Meet Jacob, a special friend and member of my church whom I visited this past weekend in Minnesota. Jacob, age 7, had a bone marrow transplant 180 days ago. That's a milestone, but the celebration was rather low-key---we played some Wii (he kicked my butt) and I took his mom out for beers and pub food.
At this point, it appears that the BMT has halted the spread of the ALD, which is cause for rejoicing in heaven and earth. I am so thankful to the as-yet-unnamed guy in his mid-40s who was a perfect match, who gave Jacob a second chance. We will be having a bone marrow registry drive at Tiny Church in November, near the one-year anniversary of Jake's transplant.
Unfortunately, Jacob has been in the hospital since day 60 or so. He's had a whole host of issues to deal with since transplant, including graft v. host disease and all kinds of other stuff. You know those drug commercials where they list all the weird, random side effects? And when you ask the doctor she says, "Eh, I have never seen that happen." Jake seems to have a talent for being the one who gets the weird complication or side effect. He is, to borrow a phrase, the 1%.
You can read his incredible story here, although the latest entry is about me and how I came to be called to Tiny. So let me return the favor by telling you a little of what I saw this weekend.
I saw a kid who was clearly feeling crummy but who complained exactly twice. Who doesn't like physical therapy but who does it. (Sadly, I missed his 2 laps around the floor on the bike on Sunday.) Who speaks up for himself, who's assertive to say what he needs or wants. Who swallows handfuls of pills each day, and pillcams the width of a Sharpie.
Who was stronger on Sunday than he was on Saturday.
I also saw a mother whose frustration and fatigue with the situation has gotta be out of this world but who responded with patience, love and attentiveness to her son. Who spends every day and night with him but who takes time away each day because that's the healthy, faithful thing to do. Who is very plugged into what's happening with her daughter back home in Virginia and who can't wait until she comes out for the summer, even though that means an increase in logistics.
Who went shopping for a wedding shower gift, for heaven's sake.
It's a cliche to call people like this brave. I'm not even sure that's the right word. Because they would answer, What choice do we have?
They do have a choice, though. They can become bitter and defeated and curved into themselves---and who would blame them?---or they can write a journal entry that says, "Enough about us---another family here needs our prayers and thoughts right now."
One of my articles of faith is that people going through hard times are under no obligation to be inspiring to the rest of us. They have every right to be cranky and imperfect, to shake their fist at the heavens.
And when the opposite happens---when grace happens---well, there's nothing for a pastor, or a person, to do but to notice it and name it. To breathe, bask and behold.
Title is a riff on a Carrie Newcomer song (video). "Redemption everywhere I look."
UPDATE: Fixed the link to the family's CaringBridge site.