Seven Quick Takes with a Yarn Along!

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Hi! OK first things first: I was on the radio this week!

I loved being on Al’s show! He was great to talk to, especially in working memento mori in with All Souls’ Day! It can be easy to pigeonhole my book as a “Lent book” (IT IS NOT) so I was glad to have an interview that wasn’t all Lenty!

(Although, I mean, it is applicable in Lent….;-)

Funny story about this: Since Al’s show (Kresta in the Afternoon) is broadcast nationally, Diane and her kids were able to listen to the show live, since this was aired during the pick up from school time in Houston. Di said that the kids were silent on the way home, listening to the interview!

So we have found the key to silent, calm rides home: Put on Emily talking about her book. :-p

Magic!

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I haven’t done a yarn along here in awhile, so let’s catch up!

Right now I’m working on several Christmas gifts, including a blanket for Madeleine…(aka, my niece)

Here’s a look at the seed stitch pattern.

The yarn for this blanket is Rowan Cashsoft Merino in Turquoise, Rosy, Snowflake, and Lavender. It’s a modification of the Sully blanket—I’ve added a four stitch knit stitch border on both sides to keep it from curling in. I might also, the next time I make this, add the border all the way around.

There are also three scarves I’m working on for Christmas gifts, which I can’t show you here, haha.

For myself:

This is the garter graffiti shawl , using Spincycle’s Dream State in Starstruck and LolaBean Cool Beans Worsted in Teal Me In. I love how the Spincycle yarn works here!

I’m also working on my Ursina sweater:

Some of the set up rows.

This is knit in one of my favorite yarns—Quince and Co Lark—in the LE color way Blue Balloon.

And that is it for a yarn along! Whew!

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In the Dominican third order (Lay Dominicans), you take a name when you enter, just like the friars and sisters/nuns do. WheN I entered, I chose Bl. Lucy of Narnia as my patron. Her feast day is coming up, and if you’ve never heard of her, here is a piece from the Dominican student brothers’ blog about her!

And here’s a piece I wrote about her, many moons ago!

Lucy Pevensie, as seen in The Lion, the Witch, and the Wardrobe.

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Even though Orchard House (my apartment) is not a house, it’s still good sized (it’s over 1000 sq ft), and I love looking at decorating ideas. Really my style is very British/English country cottage, but when it comes to style, I love to look anywhere!

This piece in Apartment Therapy definitely made me wish I could organize my yarn like she does! Jennifer is actually a teacher in this season of Knit Stars (an online knitting mater class with a ton of teachers—there are six seasons now!), and I’m really looking forward to her class.

I mean look at the yarn!

I also really want a dress form like the one on the right, but alas, they are expensive so I’ll have to save my pennies. But they’d be great for displaying big shawls and sweaters! I also need to get a “head model” like the one you see on the shelf there. I am going to finish a hat soon, I am I swear. Just have to learn one more thing!

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Patty had a pretty great Halloween and has discovered the joys of Three Musketeers bars.

L-R: Fighter pilot, Alice being held by the Queen of Hearts, a fairy, and a fire fighter!

“MOAR CHOCOLATE, MAMA!”

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In other Patty news, she also KISSES THE PHONE NOW. It’s so cute. We also love to play peek-a-boo: she hides herself from the phone screen and then pops back in. She thinks it’s the most brilliant thing ever.

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I am just about done with my Christmas shopping and I am starting to write out my cards! I generally shop early for Christmas and I’m sure glad I did it this year because who knows when things will show up…I like to be an early bird when it comes to this sort of stuff.

Al Kresta appearance!

If you couldn’t listen live yesterday, here is the audio of my appearance on Al Kresta’s Kresta In the Afternoon radio show! I had a great time talking to Al about my book, memento mori, and the stations!

Seven Quick Takes: Advent, History, Radio Show, and the Only Movie You Need!

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Heigh ho, heigh ho! Welcome back to Seven Quick Takes.

We’ll start this week with….Patty. :) Per usual!

She has recently really gotten into baby dolls (these are all her sister Bridget’s) and I love watching her play little mama with them.

Also, Patty turns 16 months old tomorrow! Here’s a flashback photo from a year ago.

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Advent is coming! Advent is coming!

May I suggest that, if you are looking for an Advent devotional, that you take a look at Take Up & Read’s? It’s called The Holy Way and a lot of love and careful attention went into this book! We’d love to have you spend Advent with us. You can order your copy now.

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I’m going to be on Al Kresta’s radio show on Tuesday to talk about my book and All Souls’ Day! I will post the link when it’s up, but if you have Catholic radio in your area, check to see if Al’s show is aired where you are!

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Continuing down the list, history!

Well not really history, civics.

Basically these days I use my Political Science degree to teach people civics on the internet. :-p

Today’s lesson is: how a bill becomes a law in the US Congress.

It’s introduced in either the House or the Senate. The house it’s introduced in has to pass it. After they pass it, it goes to the other house. If it’s not passed, it’s dead. If it is passed, the president can sign it or veto it. If he vetoes it, then Congress can try to override the veto. If they don’t override it, bill’s dead. Can be introduced next session.

Veto override requires a two-thirds majority of members present.

To just pass something, you need a majority. That’s it.

There’s a lot of talk about how “well you really need 60 in the senate these days.”

That is, to put not too fine a point on it, crap. Yes, the U.S.. Senate has the filibuster. Yes, it requires 60 votes to stop a filibuster. But that’s not to pass legislation.

Capisce? Do we get it? Please don’t say you need 60 votes to pass a bill in the Senate, because you don’t.

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So, my dad and I, after many sojourns in ERs where we have to entertain ourselves, came up with the list of Essential Movies that Explain Life. What that means is, we draw on them heavily in regular life because they capture some truth or bon mot that applies to multiple situations.

They are:

1) The Wizard of Oz : “Some people without brains do an awful lot of talking!” "Well, being a Good Christian Woman I can’t say it!” “What a world, what a world!”

2) The 1995 Pride and Prejudice. The only version. If you know, you know. “You do not make allowances for differences of situation and temper.” “The more I see of the world, the more I am dissatisfied with it.” “You have delighted us long enough.” “What do we live for, but to make sport for our neighbors, and laugh at them in our turn?”

3) Mr. Mom. “I can’t believe it!” “I can’t believe it!” “You’re doing it wrong!” “No, lie to him. He likes it.” “Whatever it takes.” "

4) A Christmas Story: “It could be anything!” “Don’t you feel terrible? Don’t you feel remorse for what you have done?” “

Now, I’d add two other things to this—Christmas Vacation has gotten a lot of us during the pandemic, because “Whatever Russ, whatever.” And also Home Alone gives us this great gem:

via GIPHY

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Is there anywhere else int he world that does not trick or treat on Halloween? Or is this a uniquely central Ohio/Ohio thing? I as talking to Patty’s mom the other day and she said that she couldn’t believe we had trick or treat not on Halloween. I never really thought about it because that’s just how we do it here, but yes, it’s….weird.

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And I have begun writing out my Christmas cards. Yes, I begin Christmas prep early!

Walk the Holy Way with us this Advent

(All photos by Micaela Darr)

As crazy as it seems, Advent is almost here. It’s time to begin a new Church year! It’s time to wait in holy expectation for a baby to be born!

I always look forward to new Take Up And Read devotions, and The Holy Way is no exception. I’ve been so privileged to work with Elizabeth Foss and Micaela Darr on this one in the editing department to create The Holy Way for Advent 2021.

The readings are based on the daily Mass readings. Elizabeth has written beautiful, heartfelt essays for every day, as well as including journaling pages so you can write your own prayers and notes as you walk the Holy Way with us. One idea that repeats, over and over, in the daily Mass readings is the idea of a holy road—a highway for God; mountains that will be made low, and crooked ways that will be made straight.

We can do this in our own lives this Advent, by preparing our hearts, leveling the mountains of pride and discouragement, and making our lives a smooth pathway that will take us to the Babe in the manger.

Every one of these books is thoughtfully composed and curated just for our readers. Readers have asked for a book that mirrors the daily Mass readings, and here she is! The Holy Way is a meditative, prayerful, encouraging guide to this beautiful season of preparation and hope. It’s a daily respite to encourage you to put down roots in this holy season and let God speak to you.

You can get your copy here. I hope you will join us in walking the Holy Way.

Happy Feast of St. John Paul II!

Plaque commemorating St. Pope John Paul II’s visit to Estes Park’s Our Lady of the Mountains parish in Estes Park, CO. My sister got married here!

Today we’re not doing a normal quick takes. Since it’s the feast of St. John Paul II, I thought I’d write a little bit about him.

He was the pope for the majority of my life—when he died, I was twenty-three (and I would have my lung transplant a few months later). My dad, especially, has a lot of love for him, so I grew up with the pope’s books around the house, including Crossing the Threshold of Hope* (which I still love to re-read), and his encyclicals.

In fact, his apostolic letter Salvifici Doloris (On the meaning of human suffering) plays a big part in my book. My love of the pope led to the fact that I knew I could use some of his beautiful words to help make my points that suffering is not, always, an evil. Suffering can lead us closer to God (if you read that and go Oh, Emily, stop it, then go read the book. Seriously.)

He was such a father. When he died, I felt like my own father had died. Partially because his papacy was so long—much like Queen Elizabeth II’s reign—it was hard to imagine a world without him. Even when he couldn’t travel as much, or was physically debilitated by Parkinson’s disease, he was there.

BE NOT AFRAID! To me that is the great message of his papacy. We need to hear that so much today—do not be afraid.

If you’d like to read more about him, I highly recommend George Weigel’s two part biography: Witness to Hope* and The End and the Beginning* .

And of course, you can read the things that he wrote, with his ferocious intellect—he wrote so many things, plays, poetry, meditations, and his letters and encyclicals. There’s so much goodness to be found there.

The best way to honor his feast day, though, would probably be to pray the rosary. He loved it so much and wanted us to love it too!

And he’d also like us to remember that life with Christ is an adventure!

Go live like it is.

Seven Quick Takes: Women's Retreat, a New Book, and Yarn-A-Palooza!

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In the words of Dumbledore (adapted), “Welcome, welcome, to another week of Quick Takes!”

Post from earlier this week, which is proving really popular: Get In The Picture.

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Last weekend, I attended my parish’s women’s retreat, and it was so lovely! I loved the items we received from Pio Prints, a fabulous local company.

Each table had a lovely bouquet of flowers.

I just joined this parish in January, so I hadn’t been to this retreat before, and I hadn’t had a chance to meet many women in the parish. Fellow Ave Author Emily Jaminet was the speaker, and she gave us three fabulous talks that were just what I needed to hear.

Emily’s authored and co-authored several books, and her talks were derived from those books. The first talk was about the Sacred Heart, which was a devotion I’d heard of but hadn’t really thought much about. Emily runs the local Sacred Heart Enthronement group, and it was beautiful to hear her talk about this special devotion! (Her book, Secrets of the Sacred Heart*, is well worth reading to learn more about this devotion).

Her second talk was about Christian friendship (based on her book The Friendship Project*, which is great), and the third focused on making time for prayer throughout our busy days! (Based on her book Prayfully)

My notebook is full of a lot of “thank you, Jesus!” for bringing me on this retreat, because initially, I wasn’t sure if I wanted to go. I am really glad I listened to Jesus’ prompting and went. And I told Him so when we had adoration after Mass.

It was also really great to talk to Emily about writing and being a writer, especially since we are published by the same publisher. She was also gracious enough to plug my book several times during the retreat!

There are so many lovely women at my parish who are truly seeking holiness, and it was great to meet them and have good Catholic women’s fellowship!

(Also, want a signed copy of my book for a Christmas gift? Keep reading. ;-)

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Speaking of great Catholic women….my friend Kelly (who runs the Seven Quick Takes) has just published her first book!

I was deeply honored to endorse Better than OK*, which I think (and I wrote!) is vital for parents with kids who have chronic illnesses or other types of issues (I just say issues. I could say special needs, etc. but issues is the word that comes to mind for me!) It’s a beautiful, helpful book and I hope that it reaches the wide audience it deserves!

This sort of thing is something that the pro-life movement needs. We need parents to hear that it will be OK—BETTER than OK!—to raise these children, from parents in the same situations. We need to hear stories like mine that talk about how it’s possible to find job in a hard life. All these things come together to create a culture of life, with support that people need.

So go get this book! Get it! Now!

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In Patty updates: this week, she has become a little girl.

I mean she always was one, duh. But she’s gone from baby/toddler to a little girl.

She has seemingly discovered her sister Bridget’s baby dolls this week, and…what a little mama! I just can’t believe how grown up she is, all of a sudden. Like I said—little girl, not a baby.

And what a fun stage—to hear her talk and to get to play dolls with her, like her sisters are doing—but it’s also sad to leave behind baby Patty.

Fortunately Baby Maddie (my niece, my sister Melanie and BIL Jason’s little girl) is on her way!!

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Speaking of Maddie, I’ve started working on her blanket!

It’s a variation of the one I made Patty….

Which in and of itself is a variation on the Sully blanket pattern. (I don’t do the picked up border.)

or this one, I’m adding a small garter stitch boarder to keep the ends from curling up. You can’t really see it here (the bottom part, you can, imagine it doing that all the way around), but I don’t block blankets and with stockinette stitch (which this blanket is), I want there to be less curling. So basically every time I make this I modify it a little bit!

I’m using Rowan’s Baby Cashsoft Merino, which has cashmere in it, because, why not, and she is my first niece. :) (Well first niece or nephew, for that matter.) It’s so great to work with! I’m using the colors turquoise, rosy, snowflake, and lavender (in that order of striping) and I’m almost done with the first turquoise stripe. Because of the stockinette pattern you can’t see it really well, but I took a photo for you anyway (above)!

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OK before we continue Yarn-A-Palooza, CHRISTMAS BOOKS.

If you would like a signed copy of Living Memento Mori for Christmas, then please email me. They are $20, and that includes shipping, a bookmark, and a prayer card. I can make it out to anyone you want! They are great gifts!

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Back to yarn. :) I recently ordered these beauties, to make into a shawl:

And Christmas knitting has begun! I didn’t do too much of it last year, but this year, I’m making a few things for people. Do you make hand made gifts for anyone? I’m using some really soft yarn that will make up into great winter accessories!

Life Lesson: Get In The Picture

The other day, I was going through my photo stash on my computer. I’m sure I’m not the only one who suddenly realizes, I have thousands of photos on my phone, I should do something about that, and then goes on a deleting/organizing spree.

As I as going through them I found a lot of older photos of me, obviously. Photos that, at the time, I had hated. Take the photo above. I didn’t like the way I looked in that photo when it was actually taken. This has been a pretty constant thing for me, in all the years post-transplant. I rarely like how I look in photos.

This is because, pre-transplant, I was tiny. My body was actually eating itself to stay alive. I was actively dying in some photos. But damn I looked good in photos. Girls told me that they wanted to be me. I was a size 0 (00 didn’t exist then). I had a skirt from Gap that was an XXXS. That’s right. A triple small.

I weighed around 103 lbs in college. Before transplant, I weighed 85 pounds. I was the size of a middle schooler.

But I looked good in photographs.

Now, going back, I can see that I didn’t. I didn’t have good color, for one. I’ve always been fair, and I still am, but this was sick fair. Consumptive fair, Lucy-being-drained-of-blood-by-Dracula fair.

This is me in college—when I was healthier, when I weighed about 103 pounds or so.

It’s not a great picture, but you get the idea.

But our culture—and really, it is our culture—is so screwed up that we think that a girl who wears a 00 and is dying is something to be emulated, that this is a “good look”, that this is a good thing.

It is not a good thing. I’m sure some people thought I was anorexic and that I did this on purpose. I didn’t.

CF, for girls, can make you look really “pretty”. You’re thin, for one, so that helps. People think you look good. But it hides the fact that ours bodies are cannibalizing ourselves to stay alive. A CF person needs about 5-6,000 calories a day. I wasn’t getting that. Even on TPN (total parietal nutrition—essentially tube feedings, via an IV that was hooked up while I slept), I wasn’t gaining weight.

But I didn’t mind having my picture taken.

Post-transplant, I mind. I mind a lot. There were maybe a few months where I felt OK about having my photo taken, but generally, over the past 16 years, I try to hide in photos. I don’t like seeing myself in photos.

I’m much healthier now, obviously. I’m not on the brink of death, and that’s not an exaggeration. I have muscles, my body doesn’t try to eat itself to give itself fuel. But there are lots of other issues—not the least is trying to re-learn how to eat after 23 years of “eat whatever you want”—and with diabetes, the fact that you can have to eat things like candy, or drink juice, just to keep your blood glucose happy, is a lot of balls to juggle.

I try not to complain about it. But it’s hard to see myself in photos.

But anyway, as I looked at the photo of Di and Frankie and I (above), I thought. I am glad I got in that picture. I am glad that I have this memory of that moment, of Frankie being that age and Di and I enjoying being together. I am glad that I am in this photo.

Over the weekend, Diane texted me and said that Bridget had found a photo of us, taken when I was on vacation, on her mom’s phone, and that it was “her favorite.”

And I realized, Bridget doesn’t care that I don’t like how I look. What she cares about is that I was in a photo with her. That we have this memory.

This doesn’t mean that I don’t want to be stronger, that I don’t want to be in better shape. (I finished a workout right before I wrote this.) I do.

But so many times we don’t want to be in the picture until we “look better.”

But the important thing is that we make the memories. Because that’s what matters. That we have these things to look at later, and that people have these when we’re not there.

Get in the picture, folks.

Seven Quick Takes--St. Therese, Patty, and Speaking For Myself

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Happy Feast of St. Therese!

I just love that meme. :)

Here’s my post on why St. Therese is sort of my accidental patron.

And we used to (I hate saying “used to”) have a retreat center in town under her patronage, where I went on retreat at least once a year. We’re getting a new bishop and I hope he makes the effort to re-open it! But I took lots of pictures over the years:

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Patty was 15 months old yesterday!

Likes: her remote controls (that’s the one my dad gave her when they visited in July), waving bye bye with both hands VERY enthusiastically, blowing kisses, going outside, swings, running around the house while talking on the phone, going down the slide, baths.

Dislikes: Her car seat (sometimes), clothes (sometimes, as we see above), Sharing (sometimes), sharing her remote (always), when her mom wants to talk to me and will not give her the phone to talk to me…

I can’t believe how much she’s grown and how fast! She also says “donut” now, but doesn’t repeat words on command, which is funny. She just looks at you like, “what are you doing?”

She’s just a doll who definitely has a mind of her own. (Hmm…..sounds like her godmother!)

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In knitting, I have started my Ursina sweater!

One of the reasons I wanted to knit this particular sweater as because it’s very adjustable—adjustments are written into the pattern. I can adjust sleeve length, which is good because I have short arms, I can adjust the bicep, and I can adjust the bust size by adding bust darts (which are what keep you from tugging down the sweater as it rides up). It’s knit top-down, and if you remember my cardigan, that was knit in pieces and seamed. So fortunately I have a knitting buddy who will be knitting her own sweater with me so we can help each other out!

I’m also being very deliberate on this sweater—moving slowly, and also carefully. Part of this is because I don’t want to frog it (knitting talk for ripping it out—get it? ripping?), and also because it’s nice to not have to speed through something. Normally I’m a pretty fast knitter.

What you see in the photo above are the first 10 rows. Eventually the directions will tell me to knit in the round, which makes me nervous, because I have a bad habit of twisting my stitches!

If you’re on ravelry, you can see my project notes and updates here.

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So, “talking for myself.”

One of the big reasons I wanted to write my book—and what made it different—is that I am speaking for myself. It’s not my parents talking about me. This is really, really common in disability/illness literature. Either the child has died, and the parents are writing about that, or the child is still alive, but they’re writing about their experiences of raising said child so far.

My book is me talking about what it’s like for ME.

It drives me crazy when I see articles about disability written by the parents. Especially when the parents are talking about how the child must feel to hear X or Y.

Magazines! If you want to know, ask us! I can tell you all about how it feels to be told I’m disposable. TV shows! Any media outlet! You can ask us and we’ll tell you!

But instead they don’t.

Please, media outlets, ask us. We can speak for ourselves. CFers aren’t dying when they’re five. There are lots of CF adults. Ask us how we feel!

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In this realm….you know that I am always talking about disability access. I do it because it’s something that needs addressed and I feel like if I keep pointing it out, I can make changes and/or bring the problems to people’s attention!

Today’s accessibility rant: captioned videos.

Folks. If you are going to make videos, please caption them. If you cannot caption them because your software won’t let you or something, please create a downloaded document so that people like me can print it out and follow along.

This is especially necessary if the videos are a big part of your class. If people have to watch a video and then talk about the video, or watch and then fill in a worksheet, not having captions is completely not acceptable.

(Yes, I’m running into this right now with a church bible study.)

It really, really is not OK for this to keep going. Please caption things. Don’t say you don’t have the ability to do it, because there are solutions.

It makes me sad that I have to say this, especially about church-related things.

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It’s flashback time!

I saw on my SM yesterday that Kilauea was erupting I immediately thought of this

If you are too young to have seen this, WATCH IT. It’s awesome!

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We’re taking a trip to Amish Country this fall and I CANNOT WAIT! I’ve always wanted to visit so this trip makes me really happy. I’ll share more about this later, but right now I can just say—chocolate.

Seven Quick Takes--Sinuses & Stats

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Hey everyone! Welcome to fall. (AKA, the return of hockey season!)

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On the blog this past week, I wrote a piece that I think is pretty important, and if you haven’t read it, here it is: Lies, Damn Lies, and Statistics.

If you’ve been a reader here for any length of time, you know that I take the idea that “everyone has worth” seriously. This is because I have been frequently told that because my genetic code is messed up, my life is “too hard”.

Life is hard for everyone. Everyone will suffer. Everyone will die. I wrote a book about this, for Pete’s sake.

Yet some people think we can control suffering. We can control unhappiness.

We can’t.

So whenever the ugly head of eugenics rears its face, I try to play whack-a-mole with it and beat it down into the dust where it belongs. This piece is my latest Whack-A-Mole entry, but with the caveat of a really, really grim statistics at the beginning.

95% of children with CF are aborted in utero.

Anyway, read the piece to get all the sad facts and see exactly how I feel about this. :)

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Happy news, yes? :) How about some Patty?

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Also in HUGE news, I’m an auntie to a little girl! I have a niece coming! Her name is Madeleine Grace and she will arrive in the world in January and I am so excitedddd. (She is my sister and her husband’s little girl)

This is the first grandchild for my parents, so obviously we are all really excited.

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I’m having sinus surgery in December! My ENT had a CT of my sinuses taken and apparently there is lots of “mucus and junk” hanging out in my ethmoid sinuses (which are really cool, btw), so he’s going to go in, get the crap out, and then flush in lots of antibiotic stuff to keep things happy!

This is all part of CF. The mucus that’s really think and causes so many issues in my lungs also causes issues in other places, mostly the sinuses, the pancreas, and the reproductive tract (most men with CF are sterile—not sure if it’s all, but most are.) For me, my transplant took care of about 98% of my CF issues—but not my sinuses. Fortunately I have really good sinuses (I had a friend who needed sinus surgery every nine months) but it’s been about 10 years since I had a clean out and that means I’m overdue. So, December! Surgery! Yay!

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Dad and I are reading the Cormorant Strike series and we love them. I just started watching the TV series. Have you read these? I’m not super into mysteries/crime, but I love these. And I mean it helps that they’re ghost written—it’s actually JK Rowling who write them. :) So as a massive Harry fan, that helps. (I didn’t like her first adult novel, btw. So that’s why I was slow to pick these up. But these are good.)

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Knitting? I finished the Beatrice Shawl, and I’ve got four colors for a mystery KAL.

Beatrice shawl on the mats

The KAL is a 6 week thing, and I have five of the clues so far, so I joined late, but I’m really chomping at the bit to get started. I just needed some more size 4 needles, so once those arrive I can dive in!

Lies, Damn Lies, and Statistics

Diane and I as pre-schoolers, before my CF diagnosis. (I’m the blonde.)

I’ve never really liked statistics.

First off, they used to not work in my favor. 4% of the CF world gets something? That means I’m getting it. Get a bug that only one other person in the world has had? SURE WHY NOT (says Emily’s body).

Also, I’m pretty sure that my stats professor pity passed me, because I was a senior and needed a math credit to graduate (although I can figure out the number of possible combinations of license plates and combo meals, so….not totally wasted?).

Post-transplant, I tend to make statistics in a good direction—being 16 years post-transplant, for one. That’s a good way to end up a statistic.

However. The following, from an article I read last week, is not a good statistic.

Ninety-five percent of unborn children found to have CF are murdered.

(I will put the link to the article at the bottom of this post, if you want to read it for yourself and check out those links.)

I was first told that I shouldn’t exist when I was 15—a story I tell in my book. But since then, we’ve made amazing strides in CF research. There’s Trikafta and Kalydeco, for starters, which are huge breakthroughs in gene therapy that don’t just help CF—this technology helps people with dementia, as well as other genetic diseases. People with CF are living into their 40s and 50s, instead of their 30s. This is all huge.

But people don’t see that. They see problems. They see suffering. They see imperfection. They see a life that isn’t worth it. A life like mine is not worth it.

This is what I wrote on instagram about this:

I used to be pretty private about having CF. Not because I was ashamed of it, but because I didn’t want people making judgements about my capabilities based on that. I didn’t want their pity and I didn’t want their fear. 

But after my transplant, I became much more vocal, because I had to be. Because people “like me”—people with messed up chromosomes—are seen, more and more, as “defective.” As “unwanted”. As “wrongfully born.” 

This hit home yesterday, the 28th anniversary of my CF diagnosis. I read the statistic you see up there—that 95% of children diagnosed with CF in utero are aborted. 

Ninety-five percent of people like me are killed on a regular basis. 

I am a survivor, in more ways than one. 

I used to think that I was supposed to be a contemplative nun. In fact, this [9/15] is the anniversary of being told that I wasn’t going to be going on to the next discernment phase with a monastery. 

Now I know differently. Now I know that I am supposed to be in the world, telling my story, so that people can see that an imperfect, messed up, “defective” body can still give you a life that is joyful and worth living. 

I can become a saint with a messed up chromosome 7. 

I am here to show that life is worthwhile, but also, to deeply pray for those who do not see this. People who think that I am disposable—that children like me are disposable. 

I want to soften their hearts. 

I do want to soften their hearts. But I also want to bring this to light.

There are at least 2,000 CF mutations on chromosome 7. They can’t all be checked for in an amniocentesis. So there are children with CF who are bon, and then we have wrongful birth suits.

The argument behind these suits is that these children shouldn’t have been born, because, they will suffer. They will die.

NEWS FLASH: all of us will suffer. All of us will die. I understand wanting to protect your child. I understand feeling that this is your fault. (Although I’ve never thought it was my parents’ fault. It is what it is. The same genes that gave me my voice, my beautiful eyes, my mind, and sense of humor also gave me CF. It’s the shakes. It’s how it works.)

I cannot imagine how this child will feel, when he is old enough to search the internet, and see that his mother writes about how she doesn’t think that his life is worth living because he suffers.

What it comes down to, really, is this. That we think that suffering is somethign we shouldn’t have to do.

I was talking to someone on twitter about this, and his argument was that we should be able to “select” embryos that don’t have CF or CP or Down Syndrome or whatever, so that we can increase health and happiness. It was sort of like talking to Dr. Jekyll before he consumed his formula.

Health and happiness do not always go together. I’m definitely happier than some healthy people I know. In fact, the strange situation is that having CF has made me more sensitive to happiness, to good moments, to things that deserve to be celebrated. I didn’t get upset over not being class valedictorian (as I remember one girl in my class being). I didn’t get upset about a B-. I had perspective—and still have a perspective—that a lot of people lack, what my dad calls the “macro” view of life. That doesn’t mean that I still don’t get upset about micro (ie, small) things. I do. But it’s not something that’s going to destroy my life or make me question the existence of God, because I’ve learned too many things along the way and seen too much of God’s providence to dismiss that.

But all some people see is the bad side. The treatments. The hospitalizations, the IV courses, the PICC lines. I know that world. I’ve experienced it brutally, and I continue to experience it.

But to wish I didn’t have CF would be to wish I wasn’t me. It would be to wish myself away.

So many people see only what is wrong. They don’t see what is right. Statistics will never tell you that.

Article: “The Moral Panic About Eugenics Poses a Threat to Abortion Rights”.

What I'm learning through the Bible In A Year Podcast

OK so it’s confession time.

I am really, really bad about reading the Bible.

Given that I love to read, this is even worse, I think. I love to read—and I neglect the Bible?

(That’s not precisely true. I love the New Testament. I love certain parts of the old, especially Isaiah, Esther, the Psalms, and the Song of Songs, and Lamentations during Lent. And when I say the Office, I am getting quite a bit of Scripture in!)

Every time I’ve tried to read the Bible “straight through”, I’d get bogged down in Leviticus and that would be it. Ugh.

So this year, my spiritual director said, “You need to do the Bible in A Year Podcast.”

And, being obedient, I did. I started in May.

The first thing about this is—it does cover the entire Bible in a year. But each day doesn’t take terribly long. Each podcast is about a half hour or so (sometimes less than that!). You can listen in your car! The podcast will also remain up permanently, so even if you start today, you’ll still have access to the podcast next year!

Second, Fr. Mike explains things. (I’ll get to my two big revelations in a second). This is so helpful. Everything is explained through a Catholic lens, which can be hard to find! There are a lot of “study bibles”, but they can be….yeah. Dense. Let’s just put it that way. He also has special episodes with Jeff Cavins, a bible scholar, before every new reading “period”. (There are 15 periods that make up the plan.)

The podcast uses the Great Adventure Catholic Bible (published by Ascension), but if you want to use your own bible, that’s cool too. I use the Great Adventure Bible tabs to mark up my bibles and I love them.

I’m on Day 126 now, so I’m more than 1/3 of the way through the Bible, which is amazing to me. So far I’ve read: Genesis, Exodus, Leviticus, Numbers, Deuteronomy, Joshua, Judges, Ruth, 1 Samuel, and the book of Job, as well as parts of Psalms and the book of Proverbs (those last two are sprinkled throughout the entire year) . Right now I’m in 2 Samuel and 1 Chronicles (the “Royal kingdom” period in the plan.)

Here are the two biggest takeaways I’ve had so far:

1) God cares about worship—and particularly about the Sabbath

Leviticus is actually all about the worship of God (as is a lot of Numbers). It’s not just names and rules. It’s God telling his people how he wants to be worshipped. He’s taking these people who don’t know him and forming them into his people. And that means they need to know what God loves and what he hates, and how to worship him, because they couldn’t in Egypt!

A lot of how we worship today is reflected in this readings! The Eucharist is even prefigured, when talking about the bread of the presence! Moses anoints Aaron, the same way priests are anointed today during the Sacrament of Holy Orders. Altars are also anointed when new churches are constructed—same as in the book of Leviticus. The sanctuary lamp that you see in every Catholic Church? Leviticus 24:2!

He also cares about how the Church is constructed. God actually cares about these little things! (Which was sort of amazing to me, that he cared about the types of wood!)

God also really cares about the Sabbath. Hoooo boy does he care about it. He says it over and over again “you shall keep my sabbaths” (Lev. 25:3, Lev. 26:2, for example). He promises blessings to those who keep the sabbath. (Lev 26:6). He doesn’t just mention it once on Mt. Sinai. He says it over and over and over again. Keep the sabbath. It’s important to him!

You shall keep my sabbaths and reverence my sanctuary: I am the LORD.

—Leviticus 26:2

Now, the Christian sabbath is different from the Jewish sabbath—but it’s still important.

How are we keeping the sabbath day holy? Are we resting from work—including things like laundry and dishes? (I mean sometimes it needs done—but if it can wait until Monday, is it?) Are we enjoying leisure and relaxation? Are we spending time with God in church, and in additional prayer?

God is serious about this and I didn’t realize how much so until I read these chapters.

(If you want to read more about this, I suggest: Leisure: The Basis of Culture and Souls at Rest)

2) God is serious about tithing

Tithing is another thing God is serious about. He mentions it in Leviticus with offerings, especially the offerings of first fruits (Lev. 23: 9-13), and the priest’s portion was the people’s tithed offerings (Numbers 18).

Tithing is something that we do talk about, but do we talk about it enough? It’s one of the precepts of the church that we are to “provide for the needs of the church.”

But it’s also clearly biblical, and it’s also in the New Testament, where Jesus tells us to give our extra cloak to a person who doesn’t have one. The Epistle of James tells us that, and we heard it this past week at Mass:

If a brother or sister is poorly clothed and lacks in daily food, and one of you says to them, “Go in peace, be warmed and filled,” without giving them the things needed for the body, what does it profit? So faith by itself, if it has no works, is dead.

—James 2:15-17

Generally we talk about giving 10% of our income. I’ve seen some Catholics talk about giving 5% to the parish, and 5% to other good charities, like pro-life organizations. (I think St. Pope John Paul II once mentioned dividing it up that way, but I’m not entirely sure.)

As you all know, I do not have a lot of money. But after reading so much about tithing, I figured out what 10% of my income would be, and I subtracted the number I already tithe. The final number is the amount I need to up my tithing to hit 10%. I am slowly working towards that goal. It’ll take time, but that’s OK.

Some people aren’t in a position to give much, and Jesus talks about that when he talks about the widow’s mite:

He looked up and saw rich people putting their gifts into the treasury; he also saw a poor widow put in two small copper coins. He said, “Truly I tell you, this poor widow has put in more than all of them; for all of them have contributed out of their abundance, but she out of her poverty has put in all she had to live on.”

—Luke 21: 1-4

We really do need to take this seriously. We have to give to the poor and the those who need our help. You might want to support pro-life charities, or adopt a child from an organization like World Vision. You might want to give to a charity that helps provide clean water around the world. Whatever it is that touches your heart, even if we only have a little—giving a little is still giving.

These are the two things that have really impressed themselves strongly upon my heart. As I continue through the next 2/3 of the Bible, I hope I’ll find other things that I want to share with you!

I get knocked down, but I get up again!

“At the Millinery Shop”, Degas

If you weren’t a 90s kid/teen, you might not know this song:

(Yes, I just dated myself. And no, I’ve never seen the video, so I hope it’s not questionable. :-P)

(Also for some reason “Danny Boy” is involved. Never was sure why.)

Anyway, that’s a lot of what my life is like, and my dad said this to me yesterday.

“It’s like you start to exercise and have plans and then….you get sick! And you can’t do those things!”

“Welcome to my life,” I said.

And it’s true. It’s sort of frustrating, but it happens a lot. It happens in the hospital when I was 19 and had to learn how to…..sit up again. Or go to the bathroom unassisted. The body is durable, but it’s also surprisingly forgetful. “Huh? We used to ….sit up? All day? Nah.”

So that’s what’s going on right now. The Cipro caused my Achilles’ tendons, especially on my right foot, to get unhappy. Not so unhappy that something actually snapped or swelled, but enough that I went, “OK, we can’t use that foot.” I spent Sunday not putting weight on it, and most of yesterday was the same. It’s feeling OK today. I’m waiting on word from clinic to see if I should stop the Cipro early or if they want me to finish it and damn the torpedoes.

But….that means that my house was sort of a wreck. To put it kindly. Because I was sick most of the month of August, and then I got on the Cipro, which limited my movement, and even with limited movement, I still ended up with issues.

Fortunately my parents are a big help here and will help me dig out from under the avalanche of…stuff. But the other thing means that since I can’t stand for too long, I can’t really cook, which is detrimental both to health and to me, because I like to cook. I have lots of recipes I want to try out. But it’s hard because I can’t stand over something and stir or chop or slice. There is one recipe I have that I love and is really non labor intensive, so I’m making that tonight for dinner, but….I like to cook!

I am very thankful for my parents’ help (and my brother’s, when needed.). It can be hard to feel like a bump on a log and I hate having people clean up after me because I feel like the world’s biggest slacker. But…allowing people to help you in a part of growing in humility. So I’m growing, I guess.

The hope is that I’ve kicked this infection and I can resume regularly scheduled programming soon. I see my ENT next week and I’m going to see if we can do some antibiotic rinse in my sinuses to keep them happier long term, because I’ve been getting a lot of sinus things lately and I don’t really want that to continue (especially if my body can’t tolerate the antibiotics anymore….fingers crossed we can still do them.). So we will investigate some long-term solutions, if there are any.

All this to say that, yes, in life we have setbacks, sometimes huge setbacks, an it can seem like we’re not going to recover from them. But most of the time, we get knocked down and we get up again. :)

Seven Quick Takes Labor Day Edition

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Hi! Happy Long Weekend, US readers! :)

If you’re a subscriber, this post just landed in your inbox. If you’re not (and why not may I ask?), then: Ave Maria Press is having a Labor Day Sale! 10% off everything with the code LABORDAY21 at checkout!

So be sure to get your copy of Living Memento Mori (for yourself or friends!).

In the post I also talk about Ave’s new note taking bible. It’s great! And it’s also included in the sale! So you can check out my notes on that.

The sale runs through 9/6 (Monday). Hop to it!

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OK so in the last quick takes I said I was feeling better. Hahah I LIED. By the 26th I felt so crappy that I didn’t have the energy to make coffee. So I called clinic (called=emailed) and got a script for Cipro which is making me feel better.

However, Cipro is a strong (as in, it’s used for plague and anthrax) antibiotic and can mess with tendons. I don’t really like that, but I like that cipro works. I’m on antibiotics all the time as a matter of course so there’s not a whole lot to pick from when I do get sick that’s in pill form. It’s basically Cipro. So I’m used to it, but I don’t really like it. I mean I like feeling better but it’s still a nasty bit of work.

I have less than a week to go on it so that makes me happy, because then I can stop freaking out about my tendons!

And yes, I am getting back to normal energy, which is great.

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Since I want to not mess up my tendons, I’ve been doing a lot of sitting, which means reading and knitting mostly. Fortunately my Aunt Mary (who is also a bookworm of the first degree) sent me a box of books so I can have something to do while I sit! She sent me We Are the Brennans, Klara and the Sun, and A Swim In A Pond In The Rain.

So far I’ve read Brennans and really liked it. I’m reading Klara now, and I’m looking forward to Swim because I like Russian literature. (Mostly. I still need to read War & Peace which is in my library, mocking me for not reading it yet.)

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In Knitting, I have a lot going on but there was a Great Knitting Mystery Adventure this week.

I got a lot of yarn….

And then wound the pretty champagne colored yarn (Quince and Co Crane) for a project.

I was confused on said project. I posted it on Facebook to numerous excellent knitters. WE WERE ALL SO CONFUSED.

Finally, we figured out what to do. It was insane, my friends. Many minds were flabbergasted about this pattern.

But WE DID IT.

BEHOLD.

Anyway now it’s chugging along and is going to be a gorgeous shawl but man, figuring out this pattern was ROUGH!

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The rest of the yarn will be used for two shawls (I LOVE SHAWLS, OK? I really do. They’re so fun.) and a cowl. And yes, I am going to start my sweater soon!

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What are your weekend plans? Mine involve two dinners, lecturing at Mass, and…that’s it. :) But one of the dinners is for Tiffany’s 40th birthday!

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You know Tiff as the mom of Billy, most likely. Well, she’s pregnant again (with a little girl this time) and today is her 40th birthday!

Here she is with Billy…

And this is one of my favorite pictures of us. :)

Labor Day Sale at Ave Maria Press!

Happy Friday everyone!

There will be quick takes later but I wanted to post this first—Ave Maria Press is having a Labor Day Sale! You can get Living Memento Mori for 10% off through Monday! (As well as everything else they sell.)

Enter LABORDAY21 at checkout and there you go!

Another great resource is Ave Maria Press’s Notetaking Bible. I’m using it for my Bible In A Year studies. I’m ridiculously picky about Bibles and especially paper—I use fountain pens, sharpies, all sorts of markers, and I want them to work and not make a mess. That doesn’t happen with this bible—seriously. I can use fountain pens to make notes and there aren’t issues with feathering. (Sometimes, depending on the ink, it can bleed through a bit, but it’s not a big problem and it hasn’t happened often to me.)

It’s also a one-column Bible, which I like because it’s a lot easier to read!

There’s the hardcover or the imitation leather (which is the one I have). Take your pick!

So go shop! :) Enjoy!

Seven Quick Takes: Truth, Cold Bug, and Babies!

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Hello! Happy Friday!

Last week I didn’t write because I had a nasty cold/virus bug thing. It wasn’t the plague. :) But I had some dental work two weeks ago to replace an old filing, and some grossness must have come out during the work and flown right up to my left sinus cavity. For teh first few days it was just sort of sore throat, but then it became a nasty cold that had me pretty well sidelined. Sigh. At least I can take cold meds now—I couldn’t pre-transplant!

Anyway, mostly over now, which is good. Yay!

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This next bit is something that’s been gnawing at me for awhile, but it came to full flower yesterday. That’s the movement of people to not tell the truth. Not necessarily intending to lie, per se, but to not be accurate with their words.

During COVID, I’ve noticed this a few different times, and especially now with vaccinations. There seems to be a persistent myth—and it is a myth—that people who are immunocompromised can’t receive the vaccinations.

We can. I have.

So I’ve taken to calling people out on this—nicely!—when I see it. yesterday on twitter, I did this. The response I got was (and I’m paraphrasing): “well, we only have 140 characters, so we don’t have space to make distinctions.” I was told (and this is a quote) that I was “mincing words.”

No. I was being accurate.

The words we use do matter. That’s not just because I’m a writer and words are what I use to earn my living, but I think we all know that words can be dangerous or healing. Truth or lies matter, and facts matter.

It matters that people believe what’s true, which is that immunocompromised people can get the vaccine. Some people cannot get it, just like all people cannot get every vaccine. (I can’t get the shingles vaccine, because it’s a live vaccine.)

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Being told that it’s mincing words to want to be accurate—to be truthful—was very strange to me. (besides the fact that to “mince words” means to not be truthful or to beat around the bush. When people say “let’s not mince words”, they mean, “let’s be totally honest.” )

When I studied journalism and wrote for my college paper, the goal in writing as to get across the facts in as few words as possible, because all journalists (well, and all writers) know about words counts and space. To say that a word or character limit doesn’t allow you to be honest is…..weird.

I think it also bothers me as a Dominican. The motto (well one of the mottoes) of the order is veritas— “truth.” The order was founded to spread God’s truth throughout the world, not the “truth” that the Albigensians believed. Truth is important, in every sense. Jesus called himself the way, the truth, and the life. Truth isn’t “mincing words”.

So that’s been something I’ve been thinking about lately.

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Another thing I’ve been thinking about? BABIESSSS.

Here’s some Patty:

“Mom, I LOVE PAPER TOWELS!”

She’s 13 1/2 months old, is working on more teeth, and is walking like a champ. She can also walk while holding her mom’s phone and have a “conversation” (in baby talk) with you. And she kisses the screen, which I think is adorable. Her big siblings have gone off to school, leaving her and Johnny (seen above) at home with mom—at least until Johnny starts pre-school in a few weeks. (He won’t go every day).

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And in other BABY NEWS—My sister is pregnant! I’m an auntie! Yay!!!!! This is my first niece or nephew and I am insanely excited. Of course baby blanket knitting will begin as soon as my sister lets me know what colors she wants. I’ll be making the same one I made for Patty, just different colors.

Patty snuggled under her blanket. <3

Since Mel and her husband live in Colorado, I won’t have to worry so much about using wool, like I did with Patty, who lives in Texas! I kept worrying that she’d overheat under it, but she seems to do A-OK with it and takes her blanket everywhere, which makes me very happy. I hope that my niece or nephew love her/his baby blanket just as much!

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I’ve been re-reading/re-watching the Harry Potter series. (And the baby’s bedroom is Harry Potter themed!) And while I do that, I’ve done some HP knitting….

For Christmas last year, Mel got me Knitting Magic, a book of Harry Potter projects. These are the horcrux washcloths, so there is a set of seven. I started with Harry, and then made Hufflepuff’s Cup.

Hufflepuff’s cup—it’s not as easy to see as Harry, but it’s there!

Next up will be Ravencaw’s diadem. My Ravelry notes are here.

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The local school district has started back here, and Patty’s siblings all went back on Tuesday:

Has school started back where you are?

Long Time No Yarn Along! :)

I know it’s been FOREVER since I’ve done a yarn along for you, so here we go, I owe you one!

So the first thing is finished objects, or FOs in yarn speak.

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This is a finished Free Your Fade shawl from Andrea Mowry. I just adore her designs! (I have to weave in the ends and block but it’s off the needles, so finished for our purposes!) I used Wonderland Yarns fingering weight yarn in Egypt (light blue), Seography (bright blue), and Jerusalem (all the colors!). Egypt and Jerusalem are limited edition yarns for their 2020 Around the World collection, and as of right now, Jerusalem is still available!

This is an amazingly fun shawl to knit—very relaxing, very portable (I took on the wedding trip!), and a lot of fun when it comes to color combinations. I am definitely knitting another ASAP. (You could also make it bigger!)

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In progress: a sweater!

From Jacqueline’s website

Jacqueline was one of the starts of Knit Stars 6, and she talked about how to adapt patterns to fit your body, which I loved. The pattern we got in her class was this sweater, called Ursina.

I’m going to be adapting that as my new project. I want the length to be more full length, not cropped. (I don’t like cropped). I love the v-neck that isn’t too deep, and the shaping at the bottom which points to the face—all good things! This is a top down sweater which I’ve never done, but I have a knitting friend who is doing it with me so we can help each other!

For my yarn, I chose Quicne and Co Lark (the same I used for my cardigan project), but this time in the Limited Edition Blue Balloon color way (which, as of this writing, you can still get!)

SO MUCH Blue Balloon to wind!

Blue Balloon was also offered last year and I grabbed some to knit a Hawthorne Shawl (which is currently hibernating, bad me!) But I just love this yarn and the color is perfect for me!

I knitted a swatch but I was off a tiny bit on the gauge, which, not to brag, is rare for me, so I’m trying again, going down a needle size (to a 6, instead of the recommended 7). I’ll see if that helps.

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In progress: Confetti Shawl

I belong to a knitting/yarn club where every quarter you get a special skein of yarn, a unique pattern for that yarn, and fun surprises. This was the yarn for summer—it’s a cashmere blend! I didn’t want to make the pattern that was included, so I decided to use another pattern they recommended, a shawl called “Confetti”. I haven’t cast on yet, because I wanted to finish the Free Your Fade at the top of the page first before I started another shawl, but the time has come to cast on with this guy!

I might not do the picot bind off—we’ll see. I was supposed to do it on Free Your Fade but I was so confused when I looked it up that I said, FORGET IT. I don’t like to be too frustrated with my knitting, so I just did a basic bind off.

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In progress: Rosarium shawl

Quince and Co—in case you haven’t realized—is one of my favorite yarn companies. In fact, it’s my go-to for good, quality wool in solid colors. I’ve never used their Finch fingering weight yarn, though.

Well, that’s about to change. I just had to get some of their birthday limited edition in Parakeet!

image from Quince and Co’s Facebook page

(Yes, I like blue, OK?! :) )

Quince describes this as a tonal variegated yarn, so I’m really excited to knit with it. At first I was thinking of a shawl that was two colors, but then I thought, wait, what about Rosarium?

A rose garden—but that’s also where we get the word “rosary.” So….a Marian blue shawl? AMEN! I can do that! I had been waiting for a good yarn for this and voila! I think this will be amazing. And since it’s fingering weight, it will be a lightweight shawl that’s an easy size to throw over a dress or short sleeved top for Mass or anything else, really. Catholic knitting! And also it’s a solid color, which none of my shawls are, so it’ll be a nice addition to my shawl wardrobe.

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Texas yarns!

I have a cowl planned for the Texas Tulip yarn, and the matcha is still sort of up for grabs. Like Rosarium, it’s waiting for the right pattern. I might do it up in the Confetti pattern if I like it—we’ll see!

Teas Tulip on the top, matcha on the bottom.

-Books!-

As for books….

I re-read Tokyo Ever After (love it), and read Artemis, the only one of Andy Weir’s books I haven’t read. I’m re-reading the Harry Potter series, and I’m currently on Chamber of Secrets. I’m also reading No Man Knows My History, Dominican Spirituality, and Emma.

Accommodations are not a "perk"

An example of a lung function test result graph

As the talk about masking mandates ramps up again, I want to say something to all schools (high school and up)—where students and faculty can get vaccinated.

If you are requiring masks for all students and faculty, then please provide accommodation for students and staff who are hard of hearing/deaf and/or cannot wear masks.

When I was in high school and college, my lung function took a huge hit. As a sophomore in high school, I contracted non-infectious TB, which really destroyed my lung function. In college (also my sophomore year!), I almost died. I spent two weeks in the ICU battling a bug that only one other person in the world had ever had.

For the rest of my college career, I had between 19-25% lung function. In my senior year, I began transplant workup. I was sick.

I also started to lose my hearing my junior and senior years in college.

If I had been forced to wear a mask, I would not have been able to attend school. I’m not kidding. This isn’t a “psychological reaction” to wearing masks. It’s a fact, based on my heart rate, my rate of exertion, and my breathlessness when I wear masks and attempt to do anything now, when I have 54% lung function!

I could not have carried all my books around my high school building, let alone my small college campus. I would have not been able to breathe. I would not have been able to go up the stairs in my dormitory. I would have had to drop out of school, because there’s just no way I would’ve been able to do anything like get to class or understand what the professor was saying. This is not hysteria or hyperbole. By the end of my senior year I couldn’t get up a flight of stairs without being severely out of breath.

My hearing loss was fairly mild in college. In fact I didn’t get my first set of hearing aids until after transplant. But who knows if it would’ve been more of a problem if I couldn’t have see my professors’ lips?

Please. If you are in a position of authority to set mask mandates in a school or business, please provide accommodation for those of us who need it. We aren’t making it up, we’re not trying to be dramatic, we need to be able to breathe and understand what’s happening in class.

Seven Quick Takes: Links! Health! Patty!

I know that’s not a sexy title, but….

I’ve been writing about COVID related stuff a bit in the past year. And as we start to talk about masks and lockdowns again, I thought it would make sense to have an index post about COVID-related things.

The reason I feel this way is because I have, not to brag, a lot of hospital experience. I’ve been a patient in a hospital for many years. I know hospitals. I know lung stuff. I know about risk assessment and personal health.

So I feel like I should share my insights with you, for whatever you think they’re worth.

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COVID, antibodies, and transplant life: posted 5/24/21

This one is a bit of an outlier because it deals with transplant a little more specifically, but it also talks about acceptable risk a bit as well.

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Prudence, Acceptable Risk, and Medicine: posted 5/10/21

This was originally going to be a two-parter, but I haven’t written the second part (yet). The first part deals with exactly what the title says—the fact that every medical “intervention” (including taking Tylenol) has risks associated with it, and it’s our job to assess risks for ourselves.

It also talks about how people are in hospitals every single day, in ICUs every single day, and on ventilators every.single.day, because this is totally forgotten in reporting.

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Hospital 101: posted 11/23/20

Basically: “yes you can be in the hospital and not feel terribly crappy.” And, “No, being in the hospital does not mean that you’re going to die.”

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COVID and lung function: posted 7/7/20

Yes, you can recover lung function after being really, really, REALLY sick! If my crappy old CF lungs could do it, yours can too!

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So that’s the listing of the “big” COVID posts. I have some other things scattered in Quick Takes and various places, but these are the long forms, so to speak. I hope you find them helpful.

Here is Patty as reward! :)

She has EIGHT teeth! And can say cheese!"

-6-

I went swimming for the first time in two years! YAY! It felt so great to be back in the water!

-7-

And finally I wrote two posts this week! ICYM them:

An awesome clinic visit

The state of the Writing Wicket

Writing: The State of the Wicket

“Woman Reading”, Edouard Manet

I’ve been getting a lot of questions lately about a second book. (Including from my doctor!)

“Are you writing one?”

“What are you writing about now?”

“So you’re writing a second book, right?”

Welllllllllllllll.

(It’s not bad news, don't worry.)

Here’s the deal.

For someone to get to write a second book, the first book has to sell.

Yes, it’s true. It all comes down to money. A publisher has to see sales to think, “Oh, OK, this person has an audience, so it’s worth our outlay of cash to support this person’s writing and give them a book contract.”

So, yes, if you want another book, you have to buy the current book.

I know so many of you have, and I am incredibly, stupendously grateful for your support. Everyone who has left reviews, or written blog posts, or bought copies for friends—I love you. I am so grateful to you.

If you would like to buy a copy, her are all the places you can get it:

Amazon

Ave Maria Press (they often run sales, and I always post about these on the blog and on my social media accounts)

Barnes and Noble

As a NOOK book and on Kindle

Books a Million

Indiebound (you can also order it through your local indy bookstore!)

Wal-mart

Also your local Catholic bookstore or indie bookstore can order it for you. Just ask them! They will do it!

I hate, hate, hate selling things. I hated selling candy bars for school, cookies for Girl Scouts, and cheese and sausage for choir. I HATE it.

But I know that if I want to earn any money writing, I have to ask people to support my writing. Which….I hate doing!

But it’s necessary.

If you already have Living Memento Mori, you can also get Catholic 101, my ebook about the basics of Catholicism, inspired by the years I taught first grade CCD. You can download it, read it on iPad or Kindle, or even print it out! You can gift it!

AND newsletter subscribers get 15% off the $5 price!

Another way is to support my Patreon. It’s more behind the scenes notes on creativity and what I’m working on than here, and it’s somewhat sporadic in posting, but there re goodies you can get and things that I only post there. So if you’re really interested in my inner workings, or just want to support my writing, that’s the way to go. Memberships start a dollar. You can become a patron here!

OK after all that, Patty cleanser!

She has EIGHT teeth now!

OK so on to fun things: projects!

There are a few projects I’m working on.

The first one is Catholicism and Outlander, and I talk a lot more about that over on Patreon. I’m in the research phase of that one right now! (Which means reading and watching TV, POOR ME!)

The other one is a really, really basic knitting series. As in, yes, needles come in packs of two (I seriously did not know this). I know that I wanted something like that when I was starting, and it didn’t exist, and even “beginner” books were not really for beginners! So I’m working on that as well.

And that, my friends, is the state of the wicket!

Yearly Testing Wrap-Up!

Yesterday was a very, very good—albeit hot—day at the New Resort, where I had my annual testing—the sixteenth edition!

Yay!

In short, everyone is very happy, and things are GOOD!

So, if you’re new here, let me give you an overview.

“Yearly Testing” is exactly what it sounds like—in-depth testing that I have done every year (duh) to see how my body and my lungs are working post-transplant. This is a great way to update baselines, to get a full picture of my body, and see how things are going. The “menu” changes from year to year. In the first five years, I got a CT scan every year, and a bone density test, and an ECHO and EKG. (I dislike ECHOs muchly, because I hate being touched around the breastbone area, and where do ECHOS take place? RIGHT THERE.)

This year, I had: lab work, full PFTs (I’ll explain that in a second), a chest x-ray, a treadmill test, and a bone density test, in addition to a visit with my doctor (Dr. K, whom I love. He’s from my hometown!)

My bone density test was a few weeks ago and it was fine. I am actually very proud of my bones. Prednisone can affect bone density, leading to early osteoporosis and other unfun things (and CF can do this too, since we can have poor absorption of nutrients—I don’t have this problem). So, my bones are excellent. Yay!!!! (I do take Vitamin D and Calcium supplements in addition to my love of eating dairy. :))

Testing day (Monday) kicked off with a visit to the lab. I have to say it’s much nicer now than when all the COVID things were in place, like temperature testing and all that. You can actually move through the lobby and hear people! (You still have to wear a mask in the hospital.) A very nice nurse accessed my port after we called clinic to get my blood orders because they were not in the computer. (This was repeated throughout the day, and I think it was tech gremlins, as opposed to the nurses not putting them in, because my nurses are conscientious like that.)

After that I had my “lunch break”, where I went to the local French cafe.

I mean, don’t you feel like you’re in France?

Here’s a tip for when you have to do things you don’t want to do, or are less than enthused about, or if you’re having a long day: plan good points in your day. For me, it’s stopping at this cafe and having delicious lunch. It’s a nice way to recharge and layer not-fun things with fun things.

(It’s not that I mind all the doctor appointments. I’m used to them. But it is a long day, with a lot of driving and meandering through medical halls in a place I’m still acclimating to [so I don’t always know where things are!]).

After this I headed to the main hospital for my chest x-ray (which, really, I could do in my sleep by now, just give me the button, folks) and “full” PFTs.

Generally PFTs involve something called “spirometry”—and that’s all I do at a regular appointment. This measures lung capacity (I’m massively simplifying here, if you want more, here you go) by having you take in a deep breath and then pushing it out hard and fast. So when I say I have X lung function, that’s how I know. I usually hang out in the 50s, which is good for me. This is because when I had my transplant, my donor was taller than I was, so my lungs had to be trimmed, so that lessened capacity, as it were, and my surgeon also nicked my diaphragm, which also affects function. But I mean, 50 something is a hell of a lot better than nineteen percent function, which is what I had pre-transplant. But it does mean that I don’t have “normal” capacity, and this is why I dislike wearing a mask so much—it feels like someone has clamped their hand over my mouth. And I did notice yesterday that I lost about 4% oxygen saturation when I had a mask on. So. Take that as you will.)

Anyway, for yearly, we do all the tests, which also measure exchange of gasses in your lungs and other things like “tidal volume” and diffusing and all sorts of things. I just look at the numbers. Unlike at the First Resort, the screen here is turned away from me, so I can’t see the numbers on the screen and have to check them out using MyChart or asking my nurses! But my doctor said they were good, so I’ll take that as they went up, or they’re the same.

After all this, I made a trip to the local yarn store, because I MUST GET YARN, and that was fun. I will discuss all this in a massive yarn along that I owe you and which will come in August. :)

And then it was back to the hospital for my visit with my nurse, Kim, and my doctor. We talked about results and basically everything is great—I killed it on the treadmill test and was super happy.

(Oh, sorry, treadmill test—basically you walk on a treadmill for 6 minutes while the machine increases speed and incline. I did much better than in February, probably because I’m back to living my life again, YAY!, and I feel much stronger. My oxygen saturation was 98-100%! Which is EPIC! YAY!!!!!! And my heart is doing its thing! Yay heart!)

As one doctor told me last year, “We just have to not break you.” At 16 years, that’s really the goal.

But the other thing? I don’t have to go back to see my doctor for a YEARRRRRRR.

via GIPHY

Now, some centers have their patients hit this milestone after, say, 10 years. Or even five. I have been going every three months because, back in Ye Olden Times, my doctor’s office was on my way to work, and do to PFTs, which I need to do every 3 months, I had to actually go to the doctors’ office, because that’s where the PFTs lab was. So it made no sense to go in and not see my people!

However, now, the Resort is on the other side of town, and it makes less sense. So this is a GREAT thing! I can do labs and PFTs at a building off campus and just having those done is easy-peasy and takes less than an hour. So I can still have my fun French lunches and get my tests done so everyone is happy.

Obviously if something goes south, I will report it ASAP and then I might have to come in, but that’s how life is all the time and I’m used to that.

But this is a great thing and I’m really happy that one, my doctors are happy, and two, that I feel so much stronger and more fit. A lot of this is from, like I said before, just getting back to living my life, and also seeing Patty and Di and their family and going on vacation, but all of this is, again, LIFE. As in, not sitting at home not doing things! YAYYYYY!

So that’s how that went, I am very happy and thrilled that I had a good appointment and can now relax for a good long while! (Yes, I do get nervous about finding all these places and paring and all that stuff. It’s just part of the transition—going from a place where I had gone for thirty-six years and that I could walk in my sleep, to something big and new. It’ll get better.)