Emily M. DeArdo

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Eighteen

CF, essays, family, journal, transplantEmily DeArdoComment

This is a photo of me and my godson, Ryan. (He’s also my cousin.)

I was fifteen when he was born. When I received my transplant, he was seven years old.

I loved him insanely. I kept his photos in my locker, and my friend Amilia remembers that we used to call him “baby.” (I still love him insanely, don’t get me wrong. The insanity of love does’t wane.)

He’s 25 now. He works in Pittsburgh and has a degree in economics. He’s learning Japanese.

When I was on the list, when I thought I might not get to see him grow up, one of the things I wrote during that time was a letter to him—things I wanted him to know.

Fortunately he never received that letter, because I did get to see him grow up. I saw him lose teeth, make his first communion, heard his voice break and his body shoot up in height, and I went to his high school graduation party and I know him as an adult.

Patty is three years old. When I had my transplant, her mother (my cousin) wasn’t even married. Neither were my siblings.

My nieces—sweet Madeleine and Hailey—weren’t even possibilities at that point.

Melanie and Madeleine (aka, Maddie, Baby Bear, Sweetheart, Baby Maddie….)

Bryan and Hailey (aka, Hails, Hailey Bug, Baby Bear, Munchkin, Baby Girl…)

Cheering on her favorite baseball player with Mommy!

There are so many gifts. So many things I didn’t even think of when I was twenty-three.

So many things I would have missed.

For some reason, I didn’t miss them. I got to experience them.

“I am, among all men, most richly blessed.”


Please consider becoming an organ donor, so that more families like mine can be blessed.

Also, my annual signed book sale is on! Get a signed copy of my book, a specially designed bookmark and prayer card, and free shipping, for $15! Email me with your address.













This Moment of June

familyEmily DeArdoComment

I spent the weekend in Pittsburgh celebrating my grandma’s ninety-third birthday. I hadn’t seen her since 2021, and I’m missed her; one of my cousins got married last summer but there was COVID so I wasn’t able to attend the wedding. (Boo hiss) It was so nice to see her again and give her a big hug!

I also loved seeing my aunts and uncles and catching up with my cousins. My godson is learning Japanese!

On Sunday we went to Mass with my Aunt Chris (who is also my godmother) and Uncle Tom, and one of their grandchildren, who is adorable. We had brunch at Eat ‘n Park afterwards. It’s never a bad day when you an have Eat ‘n Park, in my estimation.

I came home to find the first perfect cherry tomato was ready on the vines, and it was delicious. I can’t wait for the rest of them to ripen. There are about 30 tomatoes in various stages of growth out there right now.

How’s your June been?



I'm In Public Discourse! (And a sale!)

essays, CF, organ donation, writingEmily DeArdo1 Comment

I’m very excited to share that an essay of mine has been published in Public Discourse!

This is my first journal piece, and I’m very excited about it. In it I talk about how transplants work, the gift of more time, and (yes, of course) memento mori!

Let me know what you think!

And speaking of the book…

The Ave Maria Press Memorial Day sale is here! Through Monday, use the code REMEMBER23 for 25% off and free shipping. This is a great time to pick up a copy of Living Memento Mori (or get gifts for people!)

I hope you have a great Memorial Day weekend!

Everybody Hurts

CF, essays, transplantEmily DeArdoComment

(And yes, I did choose that title based off the song.)

One of the things I’ve come across a lot in 40 years is the idea that if you are financially well-off/secure, that you don’t suffer. It’s gotten to the point where I feel like I need to write about it here, to disabuse folks of this notion.

It’s usually not put that baldly, but that’s the gist of a lot of things I hear. Like, “Oh, a homily on suffering at a wealthy parish? They don’t need it!” Or “Well you’re financially secure, you don’t know what suffering is like!”

That’s…just not true.

Let’s start with the obvious and quote Scarlett O’Hara: “Money does help.” Yes, it does help. When my family was dealing with me being in the ICU, we weren’t worried about how we were going to put gas in our cars or keep the electricity on. True statement. Money helps.

However—my parents had a child in the ICU. A child they were being told was going to die. They had two other children to take care of at the same time, and potentially prepare them for the death of their sibling, while they were dealing with the possible death of their daughter, and maybe thinking they were going to have to plan a funeral. And at the same time, they were also dealing with my siblings’ schoolwork and teachers and all that jazz.

Yes, money was helpful—but they were suffering.

Life doesn’t look at your W2 or your 401(k) and go, “you know what, I think I’ll leave you alone because you have a good bank account.”

There are lots of different types of suffering, and financial poverty isn’t the only kind. There’s emotional suffering, physical suffering, combinations of all these things! Saying that being wealthy/well-off/ middle class negates any possibility of suffering “just ain’t so”.

This also goes with the whole, “Oh you’re thin I’m so jealous” thing.

Diane and me, May 2005

Folks. Look at that photograph. This was taken about a month and a half before transplant. I felt awful in this photograph. We’re at my grandfather’s surprise 80th birthday party, which I went to because it was his 80th birthday, even though my body was like PLEASE LAY ME DOWN AND LET ME SLEEP.

I weigh maybe 90 pounds here. The week after this party, I went into the hospital for almost a month. The sweater I’m wearing is an XS and it’s still hanging off me (look at the sleeves). Diane has a healthy paleness about her. I look sick. I was not healthy. In the hospital I was fed TPN (nutrition through an IV line) and lipids (fat!) to get me to gain any weight. This is NOT HEALTHY IN BIG CAPITAL LETTERS. This is a person near death.

And yet I had people telling me that I looked so thin! And making comments about how they had hips, and I didn’t, in a way to make themselves feel better about their bodies! (Seriously, they did this.)

I WAS DYING.

And people were looking at me, being jealous of my thinness.

That’s a problem, folks.

So please don’t think that because someone is financial secure/thin/good looking/happy, her life is just all sunshine and roses and awesomeness.

Everybody hurts.

Why the Best Narnia Book is Voyage of the Dawn Treader

essaysEmily DeArdoComment

It’s mostly because of Reepicheep.

Why is a talking mouse so important? You can read my essay over at Mere Orthodoxy:

Clearly, Voyage of the Dawn Treader is the best of the Narnia novels, and a big part of that is due to a talking mouse.

Yes. I’m talking about Reepicheep, the brave, swashbuckling Narnian mouse who is on a quest to find Aslan’s country (and defend the honor of the Kings and Queens of Narnia while he’s at it.).

Sure, a lot of things happen in Voyage that also give it the claim to being the best novel, the discussion of science and modernism versus tradition and religion (although religion and science aren’t actually at loggerheads), Eustace’s Pauline conversion, the growth of Lucy, Edmund, and Caspian, and of course the quest to find the seven lost Narnian lords, which gives the entire book its shape. All of these things add up to a tightly plotted and fast moving adventure. But I think that the reason it’s the best isn’t just Reepicheep, but what he and the other characters go through in the novel, which is growing up and becoming adult Christians.

In Voyage, the things that stop our heroes and heroines are themselves, which is true in our own lives. 

Read the rest here.

Forty

CF, essays, organ donationEmily DeArdo1 Comment

I’m forty.

I wasn’t supposed to be forty. This was a birthday I was never supposed to see.

When I was diagnosed with CF, the average life expectancy was mid-thirties. Then I almost died at nineteen.

If my organ donor, Suzanne, hadn’t made the decision to donate her organs, I’d have died at twenty-three.

But she did. And seventeen years later, I’m forty.

FORTY.

Unlike a lot of people, I don’t dread my birthdays. I celebrate them with full vigor, and this one, especially, was celebrated to the hilt.

My door was decorated by my brother Bryan and my sister-in-law, Sarah.

They also sent me a truly stupendous bouquet of flowers.

That night, my parents hosted a party for me at a local restaurant. We had a private room!

I did the name cards!

(Sarris chocolate is my favorite chocolate in life. It’s a Pittsburgh-based chocolate company and I’ve been eating it since I’ve been old enough to have teeth. My grandma used to have little bowls of their foil wrapped Easter egg chocolates in her house and I loved to eat them. So I thought they’d be a sweet treat for our guests!)

Some of my favorite people were there…..

Amilia came all the way from Illinois for the party!

Tiffany and Bill were there! (Alice was with her grandparents.)

Mary was there!

If you’re read Living Memento Mori, then you know about Rita, one of my favorite nurses—she was at the party!

And my brother and SIL were there too!

It was a fabulous party—it went on for four hours, which didn’t seem quite possible.

It was, simply, way too much fun.

Suzanne made all of this possible. She makes my writing this possible.

If you’re not an organ donor, please consider it. You can sign up online here.

Being a "disabled writer"

CF, essays, hearing loss, healthEmily DeArdoComment

violets in my yard

The other day on IG I saw someone asking if there were more Catholics who spoke about disability issues or accounts that focused on disability and faith.

Now, this, in and of itself, is not a bad thing but it got me thinking, which got me writing.

I am “disabled”. I put that word in quotes because I don’t really think of myself as disabled apart from my hearing loss. This is something that I’ve noticed, that the range of disability—and who considers themselves disabled—is wide.

And that’s the same as my interests. Like Elizabeth Bennet, “I take pleasure in many things.” I don’t just write about disability and faith, or just disability, or just faith! Taking a quick scan of my blog posts and IG feed, you’ll see babies (ok, lots of babies), knitting, flowers, food, paintings, books, games….all sorts of things. I’m interested in a lot of things, and that’s what I write about. Obviously I am also interested in writing about health because my health is a big part of my life. I do advocate for accommodation. (Here are all my posts with the disability tag)

But I’m never going to start a conversation with “Hi, I’m disabled.” I don’t start by telling people I have CF or I had a transplant or I’m hearing impaired. The latter does tend to come up earlier than usual when I talk to people because, well, it’s sort of urgent if I can’t understand you.

Everyone handles disability or illness in a different way, but don’t expect us to just talk about those things. Some people do—that’s what they feel called to do. But if I just wrote about my disabilities I’d be bored stiff and so would you! I’d run out of things to talk about!

I like to talk about knitting and Maddie and Patty and travel and cooking and TV shows and movies (and speaking of hearing impaired-ness and movies, go CODA!). Don’t just see the disability. See the person behind it.

And also, at the same time, don’t think that we’re exceptionally “brave” or “strong” people because we live with a disability. Seriously. I’m not a saint (ask anyone who knows me, not a saint definitely not). We’re people doing the best we can with the life we have. That’s all.

Snow Days

books, essays, knittingEmily DeArdoComment

(This project is done! I can’t wait to show you in February’s Yarn Along!)

My general thought on snow is that if I don’t have to go anywhere, it’s fine. I really hate scraping off my car and all the extra time that snow entails when traveling, especially if it’s before the sun has come up. But since I work from home now I generally like it a lot more than I did!

I especially like the sense of quiet and coziness that snow brings. I feel like I can knit, read, putter….and that’s all productive, instead of feeling like I should be out in the world, doing other things!

But when I do go out in the world, there are babies to be snuggled!

Alice and I, becoming friends!

I mean really, is there anything better in the world than holding a baby for hours? There are parts of my chest that just seem made for a little baby head to nestle in—and they probably were! :)

Truly, this is divinity. I am very glad that Tiffany, Alice’s mom, allows me to be so adoring over her child. :)

So while I do have to go out into freezing cold-ness tomorrow for labs and PFTs, it’s nice to come back to a warm hobbit hole!

Dangerous Crap

essaysEmily DeArdoComment

Internet stupidity makes Patty UPSET!

So today I read an article written by a priest that says that if you’re not healed of your suffering, you are….basically not doing Christianity well enough.

Ohhhhhhhhh I began to wail like an over-tired Patty when I read this.

I am linking to it, even though I don’t really want to give this article hits, because…..yeah.

Now, in fairness, I will note that the author says “possible reasons” at the beginning of his piece.

However it doesn’t cover the amount of sheer insanity that is spouted.

Here’s why you aren’t getting cured:

*You lack consistent prayer

*You lack faithful discipleship

*You lack complete trust

*You lack readiness to give total praise to God

*You lack the willingness to bring healing to all persons.

Do you notice a thread here? It’s all, you are not doing your part so you need to do more and then God, like. vending machine, will give you what you want. You need to do better.

At the end of the article the author says that well, God has his own reasons for doing or not doing things.

But look: This is dangerous garbage. To tell someone who is desperate for healing that they aren’t praying enough, aren’t trusting enough, aren’t doing enough—that’s crap! It’s like the people who have told me that the reason I have CF is because I haven’t prayed enough. It smacks of the attitude of “Oh, there, there, just do X and all will be FINE!”

What? No.

What, precisely, did Jesus “do” to “earn” his death? Did he not have total trust in God? Did Mary lack faith and prayer, or the willingness to give total praise to God, as she watched her son die?

Jesus says in the Gospel of John that the blind man is blind because that’s how he’ll glorify God.

In my book I write about this dangerous attitude. And I also write about how God uses suffering to draw us closer to him, deeper into prayer, and further into a relationship of trust.

Prayer is not magic. God isn’t a vending machine.

If you are suffering, do not believe that somehow, you are failing. Yes, through your suffering, God might be asking you to do more—to trust him, to enter into deeper prayer. But to enter into that with the goal of only gaining is not the right way to enter into deeper prayer. A real relationship with anyone isn’t about what the other person can give you or what you get.

Suffering can, certainly, be, as C.S. Lewis said, “God’s megaphone to rouse a deaf world.” It can spark conversion, definitely.

But we need to be very careful when we talk about why God is permitting suffering. We need to step away from thinking that if we’d only do X Y Z that we’d be cured.

God’s ways are not our ways, and suffering is a deep mystery that we will never totally understand. Don’t try to provide facile answers.

A Thrill of Hope

Advent, essaysEmily DeArdoComment

I’m featured over at Spoken Women, writing about today’s second reading from St. Paul!

Excerpt:

This Sunday, with almost two weeks left before Christmas, St. Paul tells us to “rejoice always!”

Do you feel like you rejoice always? Or rejoice at all? Do you have joy in your daily life? 

I’m going to make a confession here: I am a very naturally happy, nay, joyfulperson. In fact, when I was a contestant on Jeopardy!, a Twitter user wondered if I was trying to imitate Carol Channing with my enthusiasm. (If you don’t get that reference, google Carol Channing. You’ll get it.) 

I wasn’t. I’m just a naturally joyful person. So when St. Paul says to “rejoice always”, I can say I do that often enough. Not always, though, because, let’s be honest: It’s hard to rejoice always

Read the rest there.

Margin

Advent, essays, health, transplantEmily DeArdo1 Comment

Are you a person who needs permission to relax?

I am one of those people. Not to relax, per se, but to build in margin? To give yourself a break? That’s a problem I’ve always had. In some ways it’s good, because I can be counted on—I once did a performance of The Importance of Being Earnest in the midst of atrial fibrillation, because there wasn’t an understudy. I finished the show, went home, changed, and then went to the ER to get it fixed. (Seriously)

Sometimes it’s good that I don’t want to let people down. Other times, it’s not good.

But I think it’s especially important now, when everything is so busy, to remember that it’s OK to give ourselves margin.

For example: Before I had sinus surgery, I told the lector coordinator that I’d need two weeks off. I didn’t think I actually would be sick for two weeks but I thought, eh, you never know.

It turns out that yeah, I have needed that margin. This morning I thought I wasn’t going to make it to Mass. I didn’t fall asleep until almost 4 AM. But as the day went on (and as I’m writing this), I felt better. So I decided, yes, I could go. I had enough margin. I love Advent, so I knew it would feel good to go to Mass and I could wear one of my new dresses!

Said dress! :)

But, if I hadn’t felt good, then it would’ve been OK to miss Mass.

As I look back on my life, I see that there are times when I probably should have had margin, and didn’t. Like the high school semester that I had TB? I only missed four days of school, and two of those were for testing at the hospital. I should’ve missed a lot more. I was falling asleep in my Earth Science class! There was one day when my mom woke me up, and I was so tired I was crying. That day, I didn’t go to school; I just slept all day. We probably should have done that more. I should’ve said “I need this” more. But I didn’t.

The summer after I almost died? (TWENTY YEARS AGO, now!). I got a summer job. Probably shouldn’t have done that.

Post-transplant I knew that margin had to come into my life in a big way. I couldn’t push myself like I had before. I really did have to listen to my body. And I’ve done a better job of that, over the past 16 1/2 years. But it’s an ongoing process. I need to learn to cut myself some slack, because I can be hard on myself, and I’m guessing you can too.

It really is OK to step back. The world will not end if you take time off. It really, really won’t.

My tree isn’t decorated yet. My nativity isn’t up yet. Normally, both those things would be done. But they’re not. And I’m not pushing myself to do it, either. I’m letting myself feel out each day and see what’s happening in my body. I’m feeling, right now, like the nativity will happen tomorrow. But I don’t know for sure and that’s OK.

It is OK to need margin and space. It is OK to rest.

If you need permission, you have my permission.

REST. Give yourself slack. Create margin. It’s OK.

Life Lesson: Get In The Picture

CF, essaysEmily DeArdo1 Comment
66BEC7C9-9780-490F-85AA-0114E10BDEE1.jpeg

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.

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--Sinuses & Stats

7 Quick Takes, essays, family, health, knitting, booksEmily DeArdo2 Comments
new-seven-quick-takes-header.jpg

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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

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

CF, essays, healthEmily DeArdo1 Comment
Diane and I as pre-schoolers, before my CF diagnosis. (I’m the blonde.)

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.

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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

Catholicism, essaysEmily DeArdo3 Comments

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.

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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!

essays, family, healthEmily DeArdoComment
“At the Millinery Shop”, Degas

“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. :)

Accommodations are not a "perk"

CF, essays, health, hearing lossEmily DeArdo4 Comments
An example of a lung function test result graph

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.

Sixteen

essays, transplantEmily DeArdo2 Comments
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I have now had my new lungs for sixteen years. They are old enough to drive. :-P (Actually, my donor was a 50 year old woman named Suzanne. So these lungs are now 66 and still kicking!)

The 16th year was hard. We had COVID. We had my transfer to a new center, which….to be honest is still sort of irritating, because adult hospitals just really do not care about their patients’ time in the same way a children’s hospital does. Kinks are being worked out. The diabetes stuff was….rough, not gonna lie. But also, huge strides have been made which is great.

AND there was Patty!!!!!!

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And getting to meet Patty!

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Even in the midst of worldwide pandemic, there is still joy. There is joy everywhere. Not every day, maybe. I’ve had days that were definitely not joy filled. I’m not a perpetual ball of sunshine. I know that there are days, weeks, months, years, even, that are hard sledding.

But the key is to find the moments that are good (or, less bad).

There isn’t a whole lot of data for post-lung transplant folk like me. the data sets I’ve seen go to 10 years, and there aren’t enough patients to talk about 15 year, or 20 year, data. I’m making data.

I love turning the pages on the calendar. I love having birthdays. I love getting older because I wasn’t supposed to get older. But because of Suzanne, my donor, I did.

And I am grateful and incredibly happy about that.

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Happy birthday, Patty!! (Houston Day 2)

family, travelEmily DeArdoComment
Patty, about to try her birthday cupcake.

Patty, about to try her birthday cupcake.

The 30th was my first full day in Houston and was also Patty’s first birthday!!

Our day started with this…

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Yes, Patty is very mobile—she can stand, crawl, go up and down the stairs, and walk while holding on to things, so walking is probably not far off! This was a great way to start the day.

I also read Johnny The Monster at the End of This Book, which is one fo my favorite things to read to kids.

We had breakfast…

and art time (I had brought my sketching supplies and the kids had a lot of fun with my watercolors and water brushes!)

Patty wore one of the dresses I’d gotten her for her birthday….

After her morning nap, with Frankie :)

After her morning nap, with Frankie :)

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After everyone was dressed and Patty had had her power nap, we went to Lupe Tortilla for lunch. It as raining but that did not deter the boys from playing in the play area!

The dress I got Patty is an 18M, so it’s big on her, but Diane put her in it anyway, which I appreciated :)

The dress I got Patty is an 18M, so it’s big on her, but Diane put her in it anyway, which I appreciated :)

Outside Lupe: L-R Bridget, Frankie (green shirt), Johnny, Susie

Outside Lupe: L-R Bridget, Frankie (green shirt), Johnny, Susie

Lupe was really delicious—I had the cheese enchiladas which were amazing.

We had planned on doing the yarn store after lunch. Susie crochets and wanted some more yarn (she wanted to build a stash, which made my yarn loving heart flutter). So after Diane did some banking things, we went to the store, only to find that it had moved! ARGH! Sadness! No new yarn! But it probably was for the best, since we had to go home and make birthday cupcakes for Miss Patty and get ready for family to come over to celebrate.

Diane made these amazing chocolate cupcakes, which I need the recipe for, and vanilla buttercream frosting (HOMEMADE VANILLA, people—we’re talking a big old mason jar worth. Massive props to Di.) If I get the recipe, I’ll share it here. But folks, these were goooood cupcakes.

For the party, some of Matt’s siblings came over—one of his sisters, her husband, and their four kids (she’s pregnant with their fifth), and also Bart, Matt’s youngest brother and Patty’s godfather.

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Patty and Bart

Patty and Bart

Di took Patty out of her birthday dress, in preparation for messiness…..

we sang, and then….we ate!

“What is this thing.”

“What is this thing.”

“I think I might like this….”

“I think I might like this….”

Going whole hog…..

Going whole hog…..

“I think it’s good.”

“I think it’s good.”

“Yeah, it’s good.”

“Yeah, it’s good.”

For her birthday I got her clothes, and also two Baby Lit books: The Secret Garden and The Wizard of Oz., because I have to get Patty books, it’s the law. Her aunt and uncle got her a pop cupcake (sort of like this one—I had never seen these until I got to Houston!) an a book with the same pop-up thing in the pictures. The popping is quite satisfying, I have to say. (Her older siblings also enjoyed the pop cupcake!)

After the party we cleaned up the bebe….

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And then relaxed the rest of the night. Di and Matt started watching a Three Stooges movie, which I had never seen, but it was funny—but I was TIRED. So I went to bed while they kept watching it, because I am an hour ahead of them and also my body was like, SLEEP NOOWWWW.

(Blood glucose does not like really hot or cold conditions, and Houston is warmer than I am used to. I knew that, going in, but I wasn’t sure how it would affect my BGLs. It turned out that I need a lot less insulin than I thought I would and there were times I had to ask Susie or Di to get me a cup of juice because my hands would have dropped it to the ground because my BGLs were low. But hey, learning experiences!)

So that was Miss Patty’s first birthday party!

Trip to Houston: Day 1, Meeting Patty

essays, family, travelEmily DeArdoComment

I’m going to give you a recap of my Houston trip—not exactly a blow-by-blow, but a sort of recap, since I like to read people’s travel recaps and I figure other people do too. And of course this is the best way to share photos. :)

So I got to Houston on the 29th, the day before Patty’s first birthday! Fortunately my flight was on time for takeoff, but we did have to go around Houston to avoid some rain and ended up flying over the Gulf Coast and then back up

Everyone was on hand to meet me at Carousel 12 and I was excited—and so were they!

Patty, fortunately, did not cry when she met me (great relief). Instead she studied me very intently. You could see the wheels turning in her little head, but then it clicked (Oh wait, I’ve seen this person on the phone….I know this voice….) and she smiled and giggled for me.

Dinner was at Matt (Patty’s dad)’s parents house that night—pizza and garlic knots for all!

Susie, with Patty and Frankie, in their grandparents’ kitchen.

Susie, with Patty and Frankie, in their grandparents’ kitchen.

Here’s a cast of characters for the trip:

Diane—my cousin, who is 6 months younger than me and shares a birthday with my sister and one other cousin of ours, Jill. Her father (John) is my mom’s older brother. (he’s number 2 out of the 8 kids).

Matt—her husband, whom she met at Notre Dame. He’s a CPA and a member of the Texas State Guard.

Susie—oldest of the 5 kids. She’s 12.

Bridget—second kid, age 9

Bridget and her AG doll, Catherine, in matching PJs.

Bridget and her AG doll, Catherine, in matching PJs.

Frankie—third kid, age 6 (he’ll be 7 next month)

Johnny—fourth kid, age 3

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Patty—fifth kid, just turned one (we know Patty, right?)

Beppo and Wilma—the cats