I write this in the quiet dark of my family room—a clock ticking rhythmically on the wall, my husband and daughter sleeping down the hallway. I write this with tears in my eyes.

This afternoon, Vertex Pharmaceuticals announced that the FDA has approved their third drug to treat cystic fibrosis, Symdeko. This drug is supposed to bring even greater health increases than my miracle pill, Kalydeco.

As I read the news tonight, all I could think of was my friend Kristi.

I met Kristi years ago, when Kate was a newborn. We met in a group for mothers with cystic fibrosis, and bonded quickly over the unusual fact that we were two of the first women in the world to have been pregnant on the then-brand-new CF drug, Kalydeco. Our babies were weeks apart. We called them the Kalydeco twins.

For years, we kept in touch—often daily—as our daughters grew, both of them spitfires with iron wills and mischief in their hearts. We talked about the unique difficulties of CF motherhood; the peculiar situation of starting Kalydeco as adults; the way our disease kept creeping in despite that miracle.

We talked about the trials for the drug that's now called Symdeko.

Kristi was so excited about it. 2015 had been a difficult year for her, and she told me that maybe down the road, when she could start the new drug, it would be the thing to make a difference for her. Enough difference to keep her out of the hospital, home with her little girl.

We had the same genetic mutations, Kristi and I. The same history of infertility. The same miraculous conception story. The same spirited daughters. We even cultured many of the same bacteria in our lungs. She was one of my best friends, one of the people that I went to first when I had an observation to make or needed to vent to somebody about the CF life.

Somehow, I made it all the way into adulthood before a close friend died of my disease. It's unusual, going that long; for years, it felt like it was hovering out there somewhere, a stark inevitably that I didn't want to face. I had close friends decline, go on the transplant list, live on ventilators, barely alive. I always assumed that that would be what happened: that someday, I would have a dear friend slip away by degrees. But it never happened. Each of my friends rallied, each of my friends got their transplant. All of those friends still live, still thrive.

Instead, it was Kristi who died. In a few shocking minutes, out of the blue and with almost no warning, one spring evening in 2016. I didn't believe the news at first. She hadn't been sick enough; she hadn't followed the pattern of a cystic fibrosis death. And yet, it was true.

One minute she was there. Then gone.

Even now, nearly two years later, I find myself every now and then about to reach for my phone, wanting to tell Kristi something about my day. Something that only she would uniquely understand.

I feel that pull tonight. I read the press release, and I want so badly to call her up, to ask her how soon she plans to ask her doctor for the prescription, to ask her if she's excited, nervous, ready. I so badly want Symdeko to be the thing that makes the difference, just like she hoped it would be.

It's strange, the way someone who's been gone for years can still feel like such a present and vital part of your life, of yourself. It's strange, the way that brings almost equal parts pain and gratitude.

Someday, when I get switched from Kalydeco to Symdeko, one thing is certain:

I'll be thinking of Kristi as I swallow that pill.

a tale of early-morning derring-do

*technically these are degu. But whatever. Pretty close.

Guys, I'm feeling particularly awesome today.

Let me set the scene: A rustic home in the picturesque foothills of Oregon's Mount Hood. A mother and her four-year-old daughter tagging along with their extended family on a quick two-day jaunt for spring break. A very, very sleepy mother, who has been woken up twice in the night already to take her daughter, whose pull-ups she forgot, to the bathroom.

The clock strikes 6:50. The groggy mother is awoken by the daughter—who has been sleeping in a nest of blankets and pillows on the floor—standing beside her bed.

"Mommy!" the daughter says. "There is something CRAWLING UNDER THE BED! I think it is a very big spider or ant!"

(The daughter frequently speaks in capital letters.)

The mother peels her eyes open and sits up, only to ascertain about two seconds later that there is no spider or ant:

It is a mouse. A little brown mouse, scurrying frantically from one side to the other.

"A MOUSE!" The daughter exclaims in delighted surprise. "I never saw a MOUSE inside a HOUSE! It is so CUTE!"

The mother things, if we have to set up a mousetrap for this little dude, she is going to be scarred for life.

Thinking fast, she dashes into the kitchen and finds a cereal bowl. "Okay," she says when she's squeezed herself back into the bedroom and closed the door, through which the mouse has already tried and failed to escape. "We're going to trap it with this bowl. And then we'll figure out what to do with it."

"We will take it back to its friends and family!" the daughter declares. "It will miss its friends and family!"

Thence follows an exciting twenty minutes of chasing the mouse from one side of the room to another. Each time the mother gets close, the mouse darts back under the queen-sized bed and out of reach. The mother fruitlessly searches for peanut butter in the kitchen, finding none. "I just want to warn you," she says carefully to the daughter, "that if we can't catch it this way, we might have to use a mousetrap, and the mouse will probably die." 

The mother enlists the help of the grandfather, hoping he'll have a better idea. But just then, as they're waiting for him to arrive in the bedroom, the mouse scurries up the wall, and—

—with reflexes like lightning, the mother traps the mouse under the cereal bowl.

It takes her a few minutes to figure out what to do now that she's got the mouse immobilized under the cereal bowl. Heavy paper would work, but she's pretty sure that none exists in this simply-outfitted vacation home. Finally she remembers that she brought a paperback picture book to read to her daughter at night, and instructs the daughter to retrieve it from the shelf it's on. Ever so carefully, she slips the book behind the bowl, and—the mouse remains trapped.

"Now we can take it back to its friends and family!" the daughter cries. "But... do you know where its friends and family are?"

"I'm pretty sure," says the mother as she puts on her boots, "that they live in the trees on the other side of the street."

End Scene on a shot of the mother feeling sleepy but victorious, and seriously contemplating rechristening herself The Great Cindy, Valiant In The Face Of Speedy Rodents.

this is what it feels like

This post has been bubbling around in my consciousness for months now. More than once, I've thought about writing it and then stopped myself. No, I've thought. I don't want to make people feel bad. I don't want to burn bridges. I don't want to deal with responses telling me that the way I'm feeling isn't valid. I don't have the oomph to listen to people tell me I'm wrong. I just don't have the energy.

But you know what? It's been months, and the grease-fire that is the healthcare debate in our country is just getting worse and worse. Today, the most hardline conservative members of the House of Representatives convinced the White House to strip even more protections out of an already-terrible healthcare reform bill, and they're after even more—including the piece of the law that bans insurance companies from charging more to people with chronic or genetic illnesses. Like, you know, me. And I am left with this burning desire to share these feelings, to speak plain words, to do whatever I can to give people a peek into what it feels like to be a chronically ill, disabled adult with close to half a million dollars a year in medical bills right now. And I'm posting it on my public-facing blog, because this is real. It is important. And I am done being silent about it.

I will not speak eloquently. My words will not be beautiful. They will probably be angry, and they will definitely be stark. And maybe they will make you mad. If that's the case, I'm sorry—except not that sorry, because maybe that anger will also give you understanding, offer a glimpse into the anger and fear and hurt and grief that I've been feeling these last months. Because there has been so much of all of that. So much that some days I feel like I can't function. So much that some days I sit on the couch trying to disengage from news headlines while I hide furtive tears from my daughter. So much that when I gather my nice words to post educational items about healthcare on Facebook, it feels like a Herculean effort, because all I want to do is cry and scream and rage against the world.

Because this is what it feels like, being me:

On November 8th, 2016, you start crying as election results come in and you do not stop for days. You cry in your sleep, which you didn't know was possible. You cry and you cry and you cry and you think, how could people that I know and love care for me so little as to vote in a man who has made it his life work to undo the laws that are the only reason I have healthcare right now?

In the months that follow, you have lots of days where you don't even want to go out in public, don't want to go to church, don't want to run into anybody you know, because if they ask you how you're doing you know that they don't want to hear that you're having an existential crisis over how calmly everybody is debating what your life is or isn't worth.

You have always loved your country. Independence Day is your favorite holiday. But lately, you find yourself hating living here with a passion, fantasizing about moving abroad—and not even because of the superior healthcare, but because you aren't sure you can take another day of living in a country in which people spend their days saying things like Why should I have to pay for somebody who's sick? and you know, even if they don't, that the subtext of that is Why should I care if sick people die?

You get angry sometimes, when friends gush about your adorable child. You want to take them by the shoulders and shake them and shout DON'T YOU UNDERSTAND? DON'T YOU UNDERSTAND THAT THIS CHILD, THIS BEAUTIFUL GIRL WHO DANCES IN SUNLIGHT, IS EXACTLY WHAT'S AT STAKE? Don't you understand that I am fighting so that she can grow up with a mother, fighting so that I can live long enough to hold her own babies someday, as slim as that possibility might be?

You have had setbacks in your access to insurance in the past, but never before have you genuinely thought, I could truly die because of this. But now that thought is in the back of your mind always, always, without ceasing. You tell your husband to freeze your retirement for awhile, not to buy a new car, not to do anything with your first payment from your debut novel. You spend your time thinking of contingency plan after contingency plan. You pray all day some days. And other days, you don't pray at all, because you know that sometimes God allows people to suffer and you can't even bear to think that maybe he could allow your sweet daughter to suffer without a mother.

You cry typing these words. You cry and cry and cry.

Rich men with nothing at stake debate your fate in Congress. Patronizing friends and family assure you that "it will all work out," that "they have a plan to take care of everyone," that "it won't be as bad as you think," that "you have to be positive." And you want to yell, I have ALWAYS been positive. I am an optimist. But these months have buried my optimism so deep I don't even know where it's hiding.

People complain that their healthcare is expensive, and you think: Yeah. Healthcare IS expensive. Because for you, it has never not been expensive; there has almost never been a time at which you weren't paying at least 10% of your income in medical expenses.

People say I can't afford to use the health insurance I pay for, and you think: Good for you. It's lucky that you have that choice. Because no matter how high your deductible has been in the past, you have always had to meet it, because it was between expense and death. Because, in the end, you'd rather be broke than dead.

And through it all—through all the conversations and the headlines and the long, long nights of fear, you are never allowed to forget just how little your country values bodies like yours, just how little most people genuinely care. Sure, they might care about you, objectively, because you're related or because you write funny Facebook posts or because you have interesting conversations. But as a whole, your fellow Americans care only for bodies that are whole and strong and healthy. People talk about "making wise choices" and "saving for healthcare when you need it" and "taking care of your health so you don't need interventions" and you want to rage, scream, throw things, shout about how sometimes you're not lucky enough to be born with genes that work, and sometimes you cost half a million dollars a year in medical care for conditions that are interwoven with your DNA.

You think about all the tiny aggressions you've dealt with in your life—the people who snapped at you for using a disabled placard, or the professors who tried to flunk you because you missed all those classes due to repeated hospitalizations, or all the many, many people who simply haven't understood the reality of your limited, liminal life. And you think about how you always assumed that these were the outliers, the fringe wackos who lacked compassion, the few and far between.

And about how you were clearly wrong. Because now, those who lack compassion are not at the fringe. They are everywhere. They are controlling your government. They are making passionless decisions about whether a body like yours has any value at all.

And you are not sure you have ever felt so alone.

.   .   .   .   .

(Note: I'm disabling comments on this post, and while I don't have the ability to do that when sharing on Facebook, I will summarily delete any comments that tell me that I'm overreacting, that I'm wrong, or anything at all about the ACA legislation. Because this is the very deepest, rawest part of me, laid bare, and I am heartily done debating whether or not a life like mine has value. Period.)

"you might be glad the Lord made you wait"

One night last year, I sat in our blisteringly hot non-air-conditioned apartment during the hottest summer ever recorded in Portland's history, utterly miserable. I'd started the summer off with the most exciting period in my writing life—after a year and a half of querying agents, the second book I'd queried had gotten a bunch of glowing agent requests right out of the gate. This is it, I thought, the idea thrilling through my veins like gold. This is how it starts. This novel is going places.

But then, only a few months later, every one of those full requests had come back as a rejection, one after another after another. And on that hot, miserable day, I'd gotten two rejections back-to-back, from the two agents for whom I had the highest hopes.

I sat on the couch that night, hooked up to my breathing treatments, staring at my computer, unable to muster the emotional energy even to scroll through Facebook. I felt mired in black fog, filled with an unhappiness that ran bone-deep. I couldn't bring myself to write. I couldn't bring myself to catch up on e-mail, or to read a good book, or any of the other things with which I usually occupy my treatment time. I knew, somewhere deep in that depressed fog, that what I most needed was a hint of Godly reassurance, a small bit of direction: Go on, or give up? And yet I knew, also, that I was way too dispirited to try to muddle through the lovely but complex words of a Bible passage.

I opened a browser and said a prayer that was a little stubborn, a little brazen. Lord, please help me to find the message that You have for me tonight, and please let it be on the main page of LDS.Org  (*the website for my church, which often has inspiring messages & videos on its main page) because I don't have the mental energy to hunt tonight.

I typed in the domain name, hit enter, and boom. Within ten seconds, my eyes had fallen upon this headline:

You Might Be Glad The Lord Made You Wait

I stared at it, not sure whether I felt more like laughing or crying at this further evidence of my long-held belief that God, up there in his high heaven, has a pronounced sense of humor. I read the article and then closed the computer. It wasn't the message that I had wanted, exactly, but it was restorative, nonetheless.

.   .   .   .   .

The next nine months of my writing life were, in many ways, soul-crushingly difficult. That book went on to make it into Pitch Wars, get a dramatic overhaul, pull in more agent requests, and then, over the next several months, rack up yet more rejections. By February, I knew that I'd reached the end of the road for that manuscript; I'd queried over a hundred agents, finally gotten feedback from a few of them that showed that my book would really never have a chance in its market without another substantial rewrite, and exhausted the list of agents I'd be interested in working with. It was a dark, dark moment: I had another manuscript that was nearly ready to go out, and I and my critique partners all felt like it had great potential, but I couldn't shake the feeling that my efforts really were all going to be doomed, regardless. I will be doing this over and over again for the rest of my life, I thought. Is it really worth continuing?

I reflected often on the tongue-in-cheek you might be glad the Lord made you wait message from the previous summer. When, I thought, would I finally get to the "glad" part, instead of just the endless "waiting?"

After much agonizing and soul-searching through February, I finally decided not to give up writing, for one simple reason—I'd given up before, and I'd learned that even if I put my fiction aside for years at a time, I'd always eventually come back to it. It seemed best to just plod ahead and avoid wasting my own time, if I knew that would be the case again. With fingers crossed, I finished revising the book I was working on—a middle grade novel called WHERE THE WATERMELONS GROW—and started querying it, including entering it into a brand-new Twitter contest called #DVPit, for marginalized writers with diverse stories. (I am disabled/chronically ill, and WATERMELONS is about schizophrenia.) Within four days of #DVPit, I had my first agent offer, and over the next 10 days I had a dizzying string of further offers.

You might be glad, I thought as I deliberated and finally accepted one of the offers. You might be glad.

A few weeks later, after a round of revisions with my new agent, we sent my book out on submission. And within two or three weeks, we had our first offer. By about the one-month mark, I'd accepted an offer from HarperCollins Children's publishing, for a two-book deal from an editor who gushed about my book in a way that felt utterly surreal.

And suddenly, in that whirlwind summer week exactly a year after the miserable night where I begged for a message from God, I felt it. The gladness. The joy. The gratitude. My previous book, I knew somewhere deep in my gut, would not have done nearly so well, and would not have been as strong a debut novel, even if it had been picked up (which was highly unlikely). And suddenly, I was deeply, utterly grateful for the road I'd been traveling for the past few years, and the place it had brought me.

You might be glad the Lord made you wait.

And oh, my friends. I really, truly am.

the holy midnight work

Canning peaches with Kate

It's hot here in the darkness; damp hair clings to the back of my neck, my clothes feel oppressive and close. The baby pressed against me is warm, a tiny sun who heats the room as we pace the floorboards, bouncing without pause. He arches his back and whimpers, miserable and restless, his nose stuffy and his hands twitchy.

He's not mine, of course. His mama sleeps a few rooms away, and I am only the fill-in, the relief effort. Still, the deep parts of my body remember this, the feel of a baby held just so, pulled tight against me to soothe the restive kicking, the way his arms keep jerking a few minutes after he's finally fallen asleep, his body fighting even after the battle is lost.

It's still in the house: only the two of us are up and moving, locked into our little dance. Iron & Wine plays quietly in the background. My thoughts are slow and centered. I am present in this midnight moment in a way I'm so often not in the sunlit busy ones.

Sometimes it sneaks up on me, this unexpected holiness. Sometimes, in the in and out sandwich-making shoe-finding swing-pushing minutiae of mothering, I forget what mothering really means: Holding another soul in my arms, being the buffer between her and the world as she learns to navigate everything from the proper use of a toilet to the complex and overwhelming universe of her own emotions.

Sometimes I'm so overwhelmed myself that I can't feel the holiness at all—but still, it's there, creeping up on quiet baby-bouncing nights to remind me that oh, this work is deep and wide and sanctifying.

There is much to mothering: to mother is to teach, to discipline, to do strings of endless physical laundrydishescleaning tasks that extend into eternity. But I think, in these quiet hallowed moments where morning is closer than midnight, that really mothering comes down to this: being there open-armed, ready to hold space for the sick baby who can't sleep, the panicked preschooler who can't stop sobbing. Holding them here in the darkness, the warmth of their skin on ours. Whispering over and over: It will be okay. It will be okay.

Finally, as Elizabeth Mitchell croons to the gentle hum and wail of a harmonica, the baby in my arms falls into sleep, his mouth soft and slack, his breathing loud and congested. I sink into the couch, let my own eyes close.

I don't often feel the holiness in this work that is motherhood, I think as the stillness enfolds me. I don't always see it.

Still, it's always there.