Tuesday, February 13, 2018


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.

Tuesday, October 31, 2017

And the winner is....


If you've been following our contest for long, you probably know the sad truth that I almost always win, even though Mahon's technical skills are often (though not always) better than mine. Every year, I say I'm sure he's going to win... and almost every year, I'm proved wrong. In our ten years of contests, he's only one twice.

Until now.

Yes, my friends, Mahon is the carver of the fantastically awesome Te Ka Pumpkin B! And with a final tally of 56-13, he takes it in a LANDSLIDE. (...Lavaslide?)


Guys, I can't even be a tiny bit resentful. Even if his pumpkin hadn't been clearly better than mine this year (my vision definitely did not translate as well as I'd hoped), the poor man seriously deserves a victory.

Happy Halloween!

Friday, October 27, 2017

Cast Your Vote In The Eleventh Annual Pumpkin Carving Contest!


Picture this, my friends: The year is 2007. Our heroine, a young college sophomore, has been invited to dinner and pumpkin carving with the family of the boy that she's definitely not dating. And, because the awkwardness of their deeply ambiguous relationship is best masked by rivalry, he issues the invitation thusly:

"I bet I can carve a better pumpkin than you."

Little do our young definitely-not-lovers know, but this will be the start not just of an annual pumpkin carving contest tradition—but of a relationship that will produce one marriage certificate, a string of moves across the American West, and one outsized-personality daughter.

In fact, the night of this very first pumpkin carving contest, as it happens, will be the very first night that our heroine will turn and look at our hero and think: Maybe I could fall in love with him.

The rest, as they say, is history.

.   .   .   .   .

Ten years later, we still celebrate Halloween with a carving contest; these days, we have a theme that we both have to carve to. And each year, we allow all and sundry to cast their votes via my blog. (Previous years can be found under this label, and at my old blog, here!)

This year's theme? Well, we let Kate pick, and it really shouldn't shock you that she immediately shouted "MOANA!" 

So Moana it is.

As always, all descriptions are written by me, and all photos are a joint effort between us both. (And actually, uh, this year I conceptualized both pumpkins, too, though Mahon came up with the design for his entirely.) This years rules, as in previous years, are:

1. Just ONE vote per person... no cheating! If you don't have a Google or OpenID account and so you're voting anonymously, make sure to sign your vote. Unsigned anonymous votes may be deleted. I'll tally votes here, on Facebook, and on Instagram, but please only vote in one place!

2. DO NOT reveal who carved which pumpkin! If you suspect that you may know which pumpkin was carved by whom, DO NOT share that information in the comments. Any comment that tries to spill the carver's identities will be quickly deleted. (Also, we really DON'T recommend attempting to guess whose pumpkin is whose. In the past, guessers have tried to swing the vote for one person or another, and guessed wrong, with disastrous [but hilarious] results. So really, just vote for which pumpkin you actually like better and leave it at that, okay???)

3. Get all your friends and family to cast their votes too! Share on social media! Bug your co-workers!

And now, for the pumpkins.

There's a line where the sky meets the sea, and it calls you—right to Pumpkin AThis year's Carver A decided to depict the quintessential scene: Moana herself, fearlessly wayfinding through the wildest of seas, never deterred from her quest to restore peace to her island. Her hair (which, can we just say, #hairgoals!) blows in the wind as she navigates her craft with its distinctive sail, not for one second scared by the looming wave curling over her boat's bow. Note Carver A's playful attention to textures, as well as the swirling symbol adorning the sail—which, Carver A is not ashamed to say, nearly broke his or her brain in two.



Unfortunately for our young princess—sorry, "daughter of the chief"—on the other side of her horizon awaits this fearsome demon of fire and rock, this year's Pumpkin B. Ever defeat a lava monster? Yeah, me neither. With careful wielding of tools and laborious time and effort, this year's Carver B has brought the fearsome Te Ka to pyroclastic life, complete with both her fiery aura and her desperately angry demeanor. Make special note of Carver B's exquisite attention to detail, particularly in the depiction of Te Ka's charcoal-esque stone skin, through which you can see her molten rage threatening to break free at any moment. Here, our fell foe prepares any second to launch a flaming lava ball towards Moana's boat... and none may know who will triumph!



And only you, my friends, may know who will triumph in this year's pumpkin carving contest! 
Voting will close by 9pm PDT on Halloween night.

You're a long ways past the reef—might as well go vote!

Postscript: On no account may you cast a vote for this pumpkin (all votes for this one will be rejected, so don't even try it!), but we figured we'd show you the cuteness anyway. (Face carved by Daddy, design thought up and spots painted by Kate.)


Tuesday, October 3, 2017

I love sharing your friendship. I don't want to share your germs.

How I dress for church in the fall/winter
months to try to stay cold-free

For many years, I've shared a post about the importance of staying home when you're sick as soon as the first autumn colds start to circulate. As a cystic fibrosis patient, my immune system is compromised, and I have a tendency to pick up any viruses within a hundred-mile radius—at least, that's what it often feels like! Not only am I more likely to get colds and other illnesses in the first place, but those illnesses are nearly always much, much worse for me than for a regular person. What may be a case of the sniffles for you typically turns into a lung infection for me, nearly always requiring antibiotics and frequently requiring a hospitalization or course of home IV antibiotic therapy.

And don't even get me started on more serious viruses, like influenza, which can be a literal death sentence for CF patients. In 2007, while I was engaged, I caught the flu; I was almost immediately hospitalized, and ended up going into the hospital something like 7 times over the next 18 months. It took me at least that long, if not longer, to feel like I was back on my feet health-wise.

Every winter, I personally know far too many people with CF who die—and quite often, the infection that leads to their decline is caused by a cold, influenza, or other virus. And death is only the most dramatic result. Every winter, I also see far too many friends spending months in the hospital, enduring cycle after cycle of body-destroying extra-strength antibiotics, and, like me, finding themselves unable to engage with life at all because their strength is so totally zapped by dealing with persistent infections.

CF patients aren't the only population at risk, either. Cancer patients, transplant recipients, and medically fragile children and adults all can have life-threatening reactions to a virus that, for you, manifests as an annoying case of sniffles.

Every year when I blog about this, I get push back in two primary ways: from people with kids who are sick all the time, and from people who don't have the option of taking sick leave from work. I get that, I really do. I've been that parent before - there have been times where Kate was sick over and over for months in a row. And I understand, also, that there are lots of jobs where a worker is penalized or let go for missing work, regardless of the excuse.

In light of those issues, here are some things that you can do to mitigate the effect of your illnesses.


1. If you can stay home, do so. Postpone the shopping trip. Get takeout instead of eating at a restaurant. Stay home from church—truly. Church is one of the big danger zones for me, because people have a tendency to come regardless of how they feel. Really truly, you can nearly always find someone to fill in if you have something to do, and those of us with compromised immune systems will thank you. If you really cannot get out of a responsibility and must go sick, see #2 and #3.

2. Be honest. If you're going to a gathering where you know that someone with a compromised immune system (or a baby) will be, let them know how you're feeling. Describe your symptoms and let them tell you what they feel comfortable with. Work out a plan you both feel okay with.

3. Wear a cheap mask. You can get inexpensive disposable surgical masks at any drug store. Did you know that wearing a standard paper mask won't actually protect the wearer from viruses? That's why I don't wear one when I'm out during cold and flu season (I actually just purchased a pricey fitted mask in the hopes that it can help me stay safe this winter, but that's not an option everyone has). However, what those paper masks do very well is protecting the people around you from your germs while you're wearing it. If you have to go out while you're still symptomatic, consider wearing one. Also, use hand sanitizer, wash hands frequently, try not to sit close to anyone else, and make sure to cover a cough.

4. Learn to tell the difference between allergies and a cold. If you or your kid has a stuffy or runny nose that isn't going away after several weeks but has never been accompanied by a fever, body aches, or a cough, it's probably allergies... But if that runny nose just started, give it at least a few days before deciding it isn't a cold. Contrary to popular wisdom, a clear runny nose is no safer than a green one, and it actually usually comes at the point when a cold is most contagious (ie the beginning).

Remember how Smoky the Bear said "only you can prevent forest fires"? The same might be said in this case: only you have the power to help make public spaces a safe place for those of us with compromised immune systems to be!

Monday, September 25, 2017

Interview with Akemi Dawn Bowman, author of STARFISH



Today I have the immense privilege of participating in the blog tour for Akemi Dawn Bowman's luminously incredible debut novel, Starfish. Ever since I saw the cover reveal for this book, I've wanted to read it—it's truly one of the most beautifully captivating covers I've ever seen. And the book itself didn't disappoint; Bowman's language is so lyrical and rich, and her story so gripping and lovely, that I absolutely couldn't put it down and read it cover to cover in twenty-four hours (which happens much less than it did before I had a kid!). Starfish is hands-down one of my favorite reads of the year, and I am so excited to recommend this book right and left!

If you're a fan of contemporary young adult, you must add this.  (And make sure you read to the bottom—there's a giveaway involved!)

What's it about?

Kiko Himura has always had a hard time saying exactly what she’s thinking. With a mother who makes her feel unremarkable and a half-Japanese heritage she doesn’t quite understand, Kiko prefers to keep her head down, certain that once she makes it into her dream art school, Prism, her real life will begin.

But then Kiko doesn’t get into Prism, at the same time her abusive uncle moves back in with her family. So when she receives an invitation from her childhood friend to leave her small town and tour art schools on the west coast, Kiko jumps at the opportunity in spite of the anxieties and fears that attempt to hold her back. And now that she is finally free to be her own person outside the constricting walls of her home life, Kiko learns life-changing truths about herself, her past, and how to be brave.

From debut author Akemi Dawn Bowman comes a luminous, heartbreaking story of identity, family, and the beauty that emerges when we embrace our true selves.

Interview with Akemi

1. What was your journey to publication like? Was Starfish the first book you tried to sell?

My journey was definitely long—it was years of consistent hard work, and refusing to give up. It took me four manuscripts to get an agent, and the fifth book I wrote (Starfish) was the one that got me a book deal. I’ve always been very stubborn, so when the agent rejections piled in with the first few manuscripts, I didn’t want to accept defeat. I just told myself I’d write a new book and try again. I did a lot of writing and re-writing, and coming up with new ideas when the old ones weren’t working. And eventually, it worked!

2. What was the seed of inspiration for Starfish? Did it start with a character, a plot, a scene, or something else completely?

Starfish is the book I needed most as a teen. It’s the book that would’ve helped me to feel “seen,” which is something I really struggled with when I was younger. It was very difficult to find books with characters that were experiencing similar things to me, particularly when it came to being biracial and living with social anxiety. And so I wrote this book hoping it would act as a mirror for the people who need it most today.

3. One of my favorite things about Starfish were the gorgeously lyrical descriptions of the artwork, and the way the pictures themselves tell a story throughout the book. Do you have a background in visual art?

Thank you so much! I’ve loved drawing for as long as I can remember, though I’m nowhere near as talented as Kiko. I took two years of ceramics in high school, and a year of painting too. I have a big set of Copic markers, and I occasionally like to get them out and draw a Pok√©mon or two. There’s something about Bulbasaur’s cute little face that relaxes me!

4. What Hogwarts houses would your characters belong in?

Kiko – Ravenclaw

Jamie – Gryffindor

Hiroshi – Hufflepuff

Kiko’s mom – Slytherin

Though, I’ve heard some readers think Jamie should be in Hufflepuff, so my guess isn’t set in stone. I could see him in either!

5. What advice would you give to aspiring authors?

Keep writing, and don’t give up. And toughen your heart a little bit because rejections don’t stop once you find an agent. You’ll get editor rejections. Your agent might reject your next manuscript. You’ll get negative reviews. Your book might not get promoted as much as others do. The list goes on and on. There can be a lot of heartbreak ahead, but also so much joy and excitement too. Just remember to celebrate every single win that comes your way—even if it’s as simple as finishing your revisions! Remember to be proud of your accomplishments, and don’t let outside noise keep you from writing your stories. You can’t control everything about your writing journey, but you can control when your next book gets finished. So stay focused, and write!

Giveaway!

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Saturday, August 26, 2017

overwhelming abundance

I had an experience this afternoon that shook me, and I haven't been able to get it out of my mind.

My family spent the day here working incredibly hard (er, harder than anyone anticipated thanks to our rock solid clay soil) to help us start a deck. I went to Panda Express to get lunch for everyone. The nearby shopping center where the Panda is is a frequent panhandler haunt; it's pretty well trafficked and so especially in summer, people fly signs on the street corners there. I've never seen as many as today—from the man with a purloined shopping cart filled with belongings sleeping, exhausted, in the shade on a hill, to a life-worn woman with curly hair and a dusty vest.

But the people that really caught me off guard was the little family sitting on the median: a blue-eyed mom, two beautiful little girls, a six-week old baby in a stroller, and the dad, who held a sign saying that they had no job and needed to make their rent. I couldn't stop looking at them. Even if this was some kind of scam, I thought, you'd have to be pretty desperate to haul your whole family to a median and sit at cars drove past, drivers studiously averting their eyes.

I took them some lunch and some water bottles. The mother thanked me in heavily accented English. I went back to my car and cried. The car I sat in is our old car—old because we have a new, second car, one we bought because we could afford it and it was convenient. I drove back to our house that is so much space for our little family of three, whose mortgage payment we have never truly struggled to meet.

These moments in life truly pierce me. Sometimes I get caught up in scarcity mentality, worrying about retirement and braces for Kate and other far-off things that are so tangential compared to food and shelter. I feel paralyzed, wishing so desperately that I could somehow make a true difference for the myriad people I know and see who struggle.

There isn't really a point to this post. Nor is there a conclusion—except that life is sweet and life is bitter, and that I wanted to share the portrait of this family with you, because they are burned into my heart.

Sunday, August 20, 2017

on turning twenty-nine for the first, and only, time


Today was my twenty-ninth birthday—for real. We celebrated well at my parents' house, with gorditas, five-layer Chinese bakery rainbow cake, and an impressive Mormon minibar (aka build-your-own Italian sodas). 

My dad teared up talking about how 28.5 years ago, when I was in the process of being diagnosed with cystic fibrosis, they found an outdated book in the library that said I wouldn't live past nine. Later, when the doctor gave them an official prognosis, it wasn't much better—nineteen. 

It's amazing to be a full decade past that, on the cusp of thirty. 

I found myself thinking tonight about my dear friend Kristi, whom I still miss daily, who died unexpectedly nearly a year and a half ago. She was a few years older than I am—already on the other side of thirty—but she, like so many of my friends, will not live to have another birthday.

Our culture has been subsumed by the cult of agelessness; adult birthdays are less joyful celebration and more occasions of dread, and millions of women walk around coyly saying they're turning "twenty nine—again." Every time I hear something like this I find myself wanting to grab the speaker by the shoulders and shake them. Don't you know how lucky you are? Don't you know never to take a single birthday for granted?

So here I am: heading into my thirtieth year of life, determined to live in gratitude, without taking these years for granted. I cannot wait to close out my twenties, to head into a new decade, to swim forward toward numbers I never thought I'd reach. 

And ten or twenty years from now, if I should be so lucky to still breathe, when my silver hairs have taken over, when you ask me how old I am, I will not be answering 'twenty-nine.'