If God Is My Joy, Why Does My Heart Hurt?

The turmoil begins sometimes days and sometimes only hours before…

“If God is my joy, why does my heart hurt so?”

“If it is well with my soul, why can I not focus on my daily tasks?”

“If God is my light, why is there a foggy cloud over my heart and mind?

“What if…?”

“We’ve been having such a wonderful summer…it’s unprecedented, really. What if God is preparing us for something bad…”

“Seriously, what if…?”

“…”

The crazy, terminal thoughts roll and pitch, waking and sleeping all because an umbilical cord once attached his tiny body to mine and I still remember the smell of his infant head. It kicks in as surely as I need to eat or sleep and seemingly as biologically too. It’s as if my heart strings are tied to a scan calendar and it hurts.

What do you do with thoughts that are highly possible, but aren’t yet true.

How do you make your peace with the hard things while they loom like a threat on the horizon? 

Even though it’s very unlikely that tomorrow’s scans will yield anything other than stable results, it’s equally unlikely that I will ever stop waiting for that other shoe to drop like it’s 2012 all over again. The peace comes a little every four months, and then as the days and hours draw closer, once again, I realize that my resources were predictably finite and I’m back in the moment of re-learning every lesson I thought I already knew.

Typical. These reminder of pitfalls and brokenness. They seem not to ever leave me, but they can lead me one of two ways: I can veer into the path of self-condemnation, or I can choose to walk the path of my own weaknesses with the help of a Strength far greater than my own.

So tonight, as I grow weary from rounding the corner on the fourth consecutive year of MRIs, and as my sweet bald boy grows increasingly quiet (a sign of his preoccupation) and dons his favorite Spider-Man costume in preparation for fighting the fear, I choose to once again see the brokenness for the road marker that it is: pointing me to the One who never grows weary in our lovingly hand-crafted journey.

Have I said all these words before? I probably have. But tonight, I needed to write them out again because in some ways, this small internet space is like the doorposts of my house. I need to paint it with the truth of life again and again because those truths are all that covers me and my family in the hard days and shadows.

And this boy, when I asked him if he wanted me to write anything special to you on the eve of his test, well, he just told me this:

“Tell them to pray for me, Mom. Tell them to pray for me and nothing else. I’ll just be brave. It’ll be okay.”

Oh Jesus, how we need you in the moment by moment.

Why Your Violence Offends Me

Dear Sons and Daughters with the Guns and the Hate,

Stop. 

Please stop, I beg you.

I may never understand what it’s like to be you and it breaks my heart that I can’t ever fully enter into your personal journey through whatever you face: racism, injustice, marginalization; even murder. My only right to beg for a ceasefire comes from living with a different kind of pervasive threat – in which my child has a less than 20% chance of survival and less than 4% chance of the government ever acknowledging his right to that narrow margin of life. 

I’ve stood alongside bald, gun-less fighters and weeping parents treated both justly and unjustly as they did everything possible to preserve life. And I’ve stood over hauntingly tiny coffins too.

There is very little I can do against the pervasive awful of cancer to preserve life for my baby, but there is so, so much you can do against the pervasive awful of hate-cancer spreading to someone else’s baby.

Did you hear me? You have the amazing ability to give life, not take it!

I’m not suggesting you lay down the fight. In fact, never stop fighting for what’s right and just. Just stop with the guns and the hate. Please, find another way – for the sake of the mothers, wives, and even children with empty arms, for the sake of better, greater, and more: STOP HURTING EACH OTHER.

I truly believe with all my heart that you were made for far better things than this.

Lovingly,

A Mother

Chase Away Cancer On St. Baldrick’s Today

St. baldricks logoThis week, the St. Baldrick’s Foundation is sharing an exclusive excerpt of Chase Away Cancer in order to help promote the book and fund research. When you purchase a copy through their official link [here], they’re donating 100% of the proceeds to livesaving cancer research. 

I’m so thankful for their advocacy and encouragement to our family and so many others like us. Come on over and read the excerpt! It involves our ambulance hitting a Chicago cab. True story.

Here I’ll get you started…


Despite medical intervention, Chase’s fever continued to rise and his heart rate wouldn’t come down. The doctors came and went, talking to us and then stepping out in the hall to phone Chase’s other doctors and make plans.

Chase himself was in fairly good spirits as he’d been given stickers and a comfortable, soft pair of yellow hospital pants, but monitors don’t lie. His heart rate was staying way too high while the fever hovered around 104.

After repeated sessions of consulting with us and stepping into the hallway to get on the phone with Dr. Lulla and Chase’s team, all the white coats concurred: Chase needed to “go home”…

For the rest of this exclusive book excerpt, click here.

Click here for the second part of the story.  -MbM

Of Dragons…

In case your day needs a little smile…

Chase was the dragon in his school play — and do his teachers know him, or what?

He worked so hard to memorize his line: “Need some help. I’m really hot. I could breathe fire, or maybe not.” And at times, it was hard to know where Chase left off and the dragon began.

But oh my heart, have you ever seen a cuter dragon?

-MbM-

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What To Expect When You’re Expecting To Read “Chase Away Cancer”

For the last several weeks, I’ve been getting feedback both on the idea of Chase Away Cancer and now on the finished book itself. Everyone is being so gracious, but there have also been some threads of question and/or doubt woven in that I’d very much like to put to rest.

So, what should you expect when you’re expecting to read this book? Here are the three most common points of feedback that I hear. I hope with all my heart that the answers put your mind at ease and prepare you to join us on the journey.


1. “Well, I probably won’t read the book because I’ve followed along with your blog the whole time, so I pretty much know the story anyway.

Yes…and super, really NO.

Yes, it’s true that if you’ve followed the blog or Facebook page, you have a good idea of where the story goes, however, this book was written from scratch (almost two whole times!) and while it holds some similarities (lessons learned, etc), this is the straight-up, dialogue-filled story of Chase’s diagnosis and treatment. I’m not kidding, you guys. You will be IN THE ROOMS with Bob and I as we make decisions on his treatment and life.

This is unprecedented openness for us — and it is so much so that over a dozen medical staff had to sign off on conversations and use of their real names. It’s so different from the blog in some ways that my own parents (with whom we lived during Chase’s treatment) read the book and immediately called us to say “Wow, we knew, but at the same time, we didn’t know…”

So, to sum up, put all ideas of a yawn fest aside. I kept you faithful story-followers and blog readers in mind when I wrote the manuscript – there will be plenty to learn, and dare I say, even …enjoy?


2. “I really want to support you and everything, but I’m really scared to read a book about a child who gets cancer.”

I would be too.

I can honestly say that if I hadn’t written this book, and somebody told me I should read it, I would probably approach it with some trepidation.

There will be some chapters that you’re going to want to have the box of tissues close, but there are other chapters that will make you laugh out-right and you’ll be shocked that you just giggled over a book with the word “cancer” in it. This is life with Chase. You laugh. You cry. And sometimes, you do both together.

My amazing editor and I (along with a gifted and highly skilled team) worked incredibly hard to make this book “breathable” – ie: you will feel what we felt in the sadness, but you’ll also feel our joy and you’ll find times to “breathe” and take it in as you read. In other words, you’ll get all the feels, but it’s unlikely to blindside you. This was written for joy and grace, not a shock value.


3. “But I don’t have a child with cancer.”

That’s the best news I’ve heard all day!

While it’s true that this book will probably speak most directly to parents of children with cancer, each chapter ends with something God taught us on the journey and the heart of the entire book is that LIFE IS MESSY, but GOD IS FAITHFUL.

So yes, your life might not include cancer, but don’t underestimate how the story might touch you, encourage you, or give you far greater understanding into the life of a friend who might be hurting.

Does that sound proud? I don’t mean it to be — but you guys, throughout this journey, I’ve been amazed that some of the greatest, most touching stories I’ve ever heard about what’s written on this blog came from people who were encouraged and given hope to carry on because they saw their infertility, their disease, their caregiving, their financial difficulties, their selling a house, etc, etc… (seriously, I could go on and on) through the same eyes as I saw a trial of cancer. Yes, my difficulties might look different than yours, but stress is stress and in that, there is a really incredibly universality in Chase’s story.


So, won’t you join us?

*Have other questions or concerns? Please let me know! I’d love to answer them.*

Moment by moment.

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