a renewed in-your-face realization that we are disgustingly powerless in this life?

Is it anger at staring down my own weaknesses and learned lessons over again?

The answer is probably yes, yes, and more yes.

But you know what else is, are, and ever will be yes? …yes and amen?

THE PROMISES OF GOD.

Don’t be afraid, for I am with you.
    Don’t be discouraged, for I am your God.
I will strengthen you and help you.
    I will hold you up with my victorious right hand. Isaiah 41:10

And yes, the worst may prove true on the scan, but there is someTHING…someONE who proves MORE TRUE.

Every word of God proves true.
    He is a shield to all who come to him for protection. Proverbs 30:5

Bring it on.

Moment by moment.

Chase with his favorite hospital security officer, John

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.

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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

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.

 

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On The Unknown Road

The cold snapped in the air as the sun shone distant and too bright through the windshield of the car as we traveled along the road.  Chase’s first day of therapies.  A new building, new people, new things to be learned…the start of a new chapter.  And with the new, came the old and familiar: the fear of the unknown and the question – what lies ahead?  Always that question.

Chase’s high voice pierced the questions gripping my mind like my hands holding the steering wheel.  photo 2 (1)“Mommy? Where are we?  This is not the road to my hospital.”  For this is how Chase tells direction.  There is the road that leads to his hospital and then there is every other road ever made.  I answered and assured him that this road was a good road and that it was the way to his new therapy – therapy that would help him grow strong.

Silence followed for a brief second as he processed what he’d heard.  Then; “But Mom, are we late?”

“No, Chase.  We aren’t late.  We are right on time.”

Another moment of silence, then his voice again, this time with anger, “But Mom, this isn’t the road and we’re late!”

Steeling myself for the familiar exercise of reasoning with the irrational; I responded: “Chase, this is the road and we are not late.”  I received nothing but an angry growl and the reiteration that I was in error.

How many times would I need to speak truth to him before he heard?  

Finally, this; “Chase, do you trust me?  I know this road and I can see the clock. I know where we’re going and I know that we’re not late.  You don’t know this road, but I do.  I’ve driven on it before and I know where it goes.  Chase, you’ll just have to trust me.”

The petulant retort; “Mom, I can’t trust you because I cannot see the road and I cannot see the clock.  You can; but I cannot.”  

Suddenly, his voice was mine….mine to my Creator who speaks truth to me and calms the questions and fears at every turn.  He tells me that even though I don’t know the road, He does.  He knows where it goes and what’s along the way.  He knows the timing of it and how it will take me to places that will be hard but will make me stronger.  And I sit, petulant child that I am, and question trusting Him because I don’t know what He knows and somehow, in my small heart and mind, that makes Him seem less good and my fears seem more justified.

In that moment, that silly short moment of driving across the city, in the child voice from the back seat, I was reminded how good He is to me and that I don’t have to know what lies ahead to trust and follow.

Moment by moment.

For I know the plans I have for you, declares the Lord, plans for welfare and not for evil, to give you a future and a hope.  Jeremiah 29:11

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