Tuesday, April 19

A funky pancreas, squeaky joints, and growing faith

A heavy yellow stream plunges through the needle into Peyton's stomach.

"That was easy," he says. And in seconds he is off and running again.

The fluid - methotrexate - is flowing through his veins and, in theory, squashing his overactive immune system, which is attacking his joints.

Officially, the diagnosis is polyarticular juvenile arthritis. Multiple joints affected. Crooked toes, swollen elbows, knobby knees, locked wrists. To look at him, you might only notice his slow gait and stiff run, but there are issues all over.

The drug is hopefully temporary, designed to give a one-two punch to his toughest joints and bring him into remission. From there, we can look at holistic cures. We recently met someone who was managing her arthritis with a Paleo diet.

And in hearing that fact, I know that the arthritis may be easier to live with than the diabetes. Less needles, less medicine, fewer supplies. Peyton will need insulin for life; arthritis might lie low for awhile. And while that's good, right now things are tricky. Peyton has blood tests at his self-named "Room of Doom" every 8-10 weeks. The boy hates the sight of his own blood and starts a mini panic attack if the vial count is over three. Methotrexate is a chemo drug when given in much higher doses, and this doesn't sit well with us. But neither do wrists that don't bend, a neck with little-to-no flexibility, and toes that will probably never go back to normal. This is only the beginning. Left with slower cures, things could progress quickly.

And suddenly we are making big decisions for a kid who really only cares about baseball, gaming, and hanging with friends.

The wondering why comes easier than the answers. Why him? Why is his immune system so wonky? Why didn't we notice this sooner? I'd go mad if I lived in that questioning. These are both diseases that have no specifically identified cause. If the best researchers in the world don't have the answer, I won't either.

And I am strangely okay with that.

I have given up a lot of control in these matters. Because we live in the land of plenty, we have more options - and more options makes us feel more in control. We call the shots, we make the choices, we get big heads over things happening our way, and it's funny: this control is tenuous but comforting, with a side of stress.

Not so in places where choices are so few. Some of these people - impoverished, hungry, unclean, living in meager conditions, at the mercy of dictators and war lords - have a faith that pulverizes mine. They have no choice but to lean into God, drop their heavy loads, and allow Him to provide all that they cannot. They have never called the shots, and that is oddly peaceful in a way, despite their circumstances.

Lean in. 

Diabetes is one of those diseases where the word "control" is tossed around a lot: how is your blood sugar control? are you able to control your A1C number? In many ways, you can be a true manager of this disease.

Then again there are moments of utter nonsense and all you can do is react. I'm convinced nothing will build your faith faster than complete loss of control.

Lean in. Let go. Believe like crazy.

Between both diseases, we are faced with a silly amount of decisions. We are blessed to live where
the opportunities are seemingly endless. I will tell you I am absolutely not taking that for granted.

Because of Scott's insurance, we pay very little for Peyton's expensive medicines.
Because of my job flexibility, I can get him to a 3-hour ophthalmologist appointment to gauge eye inflammation one day, and run him in for quick blood work the next.
Because I live where I do, I have some insanely great pediatric specialty doctors that blow me away.

I know if we were born in a different time, lived in a different place, Peyton's story would read much harsher.

I am grateful for what control we have, and choosing to trust for the rest. God is so close all the time. All the time. Even when we mistakenly think we we don't need Him at the moment, when we think we got this.

We have never "got this." We always need Him.

My doctor asked me the other day what I was doing to cope. I couldn't even think of an answer quickly because trusting God in this matter has become my normal response - just like breathing most days. Normal as in surprised that anyone would ask. How would one make it without? 

But I know. I know because I have tried to do these things on my own. Leaning in is better by far, and a lesson I need to apply to other areas of my life.

Without the lean, there is only loss - loss of hope, loss of contentment. The lean is the only thing that brings peace. I've sought temporary peace in many places - I still do - but nothing beats what radical faith can do. And radical is where it's at. Not halfway faith, but diving-under-it, all-in, what the heck am I doing faith. Faith that comes when you know your control is sketchy at best.

This is the sweet spot.

Friday, March 11

Let's start spreading some insanity

Yesterday at around 4:15 pm, the last of the wispy clouds scudded across the sky, revealing a blue landscape and a bright sun. Kids poured out of their houses. I abandoned dinner plans for "let's just see how long we stay out here."

And, of course, we put up the trampoline.

I am declaring winter as officially over.

Last night, I basked in that exhausted feeling that only comes from too much fresh air. This morning, I read outside, with the sun hot on my face and a warm cup of coffee in my hand. I felt like I could breathe again. The stale air of my inside world was replaced by the pure feel of the outside.

In the same way, I am breathing air again into my faith. I was stretched and tested this winter but am coming out of it a little more reckless in my belief. I'm re-reading the book Anything by Jennie Allen in a Bible study with friends, and I AM TELLING YOU (in all caps AND bold italics so you know I mean business) it is incredibly freeing.

I can't do Jennie's story justice but I'll sum it up by saying she and her husband completely surrendered to God "anything" and their lives changed in bold ways. Not painless ways, not always comfortable ways. But in all they experienced and lived, there was a sense of huge purpose and trust and impact.

Even better, there was insanity.

"God is still not very practical, and to follow him takes trust. Following him completely requires belief that he is good even if everything here and now is not, that he sees us and has an intentional plan for our few years here. We trust in a spiritual person who leads us to do spiritual things that may not totally make sense." (Jennie Allen)

And in the beginning of this journey, she felt she was "spreading insanity."

Sounds good to me. Because my own control or belief that my plans are better has certainly not been working. Living with one foot straddling the line of Trust Him and the other foot in I Want Control has been unfulfilling.

"I know we are afraid of anything too radical or costly. I used to think I would find life in the medium ... But it was really numb and boring and empty, to be honest. Now that I have tasted being all in, I don't want medium. We weren't made for medium." (Jennie Allen)

Words could not be truer. There's a part of my soul that dies in the medium - I feel it. Like I am not living fully. I am safe, comfortable, and moderately happy in the medium, but something about it feels very incomplete.

I am not a risk-taker physically - I don't need to scale Mt Everest or go cliff jumping in Hawaii. I practically panic crossing tall bridges in a car these days. But I see the rush those risk-taking fools feel when they attempt these feats. It's like they come alive only when they jump. And yes, it might seem insane but only in that insanity do we really live.

And so we jump.

My favorite chapter of Anything is a part where Jennie likens our safe, comfortable faith experience to being on a cruise ship that is going down, but the day is so beautiful and blue and we are so comfortable and enjoying ourselves that it's hard to imagine anything is wrong or that we are in any danger.

So we don't heed the captain's warnings. We sit, drinks in hand, relaxing in the sun. "I kept sipping my drink with an umbrella in it, lest they all think I'd gone crazy, running for the rescue boats on a perfectly lovely day."

Can we give up our earthly comfort - and embrace appearing insane - to, as Jennie says, "obey the captain's voice?" Do we really believe that what he has in store is better for us than anything we could possibly imagine?

And if we do, why aren't we running around yelling - Wake up! Wake up! Get off the boat!

God is saying, There's more. There's work I have for you. And only a short time to do it in. 

I want to be insane in the eyes of the world if it means that I will be chasing only God. I don't think anything else could feel as alive, real, big, powerful, meaningful, and wonderful as that.