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.