struggle – CHASE AWAY CANCER

Of A Cartoon Life and “No Trespassing” Signs

Do you ever find yourself wanting to sit back and laugh at your life?

Not a hilarious sitcom laugh, but a “Oh my goodness gracious stars! I cannot even believe we survived the last week!” type of laugh. The incredulous kind. Because raising kids is a crazy business and raising a neuro kid is crazy on steroids (and that can be taken, at times, in the most literal sense).

And what I’m working up to tell you is that Chase’s second eye surgery is tomorrow. You know, because, there’s nothing else really going on this week… HA.

It’s like he could just feel that it is a crazy season. And whether it was his back-to-back surgeries, the general loss of control, all the eye drops and pain… or possibly the name “Lucas” written in blue marker on his arm that he won’t let anyone wash off… whatever it was and quite possibly “all of the above”; Chase went a little off the reservation. Almost every single conversation has been a you-and-what-army authority struggle, he banshee-screams almost as much as he talks these days, and last week, he ran away from home twice and I found him sitting in a neighbor’s tree house, hissing and spitting about eye drops and having to obey and how terrible and mean we were for asking him to help clean up the toys. With his little body sitting rigid and angry right next to the giant, red “no trespassing” sign tacked to the tree house that his cloudy eyes and mind couldn’t read, and my palms sweating for fear that someone would see us and think I was the worst parent in the world, I had little choice but to embark on a round of oratorial genius (read also: sweet talk) and my best hostage negotiation skills, because, you know, it’s Chase. HA.

He’s missed the bus and he’s thrown fits and if I’m being totally honest and slightly comical, an awful lot of the last few weeks has reminded me of this…

Calvin and Hobbes, credit: Bill Watterson. (wikia)

And I share this because today, in the shadow of the second surgery, I need to remember that life hasn’t been pretty, but… we’ve survived. And Chase came safely out of the tree house, and there was even one morning when I could tell he wanted to run away from the approaching morning bus , but something clicked and he attack-hugged me with all his emotional energy and screamed in my ear “Mom!! I’m turning it around!! I’m going to do this!!” And though my neck hurt from his bony little arms, my heart was fit to burst with love and joy. Because sometimes the tiniest moments are huge victories.

Isn’t this just life sometimes? It can be an outraged stand-off, hostage negotiating “I so don’t want to do this” thing. And sometimes it’s just straight up “Please God, not this again…” exhaustion. And other times, something clicks and you get the briefest moment to breathe and rejoice in the total chaos and pain.

So we come to the day before another surgery and I guess I pour out all these disjointed little thoughts because it’s a ways of being raw and honest about life with a neurologically-challenged child. I hope it encourages you that you aren’t alone in whatever crazy “no trespassing”, you-and-what-army struggle you face today.

And Chase, he’s in his hyper pre-surgery zone now. He’s looking forward to a few days off school, some post-op popsicles, maybe being able to see better, and he’s already got “10,000 Reasons” ready to go on the iPad.

This is how we roll…

Moment by moment.

Whatever may pass and whatever lies before me, let me be singing when the evening comes… -Matt Redman, 10,000 Reasons

Book Update

You guys…
Whatever you’re doing… KEEP. DOING. IT.
I found out yesterday that Chase Away Cancer is already ranked in the top 50 “religion and spirituality category” books on Amazon.com , and it’s also within the top 10,000 books on the site.
Doesn’t sound that amazing, right?
IT IS.
There are over 8 million books on Amazon.
So, we’ve been live and official for 4 days now and you are literally pushing this book up and out of “written by a mom in messy sweatpants” to something that people will be looking for and thinking about.
You! Guys!!
And while it’s so nice to have my work acknowledged, I truly believe that this is SO MUCH BIGGER than Chase. I keep thinking of Lucas and Rusty and Julia and all of the parents with empty arms or the parents whose arms are full with endless complications and as you’re sharing about this book, you’re bringing just a tiny bit of their struggle and sorrow to light.

I can’t even…

Just…

THANK YOU.

FullSizeRender (56)

Waiting For The Ship

I can tell you many things, but there is one thing I absolutely cannot even begin to describe.

There is a road I’ve thought I might see from a distance just a few times, but it is one I’ve never yet been asked to walk. However, one of the dear “cancer mama sisters of my heart”, Christina – she was asked to walk this road as her darling Noah went from her arms into Jesus’ on September 27, 2015 at 5:46PM. Just over six months ago now, and if you were to ask her, she might be able to tell you the days and maybe even the hours that have passed too. For Noah was just three when he stopped suffering and his family started anew.

Throughout this time, I have so admired Christina’s strength and faith and so when she opened up her hurting heart just recently, I asked her permission to share her gorgeous, raw words with you. Take a minute and hold her up in prayer as you hold up her honest, heartbroken words, and please, oh, please, let them change you as we live and move among the grieving.

Time sucks.

I am struggling with the fact that as it passes I am moving farther from the time I last held my son. Last held his hand, kissed his cheek, felt him breathe, fed him, heard his voice, and the list goes on. I know with each day that passes I am technically getting closer to the time we are reunited. But being in this middle is hard.
It kind of feels like I am swimming away from an island where life wasn’t perfect but was good, towards a ship that I cannot see but know will be coming to rescue me. The island is moving farther away as I keep swimming forward, but I don’t know when I’ll reach the ship. And in the mean time I’m struggling just to keep my head above water. I know how to swim. And I know I’ll be rescued. But this period of time in the middle is so hard.

[stock photo credit: Pexels]

I’ve been given little rafts along the way, breaks in the pain, but eventually have to keep swimming. I’m trying to see the blessings God is providing. And there are many. Some days I see them more clearly. And other days it gets clouded. As life moves forward I have moments of feeling so alone. Around here it’s not commonplace to have a child die. We don’t see it happen on a regular basis in our neighborhoods, schools, groups of friends… I know it is in many other parts of the world. But our friends, family, coworkers, and classmates get to look forward to celebrating their kids/friends/siblings next birthday. Or look forward to summer with bike rides, pool passes, vacations. We do too, but with one member of our family missing. It’s raw, and devastatingly hard. Winter has been a way to hide from a lot of what I’m scared to face. The sandbox that’s not being played in, Noahs truck sitting in the garage, his bike that he never really got the chance to ride, other little brothers running around outside with their big sisters.

Tonight has been a lot of hard. Really since we came to the year of diagnosis it’s been hard. A lot of emotion and grief overflows. Life is moving forward and I feel like I’m ready for another raft to be thrown. In the beginning there are many, and now I feel like they’re farther apart. Mostly because I’m getting better at swimming. But when I tire it comes out of nowhere and I struggle.

Noah feels farther away, I don’t see a ship, and tonight I’m tired of trying to see the positive in everything. So I’m going to allow myself to feel, to be a little angry, and pray for some relief.

Moment by moment.

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. “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

On Contentment

From my husband Bob (also posted on his Brevis blog) ~

Christians struggle with contentment. I struggle with contentment. I’m ambitious, driven, and competitive by nature, so I struggle to take time off or slow down, and am always looking for something better. When I miss a goal, I mope; when I start a project, I’m already looking on to the next thing that I want to do. I hate to get stuck in a rut. These tendencies have led me to think about contentment, and being satisfied in Christ alone.

What is contentment? Is contentment the opposite of ambition? Can someone be ambitious and be content at the same time? How are joy and contentment related? Can you make it a goal to be more content? How does one practice contentment?

Contentment Defined
Hebrews 13:5 says, “Keep your life free from love of money, and be content with what you have.” It seems like there is a link between money and contentment. And, when I say there’s a link, I mean a reverse correlation: the more money you have, the less content you are.

John MacArthur goes so far as to say that most Americans don’t experience contentment because we are a rich society:

“Most Christians don’t experience it, obviously, to the degree that God desires us to. We tend to be a very discontent people. And I have this sort of personal theory that the more you have the more discontent you become. If that is true, then this must be one of the most discontent societies in the history of the human race. We are called to contentment. We are called to be satisfied. We are called to say I have enough. Most of us don’t experience that. Paul did. Paul was a satisfied man. He was a contented man.”

Jeremiah Burroughs defines contentment this way: “Christian contentment is that sweet, inward, quiet, gracious frame of spirit, which freely submits to and delights in God’s wise and fatherly disposal in every condition.”

Sinclair Ferguson says that “contentment is the direct fruit of having no higher ambition than to belong to the Lord, at His disposal.”

The Opposite of Contentment
The opposite of contentment is covetousness. When we desire something so much that we lose our contentment in God, we elevate that worldly object above God, and place it as an idol over him. When we grumble to God that he hasn’t given us the perfect job, or the perfect family, we show ourselves to be discontent.

My study of contentment led me to a small study of covetousness. In his sermon, “Battling the Unbelief of Covetousness,” John Piper states that “the opposite of covetousness is contentment in God.”

Have you ever found yourself wanting something other than what you have? Have you looked at your neighbor’s house, and said to yourself, “Wouldn’t it be nice to have that house?” Or, have you looked at your job and thought, “I really don’t like my job… if only I could be a _______, then I would be happy”?

Christians battle covetous thoughts every day, myself included. There have been many times when I’ve thought that the grass might be greener on the other side of the causeway. There have been times when I’ve gotten down on myself in each of the following things:

My job—could I be doing something that I enjoy more?
Living in a condo, instead of a house
Driving 10 year old cars, instead of 5 year old cars (or new cars)
My income
My kids (why on EARTH can’t they be well-behaved like the Bauer kids??)
My lifestyle
My physique (though there’s really nothing to complain about here… I’m pretty ripped J)
My wife

Practicing Contentment
The phrase “practicing contentment” seems a little bit ironic. One can be discontent with their discontentedness, and then make a goal to practice being content more often.

Practically, how do Christians practice being content? We live in the most discontent culture in the world, and we’re called to be content in the midst of it. That’s kind of weird (see my past post about being Weird as Christians). Here are a couple of lessons that I gleaned from different sources as I read about contentment (most of these summary points are from John MacArthur):

Contentment begins with confidence in God’s providence – believe in God’s sovereign control.
Contentment involves knowing your own heart. John Ryle says, “Few know their own sin; few feel their desert; and so few are content with such things as they have. Humility, self-knowledge, a clear sight of our own utter vileness and corruption, these are the true roots of contentment.”
Contentment has an element of satisfaction with little.
Contentment is living independently from circumstances, not letting yourself be swayed by your circumstances.
Contentment is being sustained by a divine power – you can be strengthened by the Holy Spirit to be more content.
Contentment has an element of being concerned with the well-being of others.

May we all know contentment, and be able to echo Paul when he says in Philippians 4: “I am not saying this because I am in need, for I have learned to be content whatever the circumstances. I know what it is to be in need, and I know what it is to have plenty. I have learned the secret of being content in any and every situation, whether well fed or hungry, whether living in plenty or in want. I can do everything through him who gives me strength.”

Tag: struggle