Saturday, November 3, 2018

Cast Your Vote in the Twelfth Annual Pumpkin—Um, Curcubit—Carving Contest!


It's everyone's favorite time of year—you know, when we're all spending our time poring over candidates, trying to figure out which option best typifies our values, and heading to the polls.

That's right: It's pumpkin carving contest time!

For the first time ever, this year's pumpkins ended up getting rescheduled until after Halloween, thanks to a combo of complicating factors. But better late than never, and here we are, with this year's candidates!

This year's theme is one we've had in mind for more than a year. In honor of Where the Watermelons Grow being released this summer, our pumpkin carvings are everything Della Kelly (and friends). This time, in honor of our theme, we even have an extra-special addition to one carver's entry. We actually REALLY tried to find full-sized watermelons for us both to carve, but alas: there are no regular watermelons to be had for love or money in November, so pumpkins it (mostly) is.

As always, all descriptions are written by me, and all photos are a joint effort between us both. 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. You can also cast a vote on Instagram or Facebook, as long as you keep it to the official pumpkin carving contest thread on those platforms (it gets too hard chasing votes across multiple threads).

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!

First up! Pumpkin A:




...through the window to the backyard I could see Miss Tabitha. A cloud of bees swirled around her, so many bees that the ends of her blond hair lifted in the wind they made. She wasn’t wearing one of those white space suits beekeepers are supposed to put on to protect themselves from stings—but she didn’t look afraid, not one bit. She looked... at home there, in that storm of bees...
(Where the Watermelons Grow, page 200)

Central to Della's story in Where the Watermelons Grow is the famous Quigley honey, responsible for mending the wounds and woes of Maryville for generations. Whether it's healing a baby with pneumonia, fixing a broken heart, or mending a family feud, the Quigley honey has the ability to bring out strengths inside you that you never realized were there. In their pumpkin, Carver A has used careful shading and exquisite detail to evoke the mystical, magical nature of the Quigley honey threaded throughout the book—reminding the viewer that magic is always so much closer than you think.

Pumpkin Curcubit(s) B:




We’d built it last summer, right by where the curve of Hummingbird Bay met the edge of the Hawthorne farm, and both our daddies hated it because we’d made it ourselves out of old plywood we scavenged from the supplies my daddy used to build our chicken coop last year. Before that we’d spent years playing in an old tobacco shed, but the playhouse was better, because it was made with our own hands.
(Where the Watermelons Grow, page 56)

In a true stroke of genius, Carver B has chosen to incorporate an actual mini watermelon into their design. This carver has used the watermelon to depict Della's beloved playhouse, where Della sits, lost in a book—quite possibly the very Emily Dickinson poems that teach her how to hope when she feels all hope is lost. The watermelon is set into a pumpkin, into which a window is carved with curling watermelon vines below and swaying tree branches above. Of special note is the color contrast provided by the interior of the watermelon against the pumpkin—definitely an effect we've never seen before!

Voting will close by 9pm PST on 11/7. You can destress from the actual election by watching these results roll in just one day later.

Postscript: You can't vote for this one (any attempts to vote for it will be rejected!), but we figured we'd share, anyway! Kate's design this year is a "cheetah underneath a rainbow."


Sunday, August 19, 2018

Thirty, Flirty, and Thriving


It's eleven at night, and tears took me while I was brushing my teeth. I don't know why it was that moment that it suddenly hit me, the realization sinking deep into my bones, tingling on my skin—but right then, I felt overwhelmed with the magnitude of what tomorrow means for me.

 Tomorrow is my birthday—my thirtieth birthday.

 Seventeen years ago, I first read the phrase "average life expectancy" connected with cystic fibrosis. At the time, the life expectancy was 34. It was an enormous thing to grapple with as a new teenager; my thirties seemed so old, so far away, and yet the idea of not living past them felt claustrophobic and, at times, crippling.

 And yet here I am, on the cusp of this new decade, only a little bit worse for the wear—ready to tackle many, many more years to come.

 When I was six months old, my parents were told that I wouldn't live to turn twenty. Sometimes, the last decade of my life feels almost decadent, like a truffle center, unexpected and delicious.

 And here I am, half again as old as that original prognosis.

 I try not to think often about CF and life expectancy. I have enormous anxiety about the future, and compensate by largely pretending it doesn't exist more than two or three months out. But on birthdays, the full weight of that reality hits me a little differently—not as clutching, clawing anxiety for what I might someday lose, but as soul-deep, heart-pausing gratitude for what I've had.

 I don't know what the future will bring. My disease is still unpredictable, still progressive, still incurable. And yet, on this birthday eve, feeling the gratitude for that extra decade warm in my throat, I feel ready to face the future—thirty, thirty-four, and beyond.

Monday, August 13, 2018

2018 Pitch Wars Wish List

The two of us hamming it up at Cindy's Portland book launch!



Welcome to the wish list for #TeamMascaraTracks! 

(That’s Amanda Rawson Hill and Cindy Baldwin.) Sit down and draw up a chair. We've got chocolate, lots of episodes of The Good Place, and—of course—a bookshelf chock full of crying books.



First off, a little about us:

Amanda Rawson Hill: I grew up in Southwest Wyoming with a library right out my back gate. I was one of those “gifted” kids. Smart, overachiever, played a couple instruments, speech and debate. You know the type. I never dreamed of being a writer until after I had kids! I got my degree in Chemistry and now live in Central California with my husband and three kids. My debut middle grade novel, The Three Rules of Everyday Magic, will be published at the end of September by Boyds Mills Press. WHICH IS SO CLOSE!!!


Cindy Baldwin: As a kid, my favorite things to do were either explore the woods behind my North Carolina home, dreaming of fairies and hidden castles, or curl up with a book to read stories that filled my imagination with wonder and magic. In middle school, I kept a book 
under my bathroom sink to read over and over while fixing my hair or brushing my teeth, and I dream of writing the kind of books readers can’t bear to be without! These days, I live in Portland, Oregon with my husband and daughter, surrounded by tall trees and wild blackberries. My debut middle grade novel, Where The Watermelons Grow, was published by HarperCollins in July. In addition to receiving starred reviews from SLJ, Publishers Weekly, Booklist, and Shelf Awareness, it was also an Indies Introduce and Indie Next title for 2018.
After reading and loving each other’s work, and then signing with the same agent, we decided to make the writing twin thing official and become Pitch Wars co-mentors. Destiny sealed the deal when we both got book deals with planned publication dates in the same year. These days, we're child-raising, book-writing, fast-talking, emotion-loving BFFs. Amanda even flew to Portland to MC Cindy's book launch, and Cindy is excited to get to return the favor soon! We don’t shy away from total sincerity and talking about feelings. We love big and we love hard. Cindy is Anne Shirley. (She once really did end up stranded in a river, clinging to bridge pilings, and had to be rescued. It's a long story.)

Amanda is Leslie Knope. 

Together, we head up Team Mascara Tracks. This is our third year as Pitch Wars mentors. 80% of our past mentees are now agented, and two have books coming out soon! Here are some of our success stories:

In 2016, we mentored Kit Rosewater and Cory Leonardo. Kit's entry had the most request of any middle grade manuscript in the contest. Both had agent offers right off the bat, and both are doing awesome things! You can check out Cory's Pitch Wars novel, The Simple Art of Flying, in just a few months—it releases in February from S&S/Aladdin in the US and Scholastic in the UK.

In 2017, we went really overboard and mentored THREE writers: author/illustrator Remy Lai, Karen S. Chow, and Kirk Kraft. Remy's fantastic graphic-prose hybrid novel, Pie in the Sky, sold immediately in a pre-empt to Macmillan/Henry Holt, and will be out in the spring. Karen's heartbreakingly beautiful story about moving on after loss found a passionate agent advocate as well. And Kirk worked incredibly hard to revise his humor-and-heart-filled manuscript while also being one of the most positive and encouraging people on the PW feed.

While we can't promise requests, agents, or book deals, we can promise care, attention, and endless cheerleading. Over the past two years, we've walked mentees through not only revisions and the Pitch Wars agent round, but also deciding between multiple agent offers, navigating an agent breakup, dealing with a querying journey that went beyond the contest, handling nerves on submission, and many other ups and downs that come with a professional writing career. As mentors, we believe strongly in sticking around long after the agent round is over. We've forged good friendships with all our past mentees, and still keep in touch with each of them regularly.

Here are some of the things our past mentees had to say about working with us:

"I had never received such detailed notes on even a page of any manuscript I’d written, and here I’d received a comment on all of it. Comps. Concerns. Structure. Plot. Pacing. Characterization. Theme. Big picture. Small picture. Resources. Everything. I was astounded that they took the time and had thought about my book so deeply and thoroughly….Every. Single. Thing Amanda and Cindy said, every one, was right on. Over the next few months, I grew to trust their instincts more and more. They were always right, and every time I took a little while for their comments to sink in, I’d come to the same conclusion, make the necessary changes, and every time the book was better."
-Cory Leonardo, Pitch Wars 2016 mentee, author of The Simple Art of Flying (Aladdin, February 2019) 

"Amanda and Cindy have the unique ability in plucking key emotions, interactions, and symbols from a text, and carrying those gently forward while rearranging all the trappings around them. Though nearly every word of my manuscript was switched around and deleted and rewritten by the time the agent round arrived, it felt more like my vision than ever. Cindy and Amanda knew what I was after in my writing, and helped me to maintain the things I found most important, even through completely fresh drafts. This is a vital skill to have in the process of revising, and one I shall carry with me forever."
-Kit Rosewater, 2016 Pitch Wars Mentee, MG Agent Round Winner

"Amanda and Cindy are the best!"
-Remy Lai, 2017 Pitch Wars mentee, author of Pie in the Sky (Henry Holt, Spring 2019)

"When I chose Amanda and Cindy as potential Pitch Wars mentors, I had no idea what a huge impact they would have on my writing journey. No idea! Besides helping polish my query and manuscript, they helped me craft pitches for #pitmad and #dvpit (from which I found my agent). They were cheerleaders when I had partial and full requests, encouragers when I doubted my craft, rock-strong supporters when many other mentees found agents and book deals quickly. They understand everything, all of the emotional ups and downs, all of the ins and outs of writing. They’ve answered countless questions (and questions from other mentees) about agents and the publishing biz. (And if they don’t know, they find answers.) They do it all with humility and grace. I was so SO honored to meet both of them in person, and they are as authentic as they are over email. When they say they’re stuck with you for Pitch Wars and beyond, they mean it. And I’m forever grateful to have them in my life."
-Karen S. Chow, 2017 Pitch Wars mentee

"My mentors put me through the wringer but the knowledge I gained and the depth of revision I was forced to complete made me a better writer."
-Kirk Kraft, 2017 Pitch Wars mentee


If that sounds like what you are looking for in a mentor, then let’s go on to what you really want to know!

Our Wish List

Our favorite genres are MG contemporary, Magical Realism (both true magical realism—which comes from traditionally marginalized communities and is aware of the Latinx traditions from which it draws—and literary contemporary with elements of magic), and 20th-century historical. Within those genres we are particularly looking for stories usually labeled, quiet, character driven, heartfelt, and literary. The comedic and quirky is not really in our wheelhouse. That’s not to say that we don’t want a book that has quirky or comedic elements (we love those!), but that shouldn’t feel like the main focus or strength of the story. We want FLORA AND ULYSSES, not DIARY OF A WIMPY KID. We are particularly looking for stories the revolve around big, hard, real-world problems. If somebody has ever said, “Wow, isn’t that a little heavy for MG?”—we want it. If somebody has ever said, “This is really sad!"—we want it. We want to feel something. We want to bawl our eyes out. We want to see beautiful, powerful prose or poetry. We want books that exemplify the quote “When a subject is too hard for adults, I write it for children.” We want books that tackle tough subjects in a hopeful and life-affirming way. We want big philosophical ideas handled with the grace, wisdom and innocence of this age group.

This year, we're not accepting sci fi or fantasy, and likely won't read excerpts that are sent to us in these genres. If you're confused about whether your manuscript would be considered "fantasy" or "magical realism/contemporary with magical elements," feel free to Tweet us! Our list of comp titles, below, might also help clarify what we're looking for.

We also have strong preferences when it comes to historical fiction: We’re not the right mentors for stories where the history or world-building plays a larger role than the character’s arc. We love historicals that focus on one small, character-driven story against the backdrop of larger events that really happened, without spending too much time or detail on those larger events. Basically, if you have the next THE WAR THAT SAVED MY LIFE, well—send it our way! If, on the other hand, you love writing historical because you get lost in the details of the period you're describing, and the period itself is as important as the character arc, we're probably not the right mentors for it. For us, emotions and character arcs are always going to be the biggest draw.



Other things we especially love to see:
  • Diversity (#ownvoices in particular—if you're submitting a story with a marginalized protagonist whose marginalization you don't share, please make sure to do your research and employ sensitivity readers!)
  • Characters influenced by faith but not in a faith-based story
  • Homeschooling!
  • Unique structures and formats (some examples include letters; journal entries; verse—we've both written verse novels and LOVE the genre!; and graphic novels—neither of us have a background in art, but it's definitely in our wheelhouse to work with the text, story structure, character arc, and scene blocking. Two of our previous mentees have had manuscripts in unusual hybrid formats, and they're some of our favorite-ever books! So, if you’re doing something experimental with format, we definitely want to see it!)
  • Chronic illness and/or disability, especially nuanced, disability-positive portrayals that don't end with magical cures
  • Verse! (We realize we said that above, but please. We're nuts for verse! Send us your verse!)
  • Bittersweet endings
  • Anything involving the ocean
  • Strong, vibrant settings
  • Science incorporated in a beautiful, meaningful way! (THE BRILLIANT FALL OF GIANNA Z. or THE THING ABOUT JELLYFISH.)
  • An own voices refugee story (Please!)
  • An own voices story with a Muslim main character, whether or not the plot is about being Muslim (Triple Please!)
  • Books set in countries that don't get as much MG screentime (please, send us the next AMAL UNBOUND!)
  • A story about someone trying to immigrate to America across the Southern border (legally or illegally) or who has just recently done so. Think a modern-day ESPERANZA RISING meets FRONT DESK.


If any of these could be a comp title…grabby hands!

Front Desk, Kelly Yang
Love Sugar Magic: A Dash of Trouble, Anna Meriano
The Penderwicks series, Jeanne Birdsall
Some Kind of Happiness, Claire Legrand
Amal Unbound, Aisha Saeed
The Night Diary, Veera Hiranandani
Paper Chains, Elaine Vickers
Anything by Kate Dicamillo, Sharon Draper, Lynda Mulally Hunt, or Sharon Creech
The Thing About Jellyfish, Ali Benjamin
Paper Wishes, Lois Sepahban
The Key to Extraordinary or A Snicker of Magic, Natalie Lloyd
Counting By 7s, Holly Goldberg Sloan
Love, Aubrey, Suzanne LaFleur
The War That Saved My Life and The War I Finally Won, Kimberly Brubaker Bradley
Hour of the Bees, Lindsay Eager
Amina's Voice, Hena Kahn
Summerlost, Ally Condie
Forget Me Not, Ellie Terry
Root Beer Candy and Other Miracles, Shari Green
Echo, Pam Muñoz Ryan

And, of course, reading Cindy's book, Where the Watermelons Grow, could give you a good idea of our tastes as well! You can also check out a few pages of Amanda’s book, The Three Rules of Everyday Magic, on Amazon. Between the two, you’ll get a pretty good idea about what we love in a voice.

A Note On Animal Stories

Our first year, we took on an “animal story"—Cory Leonardo’s The Simple Art of Flying, about a curmudgeonly parrot. And while we love, love, love her book, we’re going to continue to say the same thing we have said for the last two years. Animal stories are a hard sell for us. They have to be done very well, with a great voice, something unique (Cory’s had gorgeous poetry), and lots and lots of heart. Basically, you need to be able to compare it to FLORA AND ULYSSES and THE ONE AND ONLY IVAN. Cory did, and the comparison held up. We’re definitely NOT the mentors for animal stories that are more humor or adventure than heart. 



Other Hard Sells
  • Sports stories (There are other mentors LOOKING for this. We just don’t love it. Sorry.)
  • Historical fiction from earlier than the 1900s.
  • Anything more plot-driven than character-driven.
  • Anything that could be described with the word "adventure," especially combined with "fantasy." Unless your character's adventure is lived out largely in their own head (a la Bridge to Terabithia or Some Kind of Happiness—SEND US THOSE!), we are just not the best mentors for that! Really, if your query contains words like epic, journey, battle, quest…you should probably not send it to us.


What Will Really Draw Us In?

Voice and beautiful writing are probably the number one thing that draws us to a manuscript—though a great hook doesn't hurt (last year, the fact that Remy Lai's story of two brothers secretly baking cakes together was utterly charming was the thing that made us look twice at her query). We can help you change everything else. But the voice reigns supreme.

We can’t wait to read your work! Putting it out there is such an act of courage and vulnerability. We promise to treat your entry with the respect and love that creativity deserves. We feel so honored by every person who decides to share their story with us. We are excited to meet all of you and your characters.

Check out the rest of the Pitch Wars MG mentors here!



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Friday, August 10, 2018

A Handy Guide For Talking To Your Author Friends


My debut novel, WHERE THE WATERMELONS GROW, has been out for just over a month now. In so many ways, launching this book has been more exciting and fulfilling than I ever could've imagined—seeing others, both friends and strangers, responding to a story I CREATED is never going to stop feeling surreal and incredible.

But I've noticed a weird thing in the month since my book came out. People talk to authors (and, I would imagine, to people of many different creative professions) in some really odd ways—ways they would never talk to somebody in a different profession. Which has led me to embrace a new life motto, a quick and easy rule of thumb to guide you through conversations with the authors in your life:

If you wouldn't say it to a lawyer, don't say it to an author!

Many published authors are people who have spent their lives creating art and dreaming of the day that they'd be able to see their name on a book spine. But we authors are also professionals. Writing is our business as well as our calling; we spend a lot more time answering emails and forcing ourselves to churn out words were we feel utterly uninspired as we spend chasing the Muse. Writing provides at least some of our income, and it's something we hope to keep doing long term. Writing is our career, not our hobby.

So what kinds of things should you think twice about saying to an author?

1. "I've always wanted to write a book. I totally would if I had more time!"

If you aren't telling your lawyer friends that you would totally go to get your law degree if you weren't so busy, then don't say this to an author, either. Pretty much every author out there is juggling a full plate—most work full time day jobs, many of us have kids, and some of us are battling disability or illness also. We don't write because we have an abundance of free time—we write because it's important to us and we make it a priority, even if that means cutting other things out. Just like going to law school requires sacrifices, so does writing. While we get the desire to write a novel, which lots of people find intriguing, comments like these can really belittle the amount of effort we put into making time for our work.

A better way to express this sentiment: "Wow, that's so cool that you've written a novel! I can't wait to read."

2. "If you want to write a book so you can get published and make money, isn't that selling out?" (See also: statements like "If you change your book to match an editor's vision, you've lost your artistic integrity!")

Have you ever looked at a lawyer and thought, man, they must not REALLY be committed to justice, or else they would forego a paycheck? Yeah, I didn't think so. With occupations like lawyers, doctors, or policemen, we can easily accept that a person does a job both because they love it and feel it's important AND because they need to keep putting good on the table. It's okay to want both things! Again: authors are professionals, and as in any job, being a passionate creator and wanting an income are not mutually exclusive.

A better way to express this: Dude, just don't.

3. "How's the book selling?"

Unsurprisingly, this is a question I've gotten a lot in the last month—sometimes multiple times a day. And I get it! It's well-meaning curiosity; often, friends ask me this eagerly, hoping to share in my excitement when I tell them it's doing great. I REALLY appreciate how excited people are for my book, and I'm happy to talk about it! But I want you to imagine right now that I'm looking at you with absolute love in my eyes, putting my hands on your shoulders, and saying:

If you wouldn't go up to your lawyer friend and ask her what her annual salary is or if she's winning all her cases... Please don't ask your author friends about sales. For one thing, this is just an uncomfortable can of worms, since it's essentially asking what a person's income is. For another, it can be a major tender spot for an author who feels insecure about her sales—which is the VAST MAJORITY. And finally, especially in the first few months after publication, an author may genuinely have no idea. Most authors don't have automatic access to that info; many only get it a few months after publication, when royalty statements come in, unless they ask their editor before that. (And there are lots of reasons an author may just prefer not to ask.)

A better way to express this: "Congratulations on your book coming out! That's so exciting." Then, if you wanted, you could add something about how you've seen some positive reviews of the book, or how exciting it is to see it in bookstores when you're out and about, or how much you/your kid/your friend enjoyed it. Focusing on RECEPTION rather than SALES is a good way to go. I promise, NOTHING is going to speak to an author's heart as much as a simple "congratulations, I really loved your book/am really excited to read!"

4. "I read your book, but I did notice a few big issues I thought I'd tell you about..."

Once a book is out in the world, the author has very little control over it anymore. Every book makes it to print with a few typos, even after half a dozen people (or more) have read it! If what you're trying to suggest to an author is a more big-picture, artistic fix, it's almost certainly just a matter of different tastes. Not every book is for every reader, and we authors understand that... but we generally prefer not to hear a blow-by-blow of how you'd have written our books better. If you wouldn't sit your lawyer friend down and tell them all the ways they should've handled their latest court case better, don't do the same to your author friends. Also, if you didn't like the book? That's totally fine! But express that to family or friends, or in a review on social media. Don't share it with the author (which includes tagging them in a bad review on social media). Trust me when I say that by the time a book goes to print, it's been through editorial revisions with multiple top industry professionals. Authors make choices with care and deliberation, putting thought into everything we do. Even if you don't like the book personally, or disagree with some of the choices we've made, acknowledging that there ARE reasons we made those choices can go a long way.

A better way to express this: Yeah, this is another "just don't." ;)

5. To a children's author: "So, are you ever going to write a real book, for adults?"

Look, dude. If you aren't going to go up to your real estate lawyer friend and ask when he's going to become a REAL lawyer, working as a prosecutor, then avoid doing the same thing to an author. Children's books take just as much work, finesse, and emotion as adult books do. Some of us write for children intentionally, because we view that as a sacred privilege, not because we're not good enough to hack it at writing "real" books.

A better way to express this: "So, what is it that made you want to write for children?"

6. "Is your book going to be like Harry Potter?" / "Are you going to meet J. K. Rowling?" / "So, writers make a lot of money, right?"

In addition to going back to the issues with question #3—asking about how much money an author has made—this is also like going up to a friend who's recently graduated law school and saying, "Hey, so you're a lawyer now, right? Are you going to be president soon?" Breakout stars in the book world DO happen, but they're as vanishingly rare as breakout stars in any other field. Your average children's writer has about as much likelihood of being the next J. K. Rowling as your average law school graduate has of being the next president: maybe a little more than the average citizen who hasn't written a novel or graduated from law school, but it's still really not likely. And questions like these can put a lot of pressure on writers, who have as many insecurities and anxieties about their career trajectory as any other artist.

A better way to express this: "Congratulations on your new release—I hope your book does really well!"

7. "When's the movie coming out?"

Honestly, it's about as likely for a movie to be made about the life of your lawyer friend, so. This is another question that can really hone in on your writer friend's doubts and insecurities. Rest assured, if a movie gets made of her book, she will let you know VERY CLEARLY! A close relative of this question would be anything about when the book will end up on the bestseller list (most never do).

A better way to express this: "I enjoyed your book so much. I think it would be a cool movie!"

At the end of the day, the best thing that you can say to a writer friend is something like this:

"Congratulations on your book! That's so wonderful."
"I'm really looking forward to reading your book!"
"I've requested your book at my local library!"
"I hope that your book does well!"
"It's so cool that you've written a book! That's really wonderful."

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!