God’s faithfulness – Page 4

I’m A Cancer Mom

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 is what it means for me.

I’m a cancer mom.

In post-op after the MRI - February 2014 — In post-op after the MRI – February 2014

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-

“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…

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)

What Has Been And What Comes Next

It’s been a year since two dear ladies sat with me on a conference call and invited me to submit a book proposal and I’ve had to go back and re-thank them both for the honor I now understand that they were bestowing on me.

One whole year of writing and re-writing, editing and re-editing. Of bloody-looking files filled with red words and notes so prolific and desperately needed that Chase would come up behind me and exclaim: “Hey Mom, it looks like Christmas on your computer! It’s all red and white!”

One year of forming new bonds with a new family who have taken up Chase’s story as their own. They have prayed for him and prayed for me, and have cheered us on and even helped us find beautiful resolution to a story with no ending.

One year that we’ve all wrestled to “get it right” – and wow, is it beautiful. I filled the pages and they turned it into art.

FullSizeRender (15)

I cannot even begin to describe what it was like to put myself back in the rooms, on the ambulances, waiting during surgeries – all of it – and then to dig even deeper into the hows and whys. It’s both broken and strengthened me in so many ways to type the words “moment by moment” all over again through current life challenges and not just past seasons. Oh, God is good as He pushes me to keep seeing Him in all the craziness even now.

So, out of this process that I’ve begun to think of as a fifth pregnancy; after a long labor and delivery, there is birthed a beautiful new baby, if you will…

Chase Away Cancer: A Powerful True Story Of Finding Light In A Dark Diagnosis

My heart is full. I poured everything I had into these pages and they’re FOR YOU.

Where can you find Chase Away Cancer? Amazon, Barnes & Noble, Tyndale Direct, CBD, Lifeway, and more…

When will Chase Away Cancer be in stores? May 1st, 2016

How can I help? I’m so glad you asked! My heart for this book is to be an encouragement to others and also to help raise awareness about what it can look like on the inside of a cancer diagnosis.

So here are a few practical, hands-on way you can join me:

You can take to social media on behalf of the book: Please re-post and re-tweet anything I’m sending out – and don’t forget #chaseawaycancer
You can share the website with friends and family: My new BFF Rachel over at Tyndale designed the most gorgeous piece for www.chaseawaycancer.com, so now, when you go to the main address, it’ll take you right to book information complete with links to major retailers and beautiful pictures, bios, endorsements, free downloads, etc. It’s a work of art – check it out! Um, also? Free downloads. Don’t miss that part.
You can pick a special day to order the book: I’ve learned that sold books are counted not as whole, but by the week, so if you’re trying to figure out the optimal day to order the book, make it May 1st! If we raise the roof over this and hundreds of people are going crazy about the book on that date (and the following week), just think how many retailers and outlets will need to start thinking more about the topics covered within this story as they look at their weekly sales.
You can write a review of the book: After a certain number of reviews (50), Amazon will start to promote the book and suggest it to others. Um, yes, please!

FullSizeRender (16)

Promotion is not easy for me (just ask my realtor husband who has almost lay down and died multiple times with the crazy go-live-in-a-cave-and-not-talk-to-people-anymore things I’ve said over the years), but I’m stepping out of my comfort zone for you:

Because I believe God is good and that’s why I wrote this book.
Because I believe this book is full of things we all face in one facet or another.
Because I believe that if we all start talking about this story, then we all start opening doors and discussions to cancer, the goodness of God in trials, fear, faith, and so many other things.
Because maybe you know someone who needs to read this book even more than you do and you’re the one to put it in their hands.

You guys, I have no idea where this story is going to go, but I can tell you that the very first advanced copy went out on an ambulance. True story. Can you imagine…?

Moment by moment.

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.)

Tag: God’s faithfulness

I’m A Cancer Mom

Way-FM This Week

Of Eyeballs And Living In The Moment

What Has Been And What Comes Next

Giving What You Have

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