Friday, July 1, 2016

You Are The Bright Spots

Today has been a hard day. The culmination of a pretty hard week. The culmination of a pretty tough month. The culmination of a pretty tough year. There have been so, so many good things in this past year (and day, and week, and month), but also a lot of sickness, and a lot of pain, and—this month—a number of conditions that have been debilitating to the degree that I've spent more days than not pinned to the couch, trying to entertain my increasingly anxious and restless toddler.

Today in particular, I've had pain that began as a current this morning and has increased all day to a thundering, howling, impossible-to-ignore crash and roar. I cannot move without pain, can't breathe without pain. Kate has spent the last two days in nuclear meltdown mode as I've become ever more incapacitated.

It's been tough.

And this evening, when I felt like I was reaching my breaking point, I took to Facebook. I've tried so hard not to whine and bellyache all month, but tonight I just needed something to focus on other than my rough evening. And so I asked for funny or fascinating things from my friends.

And oh, did you deliver. Ridiculous memes. BB8 videos. Mr. Bean photoshopped into every movie ever made (some of those are really creepy, I won't lie!). Lame jokes, sly jokes, gut-laugh jokes. Inspiring quotes. Beautiful music.

All evening I've been checking on that Facebook post, now so full of links I haven't even been able to read/watch/view them all yet. I've bookmarked it, to come back to in the future as my own personal store of sunshine. And I've been remembering every time I did:

Usually, I don't feel like social media is the place to bare my inner soul, especially the part of my inner soul that has a tendency to pity parties and whining. But sometimes, it's okay to open up and admit that I'm struggling. And sometimes, that opening up is rewarded by the most incredible outpouring of love, support, and ridiculous GIFs in the history of the world.

And so this is what I have to say tonight. You my friends: You are the bright spots. In my day, in my week, in my year, in my life. You are rich and wonderful and loved and loving. And I am blessed by association with each one of you.

Today has been a hard day, the culmination of a hard period of days. But tonight's pain is rendered so much more bearable by each and every little gift-link I've been given.

So thank you for that, my friends. Thank you.

Saturday, June 4, 2016

Faking It Till You...?

Here are some things I am frankly terrible at:

:: Kindness
:: Generosity
:: Celebrating others' successes without jealousy

Here are some things I've been complimented on of late:

:: Kindness
:: Generosity
:: Celebrating others' successes without jealousy

In the last six months, all the parts of my brain that haven't been focused on moving, being ill, and parenting through one of the most difficult stretches of Kate's life to date, have been dedicated to writing and my writing community. And in those six months, more than once, I've had someone thank me for being kind, generous with my time, rejoicing in my friends' successes.

And it's got me thinking about a question I come back to every now and again: Is what matters the way you feel about something at your heart-and-mind-level, or the way you choose to act on it? In my heart I am, all too often, a small, petty, jealous, mean-spirited individual. Usually, because I am so steeped in my own feelings, that's what seems to matter most. But is it? Do emotions or actions most define a person?

As I talked about this this morning with Mahon, he pointed out that during his forty-day wilderness fast, Christ was enormously tempted to abuse his power, and yet it's the fact that he chose not to that we remember. Likewise, I've always loved the fact that we see Christ's moment of weakness as He suffers in Gethsemane and begs for the bitter cup to be lifted from him—and yet, even as he's wishing not to have to carry through with the supernally difficult task he's agreed to, he is still making the choice to cede to His father's will.

I still feel like I have eons' worth of work to do on growing my heart, being the kind of loving and generous and selfless person that I'd like to be. I know I am far from there. But it's nice to think that sometimes, maybe, working hard to act on something you don't feel really can translate into something worthwhile.

Sunday, May 29, 2016

The Post I've Always Wanted To Write: How I Got My Agent

For the last two years, I've been working hard on getting an agent. (If you're not sure what that means, go read this post!At times it's been so soul-suckingly hard that I've come close to quitting writing altogether. In that two years I queried three books and racked up a total of 145 rejections, 112 of which were all on the same book (that was especially soul-sucking). After querying that second book for the better part of a year and getting lots of interest, but having every single one of those interested agents eventually pass, I was at an all-time low point in my writing career. In February, I came genuinely close to just giving up on my fiction, and really the only thing that stopped me was the fact that I've tried to quit before and always been lured back by the siren song of storytelling.

Instead of quitting, I slogged my way through revisions on a new novel—a middle grade (ages 8-13) magical realism book called WHERE THE WATERMELONS GROW—and, when it was as good as I could make it, I started querying that one. I sent out my first few queries in mid-April, and got a couple of full requests right off the bat, which was exciting but not nearly so exciting as it would have been had I not had the sad experience of 21 full requests all turning into rejections on my previous book. I oscillated wildly between hopefulness and despair, convinced I'd never be able to write a book that consisted of more than just pretty words (my strong point).

A week after I started querying I entered a Twitter pitch contest called #DVPit. During a Twitter pitch contest, authors craft a brief pitch (it has to fit into Twitter's 140-character limit, including hashtags that identify it as part of the contest) and tweet it several times during the day. Agents who are interested in whatever genre or specialty the contest emphasizes can scroll the Twitter feed for the contest hashtag, and favorite posts for books that they're interested in seeing. #DVPit is a brand-new, very unique contest, focused on diverse stories by marginalized authors (including disabled authors). I entered #DVPit hoping for the best, and my expectations were wildly exceeded: By the next day, I'd had requests from 21 agents.

The next four days of my life were comprised of quite possibly the most nail-biting anxiety I've ever experienced. By the fourth day, I'd hardly slept and had managed to scratch the skin off one of my fingers and one of my kneecaps through sheer nervous habit. By the morning after I'd finished sending materials to 17 of the 21 interested agents (who typically wanted to see a query and first few chapters, but sometimes requested a partial right from the contest), I'd had five full requests in less than 24 hours. The next day, I had an e-mail from an agent who was part of the way through my book, loving it, and wanted to know what other projects I was working on. While that sort of e-mail doesn't always turn into an offer, it often does, and I'd never received an e-mail like it before. The next 24 hours felt agonizingly slow, and it was all I could do to avoid checking my e-mail every two seconds.

And then, the next day, I got another e-mail from the same agent, asking to set up a phone call.

As you can imagine, the time between that e-mail and the actual phone call (blessedly only the next day) was yet more stress and anxiety. Right before she was scheduled to call, I was certain I'd either throw up or pass out. But then the phone rang, she made it clear within the first few minutes of our call that she was offering representation for WHERE THE WATERMELONS GROW, and we had an absolutely delightful chat. And just like that, I was on to the next stage in my writing journey.

Because I had so many other agents still reading all or part of my book, the traditional thing to do was to e-mail them all notifying that I'd had an offer and would be making my decision on a specific day (I chose a day 10 days after my first offer). I spent several hours after that first phone call sending out my nudge e-mails. Within minutes, I started getting more requests from agents who hadn't had a chance to see the full before now but were interested in reading. By the next day, I had a second offer from another stellar agent... and nine days later, by the end of my deadline period, I'd had a whopping seven more offers (for a total of nine). When a tenth agent offered two hours after my deadline passed, I no longer even had time to take her phone call. That ten days was hands down the craziest, most exciting, most overwhelming, most shocking experience of my life. To go from being the girl with 145 rejections to being the girl with 10 offers was beyond surreal.

Due to the large number of offers I'd had, I ended up needing to take a few extra days to make my decision. And it was tough. All of the agents who had offered were top-notch, and many of them comprised my list of "dream agents", the kind of people I never in a million years would have dreamed would offer on my book. The enthusiasm and love they'd all shown for my story was absolutely unreal, and winnowing my options down felt impossible. 

On the very last day of my decision period, one agent started edging to the front of the pack. She was incredibly kind, had an unbelievable reputation in the industry, and her ideas for how WHERE THE WATERMELONS GROW needed to be revised lined up very well with my own ideas about the book's weak spots. She also was very accessible and supportive, and a fast reader—things that were important to me. The clients that I spoke to raved about her (including one who happens to also be one of my critique partners and very dear friends!) By the end of the day, I knew that I'd made my decision, and I accepted an offer from Elizabeth Harding of Curtis Brown, LTD. 

Any of the agents who offered would've been incredible advocates for my book, and it broke my heart into tiny little pieces to have to send so many rejections (I have no idea how agents and editors can survive rejecting so many people all the time!!!). But Elizabeth's vision and enthusiasm for my story have been infectious, and in the few weeks that we've been working together I've already been amazed by how efficient, focused, and kind she is.

To finish this post, here are some ridiculously detailed stats, because that's what I always want to see on other peoples' agent posts:

24 cold queries sent
4-5 full requests before I entered #DVPit (One was a referral and the agent asked for the full as part of the referral, so not sure if that counts)
21 contest requests, 17 sent (some were from the same agencies)
5 contest upgrades before offer
6 contest upgrades after offer nudges
7 query full requests after offer nudges 

Total offers9 offers within deadline, 1 two hours after deadline, 1 R&R the next day. (5 of the offers were from the contest, 5 offers and the R&R from query nudges.)

Wednesday, May 11, 2016

Texting Kristi

It happens several times a week—sometimes several times a day. I reach down for my phone, the words already running through my head, and then I stop. Let the memories wash over me again. Put the phone back down.

.   .   .   .   .

I "met" Kristi three years ago, when our babies were new and our stories—two of the three or four women in the world to stay on a groundbreaking new medication (Kalydeco) while pregnant immediately after its FDA approval—were similar. We bonded over the commonality of our health experiences, the way that even as newborns our daughters were proving to be more than the ordinary blend of stubborn and sleepless. We texted about baby woes and gossiped about people we knew. (As our daughters got older, there was a lot of "OMG, did you see what so-and-so posted about how "hard" her newborn who sleeps 8 hours at night is? haha she's in for as surprise!") When they were three or four months old, we even discovered that our daughters owned matching dresses, and from then on we called them the "Kalydeco twins."

Kristi and I came from entirely different worlds: Different parts of the country, different family situations, different lifestyle choices. And yet somehow, that handful of things—our similar children, our similar experiences charting a new course for the world of medicine, our similar dry but practical sense of humor—brought us together. As the years passed, she became one of my dearest "cysters", one of a small number of people I went to with whatever happened to be on my mind.

.   .   .   .   .

Maybe fifteen years ago, cystic fibrosis researchers discovered that when CF patients are together in close proximity, they end up sharing their particular bacterial lung infections with one another—infections that 99% of the regular population aren't susceptible, but that can spell death for a CFer. This principle, known as "cross-contamination," has come more and more over the last two decades to guide rules surrounding CF patients meeting face-to-face have become increasingly stringent. In the last two years, the Cystic Fibrosis Foundation has gone to recommending that CF patients who are together stay six feet away while wearing masks, and they've mandated that only one patient with CF is allowed to attend a CFF indoor fundraiser or other activity.

And so because of this, the lifeblood of the CF community exists online, because behind our computer screens, we are no danger.

It leads to a strange sort of intimacy, intense and long-lasting friendships that can exist even if you go your whole lifetime never hugging, never seeing her face except through a photo.

.   .   .   .   .

I was on my way out the door to book club, almost exactly two weeks ago, when my phone buzzed. I looked down to see a text from another CF friend, a text punctuated with half a dozen exclamation points, a text I couldn't possibly process. "Kristi died!!!!!" it said, comical in its insistence on such an impossible thing.

Every CF death is shocking, every CF death is a cause for mourning. It's never normal to watch somebody take their last breath at 23 or 32 or 45. It's never normal to realize with the wind knocked out of you that you'll never again see that person smiling through her pictures, pursuing her dreams, writing snarky comments about the intensity of a hospital stay or CF therapy regimen.

But it's even more shocking when it's utterly unlooked-for, coming suddenly for an otherwise healthy person. There are levels of cystic fibrosis decline. And while those of us on the milder end of the spectrum may chafe against the insinuation that our disease is insignificant, and while it's entirely possible for a person to lose vast swaths of lung capacity in days after contracting the wrong virus and equally possible for a person to hang on for years and even decades with a third of a normal person's lung function—these stages of decline still provide a rubric, a way to gauge how likely it is that a patient's situation might become dire at the drop of a hat.

Kristi was not end-stage. She'd had a rough few years, in and out of the hospital, but her lung function was nearly as high as mine much of the time; she was sick, and miserable, and intensely frustrated with the way CF was blocking her into a lightless tunnel, but she wasn't likely to die unexpectedly, without warning, without a steep decline predicting her fall.

And yet, she did.

It was a freak thing, the kind of CF-related death that is so incredibly rare I don't think I've ever actually heard of it happening to another person that I know. It came quickly, horrifyingly, in a way that still makes me feel nauseated to think of. And all of a sudden, without any kind of warning at all, she was gone, and her daughter was motherless, and instead of going to book club that night I stayed home and cried and cried some more.

More than anything else, that first night, I had to stop myself from reaching for my phone to text Kristi. The strangest thing just happened, I'd have said. Somebody told me that you were dead....

.   .   .   .   .

In the days since Kristi's death, those unwritten texts have piled up inside my heart. One day, I wanted to text her about how I'd lost weight but still had a postpartum-shaped body and so none of the six pairs of jeans in two sizes I owned fit me—oddly-shaped bodies with wildly fluctuating weight are a hallmark of adulthood for CF women, and something Kristi and I talked about often. Another day, I wanted to hear her thoughts after reading a post in our Facebook group for CF mothers that had me rolling my eyes. Another day, I wanted to tell her how Kate had spent the morning jumping on a trampoline and still had energy to burn—our daughters' wild intensity was something we spoke of often.

Sometimes, I still want to text her the way I did that first night. Can you believe that we all fell for that? I'd say, and we'd laugh, and then we'd send each other pictures of our girls with nebulizers in their mouths, and marvel once again at how incredible it was to be here, entering middle age together, achieving dreams nobody would ever have guessed this pair of 1980s CF babies would live to see.

Sunday, April 17, 2016

C. Kate Grow: 3 Years

Darling girl,

Here you are, three years old. It feels like well and truly the end of your babyhood: you run so fast, now, on those legs that have grown an inch and a half since Christmas; when I pull you onto my lap you don't fit anymore, your gangly limbs hanging off my, no longer tiny and compact and sized for my arms to hold. When I kiss you this week you tell me "Ew, Mama, a slobbery kiss!"—and when I hug you you wrap your arms around me lightning-quick and then are off, off to something stranger and wilder, off to grow even taller.

This third year of your has been tumultuous. A day after your second birthday, we packed our possessions and drove to Oregon, to start a new life here amid the green and the wet. I write this now sitting on the new sofa in our new house and looking out the window at our backyard with its three towering maple trees. It's starting to take on the trappings of summer, that backyard: a plastic slide, a tree swing, a hammock, giant bubble wands, sidewalk chalk ABCs scrawled across the fence boards. It's strange, to think that a year and two months ago, we had no idea this life was coming, crouched waiting on the horizon to turn our worlds upside down. Moving twice in a year (first to an apartment and then a home one city over) was difficult on all of us, and you've done plenty in the last year to try our patience and our hearts. There have been days of tantrums and nights of hysteria, moments when your own intensity has risen up inside of you and your eyes have been full of fear.

But there have been so many good things about this third year, too. You are full of words; they pour out of you all day, often all night, too. A little linguist, you've been playing word games since your second birthday—creating words that you never can remember a second or two later, rhyming, singing, replacing all the consonants in a sentence so that every word starts with "b" or "g" and your own nonsense sends you into a rain of laughter. You tell us stories every day about the various schools you allegedly attend: elementary school, flower school, heart school, "high shoe" school. "Look, Mama," you told me one day, pointing to a contrail-creating airplane, "There is a plane drawing a cloud!" When I asked you how you knew that, you responded that you'd learned it at school—your favorite response to our curiosity about where you've picked up random facts.

You are filled with energy, rough-and-tumble, hopping in place endlessly when you're excited and running and climbing and jumping on everything that might be run, climbed, or jumped on. Still, your focus can be tenacious: You could spend all day, every day, making up conversations between any object that will stay still—your dolls, your stuffed animals, your Little People figures, your matchbox cars. When none of those are available, you'll start telling us about the adventures of "Mama Hand and Baby Hand" or "Mama Hand and Dada Hand and their children who are fingers." Daddy and I are both heartily, thoroughly tired of being commanded to "talk the dolls with me!!!", as is anyone else who regularly interacts with you.

And that is another thing about this year, silly girl: The commanding. Oh, what an opinionated little person you remain, with such clear ideas on how everyone around you should behave at all times. When the three of us are in the car, you'll shout imperious commands that don't usually make sense: "Okay, everyone, now say the word 'curmectid!' No, say it all together!" You are filled with strong convictions about how the world should be; a week before your third birthday, you—completely out of nowhere—announced that you wanted to grow your bangs out. You are crafty and inventive, too; a few weeks ago, when I told you that you couldn't marry Daddy because he was already married to me, you took that in stride but later retaliated by sweetly informing me that you were Mama Cindy now and I was your child, Kate.

It is a daily delight to hear the things that come out of your mouth—surprisingly deep thoughts and observations, utter nonsense, vast portions of Horton Hears a Who, right at the moment. ("'I think you're a fool!' Laughed the sour kangaroo, and the young kangaroo in her pouch cried 'Me too!'") Suddenly you move through the world much less like an individual who was a baby only seconds ago, much more like a little person with big thoughts and ideas and the ability to communicate them infinitely. I love the way that your real knowledge is interspersed with invention: You know most of the alphabet, but are pretty sure there's a letter called "kell-um-enno-pee"; you can count to thirteen, but after that proceed to "eighteen, tenteen, oteen." Your speech is shockingly precise for a child your age, but you still want to check out books from the "li-bo-way." You know your left from your right and know exactly which shoe belongs on which foot, but still choose to wear them on opposite feet 75% of the time.

There is something charming about being caught here, well and truly out of babyhood but only just begun on the path of childhood, so many revelations yet to come.

Age three is already proving to be a wild ride, dear little one, and I pray we can all survive it with our sanity intact. Still, I can't wait to discover what the next year will bring.


Sunday, March 27, 2016

Our Part In Easter

Last night was the LDS General Women's Meeting, the first session of this spring's General Conference—the worldwide church broadcast where we hear from many of our church leaders. Yesterday's conference session was not quite like any other that I've ever heard before; in a major departure from the way things are normally done, it was announced that last night's meeting had a specific theme, which all the talks and video presentations reflection: Service. (There was a definite emphasis on service to and acceptance of refugees from Syria and other world crises, but also a focus on serving where we are and how we're able.)

This morning, I've been pondering the intersection of last night's powerful and inspiring messages with today's celebration of Christ's resurrection. Usually I find my thoughts drawn during the Easter season to the physical promise of Christ's sacrifice and ultimate triumph—the knowledge that, because he died and lived again, I will someday have the chance to experience life free of pain, sickness, the weakness and frustration that accompanies my every day. And that is still in my mind and heart, today as I lay covered in blankets and planning to miss today's church meetings because of a stomach bug.

But today I find myself, also, thinking of something I've never quite thought of before: Our part in the promises of Christ's suffering and death and subsequent resurrection.

Isaiah tells us that Christ bore our pain and our afflictions, and that because He did so, He knows exactly how to succor us when those moments come. This has always been one of the most precious promises of the Easter story to me—the idea that Christ, in His wisdom, knows exactly how I feel and how to minister to me. 

And this, I think, is where the messages of last night's conference meeting come in: Because quite often, the way that Christ ministers to us in our times of sorrow and anguish is through someone else. 

Spencer W. Kimball said, "God does notice us, and he watches over us. But it is usually through another person that he meets our needs." And so this is our part in the promises that Easter gives to us—being willing to watch, and recognize, and act on the promptings that we're given, to serve and reach out to those around us who are hurting. Being willing to be guided by Christ, who knows each of us and our needs intimately. Being willing to be His hands, the way that He exercises the hard-won empathy of the Atonement.

And this is what I hope to hold on to, to remember, to continually ponder today and every day as I move forward from this Easter Sunday into the springtime season of rebirth and new life. I want to work harder to look for opportunities to be the hands of Christ, to choose compassion instead of being so focused on my own life that I cannot see the places I can serve. 

I want to remember my own small part—all of our small parts—in making real the promises of Easter.

Wednesday, March 16, 2016

Cracking The Yogurt Code

Years ago, I went through a yogurt-making stint. Yogurt has never been my favorite food, but those of us with CF are on a constant hunt for more high-quality probiotics in our diet—so I figured I'd give it a try. I made it a few times, liking that I could use full-fat milk and select a starter yogurt that had the cultures I most wanted, but I eventually stopped because it was kind of tricky and no matter what I did my yogurt was so runny it was drinkable. Not long after, I started culturing kefir instead, and since it was ten times easier and its cultures made a more noticeable difference with my health, I never looked back.

A few months ago, though, Kate had to get four fillings done and the resulting day of soft-foods eating reminded me that Greek yogurt was pretty darn good, and got me itching to try making it again. My first batch was DREAM yogurt: thick and creamy before I'd even strained it, so rich it was downright decadent served with a little fruit and honey. I vowed that I'd keep making it, and often.

But every batch I made after that had me right back to where I'd been a few years ago: thin and runny yogurt that wouldn't set up even after straining for 24 hours in the fridge. Initially, I'd thought that the first batch of thick yogurt was due to the much wider array of naturally cultured yogurts that are available now which weren't available during my first yogurt go-round —but clearly that wasn't the case after all. This time, though, I KNEW it was possible to get thick yogurt, and I was bound and determined to figure out how.

I tried different brands of yogurt for my starter. Different culturing times. Different straining times. Different culturing environments. All without luck: my yogurt remained stubbornly thin.

Finally, I remembered one small thing that had been different about my first batch of yogurt—I'd used a thermometer to make certain that my milk had reached 200 degrees fahrenheit before taking it off the heat. In later batches, I'd decided this was unnecessary, since the things I'd read had said it needed to be at least that hot to cause the milk to separate correctly when cultured, but I figured I could easily do it by feel. After all, I regularly make simple farmer's cheese by look and feel, and that milk separates and solidifies just fine!

Still, I decided to give my yogurt-making one last-ditch effort and pull the thermometer back out. And... BOOM. Thick, silky yogurt. So thick it was almost the texture of Greek yogurt without any straining at all. I've since tried it again to back my theory up, and found that it basically doesn't matter how much starter I use (or which brand) or how long I let it culture for—the secret to that creamy thickness is 100% down to using a thermometer. It also takes longer to do than the by-touch method, since it has to be cooked lower and slower in order to get it to 200 without it jumping right to a boil. So, sorry guys, but you'll have to get a little technical to get perfect yogurt. But trust me... it's worth it!

The Recipe:

1/2 gallon milk

About 2 tablespoons of any high-quality brand of PLAIN, UNSWEETENED yogurt—it doesn't matter if it's Greek yogurt or regular yogurt, but it does matter that it's a good-quality name brand with live active cultures, and that it has no sweetening or flavoring. I usually use Zoi brand. You can use more starter culture if you want, but in my experience 2T is enough. It doesn't really change the results either way.

Heat milk in a heavy-bottomed saucepan, somewhere between medium and medium-low heat. You don't have to stir constantly, but do stir fairly regularly, especially as it heats up. (The amount you will need to stir to keep it from scorching probably depends on whether or not you use a nonstick pan.) Take the milk all the way up to 200*, which is the point at which it will be thinking really hard about boiling but not quite there yet. Remove from heat and let cool to about 110 (if it's a few degrees above that that's fine, too). In a small bowl, whisk together the starter without about a cup of the cooked milk until the starter is fully integrated, then mix this back into the pot. Cover pot and keep someplace where it will be able to maintain its temperature—it could be inside the oven with the oven light on, inside a camping cooler with a jar of hot water to help it stay warm, etc. I've also found that covering it with a towel is helpful at this point. You can also pour the milk/yogurt mixture into another container, but I like to leave it in the saucepan I cooked it in because I find that it helps it retain the heat. (Plus, it's easy and I'm going for an as-lazy-as-possible yogurt-making method.)

Let your yogurt stay in its warm place for however long you feel like, as long as it's at least 4 hours. I usually let mine go more like 10-12. My last batch I forgot and it went 24. It's not going to go bad, and I actually don't taste a huge difference in a longer ferment vs a shorter one. (Every yogurt batch I've made this way has been mild enough to eat without any sweetener if I so choose.)

If desired, strain finished yogurt by placing a strainer over a bowl and lining it with cheesecloth. Strain anywhere from 30 minutes to overnight, depending on how thick you want your yogurt.

Keep final product refrigerated. Enjoy! It's delicious topped with jam, honey, real maple syrup, fruit, or any combination of the above.

Wednesday, January 27, 2016

You can pick your friends, you can pick your nose, but your friends can't pick their own noses (and eat it)

Yesterday Kate and I were talking with my brother Josh, home from college for the semester, when the subject of boogers came up. I'd been asking Kate where her nose was, and what she did with it, in hopes of leading her into saying something funny. I was not disappointed.

"I get the boogers out of my nose!" She said enthusiastically. "And then I EAT them, because I'm the only one who likes to eat boogers!"

At first, Josh reacted with the same level of disgust everyone does when Kate makes this pronouncement, which is a fact she's very proud of. He protested that she should use a tissue, and she assured him that eating boogers was the way to go.

And then Josh changed tactics in a truly brilliant move.

"I think maybe I'll have to try picking my nose and eating the boogers next time," he said.

To both our surprise, Kate's reaction was immediate and strong.

"NO!" she said. "You cannot eat your boogers because that is YUCKY, Josh! I am the ONLY one who likes to eat boogers!"

Oh, dear little stubbornly individual girl, may you never change. (Except that I really do wish you'd stop eating your snot.)

Wednesday, January 20, 2016

Finding The Flip Side

Kate had four cavity fillings done this morning. When we talked to the pediatric dentist last week, he said that in the best case scenario we were looking at two appointments, possibly more. Toddlers, he said, don't sit still long enough to do more than one or two fillings in a row.

But this morning he finished up the two he was planning to do, and I said "keep going". Kate lay on the table, mouth held open with dental forceps, only the tension in her legs as I rubbed them betraying her nervousness and discomfort. Even on the last, and deepest, cavity, when the drill was clearly painful, she didn't cry: just twitched and whimpered, and then it was over.

(And then we went to Target and I bought almost everything she asked for, because special occasion right? Though I did draw the line at the two foot tall stuffed Olaf.)

This morning's bravery was par for the course with her last few procedures, including an EEG she had done at the end of the summer. Through all of these she has switched from her usual high-energy scream-don't-talk, nuclear-meltdown-tantrum mode of operation to a quiet, big-eyed determination to be strong and courageous. This other Kate persona is shockingly still, cooperative, clearly scared but with a stiff upper lip the Queen would kill for.

I think the laughing gas mostly made her sleepy,
since while I was checking out she laid right down on the floor with her bunny!

Nearly every day of Kate's life I've found myself repeating a mantra of sorts: "these traits will bless her as an adult." It's a reminder to me that all the things that make her an often difficult child to raise - the iron will, the way she sticks to her convictions regardless of what anyone says or does, her determination to always blaze her own trail and do things in her own way, all of these things that translate right now into hourly battles and sometimes constant screaming - will help her to grow into a strong, powerful woman filled with integrity and spunk.

And, completely unexpectedly (because this is, after all, the girl who pitched such a fit at a ten-minute pediatric visit this summer that the doctor couldn't even get near her, let alone examine her), the way that she's responded to that EEG and these dental procedures has given me a tiny glimpse of that future. It's good to see proof that this indomitable little will really can be turned to good, that her stubbornness can be a strength as well as a frustration.

This morning, watching my brave girl turn all that considerable resolve to handling her dental work with the poise of a much older person, I felt like I was getting a tiny glimpse of that future flip side: the time when Kate's singular personality will empower her, lift her, make her strong and beautiful.

So here's to you, Kate: may we all survive your childhood intact, to see you one day grow into the bright and brilliant woman I know you've got the potential to be.

Monday, January 18, 2016

The Importance Of Keeping Those Sniffles To Yourself (And How You Can, Even If You Have To Go Out)

Every year for the last several years, I've posted an "open letter to everyone I love" as soon as the first autumn colds started to circulate. For a number of reasons—including a really unpleasant dialogue with a reader that still unsettles me when I think about it to this day—I neglected sharing that post this fall, but it's still a subject that's been weighing heavily on my mind.

This fall/winter season is barely halfway over, and it's already been a really tough one for me. Three viruses in six weeks have left me really down for the count; I've averaged a course of antibiotics every month, sometimes two, including a two-week stint of home IVs over Thanksgiving. I've been up nearly every night for months with persistent, violent coughing. I've been unable to do something as simple as grocery shopping and have hardly gotten out of the house since October except for church (sometimes) and dinners at my parents' house, where I primarily lie on the couch. I've woken every morning in pain everywhere, my throat sore, my whole body heavy with exhaustion. As you can imagine, this has made every aspect of life, from parenting to bare-basics things like washing my hair, difficult. (And, as I write this post tonight, I'm very much afraid that I'm currently coming down with virus #4 in less than three months.)

And guess what? As far as the spectrum of cystic fibrosis and colds goes, I've had it pretty easy.

With permission, I want to tell you guys about my friend and "cyster", Ashley. Two years ago, Ashley and her husband welcomed a darling baby boy into their family through surrogacy, after a very long and heartbreaking infertility journey. Ashley's health was fairly stable, and although she had about half a normal person's lung function, she was excited beyond belief to be a mother and couldn't wait to watch her son grow up.

Unfortunately, around this time last year, Ashley got a virus that ultimately turned out to be a strain of influenza. For a normal person, the flu (not to be confused with the common cold or other similar viruses) is miserable and can sometimes last for a few weeks. For a CF patient, the flu can quite literally be deadly. Ashley's health spiraled downward fast, until she was spending more time in the hospital than out of it and had missed the majority of her son's life. This autumn, after a year of mounting difficulties, Ashley was placed on the lung transplant list. Not long after being listed her condition became critical, and she spent some time on the highest level of life support available before finally getting the call for new lungs that saved her life.

Unfortunately, Ashley's story isn't uncommon. Every single winter I personally know far too many CF patients who die, and very often the infection that leads them down that road 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. Stay home from church - truly. This year I'm 99% sure that all of the viruses that have felled me have been contracted from church, 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. Get takeout instead of eating at a restaurant.

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!