Emily M. DeArdo

writer

essays

Greetings From the Resort

essays, healthEmily DeArdo3 Comments
B3333815-FE89-4CA3-BF4C-630FEF18F500.jpg

Yes, I’m back in the Resort.

For new readers, I started calling Children’s Hospital “The Resort” once I started working, because all my vacation days ended up being spent here, and the name stuck.

On Thursday I started having a lot of abdominal pain. After I talked to the nurses at clinic, they mentioned that I had gall stones on my last CT scan that I had when I had the Awful, Nasty Stomach Bug. So back I went to the local ER (It’s run by a local hospital, so it’s a good one, not like some tiny little thing), where they ran tests and determined that I had….pancreatitis.

My old friend!

I haven’t had a bout of this in years, but once that diagnosis came in, I knew what I was in for. So Mom and I went back to my place, I packed a bag, and dad drove me to Children’s, where I am currently writing this.

The treatment for pancreatitis is: IV fluids, anti-nausea meds, and pain meds. That’s in. Blood is drawn daily to see how the lipase (a pancreatic enzyme) is doing—with pancreatitis this number is high. We want it to be around 50 or so, and today mine was 480 sometimes, which is still better than the 1600 it was when I was first admitted!

Giselle the Unicorn.

Giselle the Unicorn.

So, all in all, not too bad, except for being in a hospital, but even that’s not bad, because I don’t really get bothered. There’s no fancy treatment for this, just meds through an IV line. At some point I’ll try eating “clears” (broth, jello, etc.) and if that stays down then we’ll try more substantial foods.

So, that’s where I am right now. But big news coming later this week! (If you already subscribe to the blog, you know what the news is….)


Endocrinology (Or: Not Personal Failure!)

essays, healthEmily DeArdo1 Comment
Stacks of Wheat (End of Summer).jpeg


So the past two weeks have been sort of nuts, and hence why I haven’t written. So I’ll bring you up to speed and explain the title.


After my last post, I got a killer stomach bug, and I ended up in the ER. When you’re me—meaning, you take a lot of meds, you have blood sugar level issues, and you need to be able to keep things down—you don’t really “wait out” a stomach bug. (In fact, I learned today I get to give myself four hours before going to an ER for treatment.)

So after a day of nausea and 12 hours of vomiting (WHAT JOY) and abdominal pain, I took myself to the local free-standing ER, which is excellent. My mom met me there, Dad drove my car home, and four hours later I’d had IV fluids, anti-emetics (anti-vomiting meds), and pain meds, I felt a lot better, everything calmed down, and I got to go home. I spend Tuesday sort of out of it. Wednesday had a ton of energy and did laundry and some taking out of trash. Thursday, pretty back to normal—but I needed to take my car to the service place to get a tire patched. Friday, normalcy! Saturday, Harry Potter tea with my writers ‘ group (post on that coming), and I went to Mass for the first time in two weeks. Hallelujah!



Woman Bathing Her Feet in a Brook.jpeg


So, that was last week. This week, the tire repair didn’t hold, so I had to call AAA to put the spare on on Monday, get the tire checked out Tuesday, to find out I need a new tire, which will be on my car tomorrow, which meant that I had to borrow my mom’s car to get to my endocrinology appointment today.

Honestly, I was really freaked about this appointment. I had visions of insulin shots multiple times a day and constant finger sticks and food restrictions and all sorts of evil things conjured by the word “diabetes.” I really, really, really didn’t want a heavy-duty diagnosis. I was freaked out.

I had a long appointment today (2 hours), where I met with great, wonderful, smart people, who went over my history and all my labs with a fine-tooth comb. They looked at everything. They asked about family history. The fact that my mom has five sisters, and that my grandma is almost 90 and in pretty darn good health, is great for my doctors because there’s a lot of female family history to look at when we’re talking about health indicators.

My endocrinologist thinks that what I have is a type of CF related diabetes (CFRD), which is not Type 1 diabetes, even though insulin is involved, and it’s not type 2 diabetes. It’s its own special thing. But what this did for me was release a big burden I’d been carrying around—the idea that I had done this to myself. That if I had done more or tried harder or whatever, that I wouldn’t have been in that office.

That’s not the case. Dr. W (the new doc) said that just about every CF person will get CFRD at some point, because we’re living longer. The severity will vary, but it’s probably going to happen. Throw in the fact that I’m on three drugs that mess around with blood sugar production and regulation, and, yeah. This was, most likely, going to happen.

We don’t exactly have a plan yet, because we need data, which will be provided by two things:

Me checking my blood glucose level at various times a day

Me wearing a continuous glucose monitor (CGM) for a week. This little do-dad checks your blood sugar every five minutes with a little sensor. So we’ll get tons of data, cascades of data! And with that data, we can make a plan.

The other great thing as that this doctor asked me if I was OK with this plan. That’s so important to me. I want to be OK with what we’re doing. And with this doctor, I do. I feel secure and I trust her to do the right thing to get things under control.

So even though I’m going to be doing a lot of finger sticks over the next few days/weeks, I don’t really mind. Because I don’t feel like a total failure, like I brought this upon myself. I didn’t. This is the result of being 37 with CF and a double-lung transplant. It’s the way it goes.

We get the data, we make a plan, and we move on.



Going on Retreat Part Three: Sunday Morning

essays, CatholicismEmily DeArdoComment
IMG_9821.JPG

Part One is here

Part Two is here

My alarm went off at seven the next morning, and I sort of hustled, because breakfast on this day is continental, served in the lounge; it’s mostly cinnamon rolls and bakery things, and if you’re slow, the good stuff is gone. :) (Good stuff meaning danish, in my world). So I hurried, dressed in my Sunday Mass clothes and got a cherry danish (win!).

After that, I went to the chapel to pray lauds before the closing of adoration at 8:15 by Fr. Stephen. (Even if you can’t make a retreat, consider going to adoration? Even if it’s five minutes! Go stop by and say hello to Jesus! Get to Mass five minutes early, if there’s no adoration chapel where you live.)

IMG_9806.JPG

After the close of exposition and benediction, we had the last conference of the retreat, on Confirmation. This was followed by a bit of Q&A, and then the last Mass of the retreat.

After Mass was over, we could talk—silence was lifted. So brunch was a noisy, happy affair of everyone chatting over quiche and apple pie bars. I enjoyed talking to the women at my table (especially Olivia) and getting to know them better.

When you spend a weekend in silence praying with people, a closeness forms, but it’s a weird closeness, because you feel close to people you don’t know anything about! So it’s nice to learn a little more about them.

After brunch we cleaned out our rooms and left. “Cleaning out your room” means putting the trash bag outside your door, stripping the bed and stuffing the sheets and towels inside the pillowcases to be picked up, and making sure you didn’t leave anything behind.

I was home a little before noon, and I spent the rest of the day taking a nap, unwinding, and getting mad at the Ravens during the Ravens-Steelers game.

(Me to my mom: I hate the Ravens.
Mom: You just got back from retreat, you can’t hate anybody!)

So, that’s what I did on my retreat.

There are things I could share—how I pack, what I bring, etc.—I could share notes with you….or I could answer your questions! If you have any questions about retreats, let me know in the comment box and I’ll answer them!

Going on Retreat Part Two: Saturday Afternoon

essays, CatholicismEmily DeArdoComment
Brilliant Saturday afternoon under the oak trees

Brilliant Saturday afternoon under the oak trees

Part one is here


So after lunch we had free time until 3:00, when the Divine Mercy Chaplet would be said in the chapel. Priests were available for confession, but other than that, there were no talks planned and you could do whatever you wanted.

Since it was a gorgeous fall day, I went outside to spend some time enjoying the weather while I read my books. I read more of I Believe In Love and wrote a few thoughts in my journal. Some people were making the stations of the cross at the outdoor set that’s been erected, which I would have done, but we were saying stations communally at 5, and I was going to do that.

I took a really brief nap—10 minutes!— then went to the chapel, prayed a bit, and read some more. There’s a small side chapel where I like to sit:

The view from the side chapel

The view from the side chapel



Interior of the side chapel

Interior of the side chapel


The reliquary of St. Therese and St. Margaret Mary Alocoque (who promoted devotion to the Sacred Heart) is also in here.

St. Margaret Mary’s relic is on the left, and the other two are St. Therese. The documents are certificates that the relics are authentic.

St. Margaret Mary’s relic is on the left, and the other two are St. Therese. The documents are certificates that the relics are authentic.

This is the hardest part of retreat to describe, because it’s so interior, but to me it’s also the best part. Yes, I pray, yes, I read, but I also just talk to God, and listen to His replies. What is He saying to me? What is He asking me?

It’s also a good time to take stock of where I am in my religious life. Is it going well, or not? Am I more fervent than I was a year ago, or not? Does my schedule need adjusted so I have more time for prayer? What is stopping me or hindering my prayer? Distractions? Laziness? (Meaning, I just don’t make time for prayer, when I know I could and should be praying?) Venerable Fulton Sheen said that the spiritual life is meant to grow, not stay stagnant. It’s like our bodies—they have to continually grow. If our bodies stopped growing, we’d be in trouble! So the spiritual life is like that, which is one of the reasons retreat is so important. We have to check in, and it’s a lot easier to do when there aren’t any distractions and it’s quiet!

So I write, and I read, and I ponder, and I listen.

Statue of St. Therese in the main conference room.

Statue of St. Therese in the main conference room.


After the quiet period, we had the second conference, this time on Baptism, its roots in the Bible and Jewish tradition, and some other points.

Some of the quotes from Fr. Stephen:

“Genesis is like algebra—it’s about relationships.”

“We have a duty to participate in God’s life, with even deeper communion and even deeper fellowship.”

“God’s commitment to us began at our own baptism. Our mission is revealed—we are bound to Christ.”

“We read Scripture in its totality!”

And one of my favorite things I took away from the conference—anxiety and fear push us into a moment that doesn’t exist yet, and it might never exist! In those moments, call upon God who loves you and ask Him for help and what I should do.

St. Therese in the chapel—this statue isn’t normally there, so I’m not sure if they moved it here for her feast day celebration or if it’s a new addition. Either way, I loved it!

St. Therese in the chapel—this statue isn’t normally there, so I’m not sure if they moved it here for her feast day celebration or if it’s a new addition. Either way, I loved it!

At 5:00, we said stations of the cross in the chapel, followed by Vespers and then dinner. The third conference, on the Eucharist, was at 6:45, and as always, in between things you had your own time and space to pray or read or rest or whatever you wanted to do.

(After dinner I actually went on a walk with a friend—Olivia—that I “knew” on Twitter—it was so nice to meet her in person!)

The Eucharist talk was extremely enlightening because it connected our celebration of th Eucharist with the Jewish tradition and really drew strong parallels, as well as illustrating how Jesus was in no way speaking metaphorically in the Bread of Life discourse (John 6). Fr. Stephen mentioned Scott Hahn’s The Fourth Cup, which I haven’t read yet (but will!), but I have read (and am currently re-reading) Brant Pitre’s Jesus and the Jewish Roots of the Eucharist, which is a full, book-length treatise on Fr. Stephen’s topic and is a wonderful explanation fo the Eucharist. It’s sort of mind-blowing, actually.

(This is where retreat is a vacation, yes, but it also causes you to learn, if it’s a good retreat. Yay learning! Yay knowing more about our faith!)

(In fact, one of the most mind-blowing things Fr. Stephen shared was this: the Passover lambs, used for sacrifice at Passover in the Temple, were specially raised, because they had to slaughter more than two hundred thousand of them every year. So there were whole flocks just of these pascal lambs.

These lambs were raised in Bethlehem.

The flocks that the shepherds were guarding on Christmas were…..lambs of sacrifice.

The paschal lambs were at the birth of the Paschal Lamb!)

Our Lady of Perpetual Help in the chapel.

Our Lady of Perpetual Help in the chapel.

We had one of my favorite things—Eucharistic Exposition—at 8:00. This means that the Eucharist is displayed in the monstrance, and we have all-night vigil, because you can’t leave the Exposed Host alone. So all night, women came and went from the chapel to spend time with Jesus in prayer.

My hour was from 10 to 11. Before then, I had changed into my pajamas and slippers —yes I went to the chapel in my Corgi pants and slippers!—and took my meds so that when I got back I could just go to bed.

Adoration is really a beautiful thing, and holy hours are my favorite way to pray. If you don’t make them, I highly highly highly recommend it, and so do the saints!

After holy hour, I went to bed, because the alarm would go off at 7 again, for the last part of the retreat….

Going on Retreat: Vacation With God

essays, CatholicismEmily DeArdoComment
IMG_9839.JPG

Vacation with God?

Seriously, Emily?

Yes. Because to me, retreat is definitely part-vacation.

Think about it:

You don’t have to do any laundry or cleaning.

The food is provided for you.

There’s constant tea and coffee available, so you don’t even have to make your daily cuppa.

You can sleep whenever you want, in a private room. No one comes in and bothers you!


I mean, this sounds pretty good, right? At the least it’s a vacation from laundry, phone calls, and cooking!

A retreat is really as detached as you want to make it. You can choose to bring your laptop and check the news every hour. You can scroll on your phone. You can call your kids. But really, the best retreats—and by best, I mean most fruitful, in my opinion—are the ones when you are, as the Carthusians say, “alone with the Alone.”


*

Every retreat I’ve ever been on has been silent. I started going on them when I was in my mid-twenties, and they’ve always been in the same place—St. Therese’s Retreat House, here in town, about ten minutes from where I live. Silence has an appeal to me on a few levels—one, ever since my hearing went south, I like having a few days when I don’t have to listen to people, and try to understand what they’re saying, and two, because I also like to talk, it’s good for me to not talk. It’s good to just be quiet.

I realize that not everyone likes silence as much as I do, but I do think it’s important to shut up and listen to God every once in awhile, and that’s really what retreat is—that time to sit down, shut up, and focus on God for a few days.

Spiritually, we need retreat. We need it the same way we need vacation. (When I don’t take a vacation, I can tell. My body can tell. When I don’t go on retreat, it’s the same deal.)

I highly recommend everyone look into taking one, even if it’s a “quiet day” offered by a local parish, where it’s a few hours of silence, or a day of recollection. They’re important for our spiritual lives.

*

So I’ve talked a lot about retreat on my blog before, but this time I thought I’d walk you through what happens. This is going to be a multi-parter, so here I’ll take you through Saturday morning.

A look at the “old” residential part of the retreat house.

A look at the “old” residential part of the retreat house.

These retreats run from around 5:00 on Friday to around noon on Sunday. They are usually “preached”, meaning that there’s a priest who will give talks around a certain theme. I’ve heard them preached on the seven deadly sins, Mary, St. Therese, and this one was about the Sacraments of Initiation and their Biblical roots. Every one I’ve gone to has been preached by a priest (which I prefer, because then you have access to the sacraments in an easier way than if, say, a sister/nun or a layperson preaches the retreat, and a priest has to be brought in). I try to go to one a year, but they’re offered twice a year, once in the fall and once in the spring.

The amount of talks vary—anywhere from three to five—this one had four. There is daily Mass and the opportunity for confession, as well as other devotional practices.

The important thing to remember is that you do not have to do any of these things. I mean, obviously, you went on retreat to pray, and you probably should go to Mass. :) But if you want to sleep in and miss morning prayer, that’s fine. If you don’t want to go to every conference, that’s fine. Etc. No one is taking attendance and no one will make you go or do anything. It’s your retreat.

Some retreat guides tell you not to bring books. I laugh at this. To me, books—spiritual reading only—are fabulous springboards into prayer or examination. I generally bring a few. I don’t read them all, and I’m not speed reading, but I do find them really useful, and I always have. If you don’t, then don’t bring them. Most retreat houses have books/a library/materials around for you to read if you want to, and they always have Bibles. (Bring your Bible, for sure.)

The retreat house/organizers will tell you what you need to bring. Towels, linens for the bed, etc. are provided, but if they don’t tell you, contact them and ask. (My first retreat I didn’t know linens and pillows were provided so I brought them! Ha!) You’ll need comfortable clothes. Generally, in my experience people tend to bring something a little nicer for the Sunday Mass, but it’s not a fashion show. You might want to bring a few snacks of the non-perishable variety. (I always do, because I have to take my evening meds with food. We get good meals at the retreat house, but no snacks.)

*

The Lourdes Grotto on the property

The Lourdes Grotto on the property



I try to arrive early, as in before five, and check in. Once you check in your get your room assignment, so you can go unpack and settle in before the retreat begins. There are sign-up forms for volunteering to help with devotions and the Masses throughout the retreat—I always sign up to do one of the readings, because I really love being a lector at Mass and I rarely get the chance to do it!

I generally go to my room, unpack, set up my alarm clock (very important, since I won’t hear the bell that the retreat league uses to wake us up!), then go to the grotto (above), to pray a bit, usually a rosary. If the weather’s bad, I go to the chapel. This serves as a way to bring my mind into retreat and to slooooooooow down. It helps me forget about traffic, anything that’s been bugging me, any extraneous things—it’s just me and the prayers.

IMG_9791.JPG


The retreat starts in the main conference room around 6:00, when one of the women from the retreat league welcomes us, talks us through the layout of the retreat and the house, and gives any housekeeping notices. Dinner is after this in the dining room, and we can talk at dinner. The food is always great.

After dinner, silence begins. This year, we didn’t have a conference on Friday night. We went right from dinner to Mass and vespers. Mass was at 7:45. (Dinner doesn’t take an hour to eat—so we were OK with the fast before Mass!) After Mass there was abbreviated Vespers (I said that plus my own Vespers from the Liturgy of the Hours [LOH]), and then after that, there were confessions with two priests. I went to confession, said my penance, and then went to my room to get ready for bed and go to sleep.

On retreat, confessions can be a little longer—people tend to confess more, in my experience, and priests also tend to offer a bit more counsel. So if you’re in line, be prepared to wait a bit, and remember that if you have questions or want counsel, the priest will give it to you too (usually. Some don’t.).

There is no “lights out”. You can stay in the chapel if you want. You can read in the main lounge. As long as you’re quiet, you can pretty much do whatever you want.

After confession I went back to my room with a cup of hot cocoa, took my meds, read a bit, and then went to bed. My alarm was set for 7, and hopefully it wouldn’t be so loud that it would terrify everyone else into awakeness. :)


*

Saturday morning

Saturday morning


My alarm did not wake everyone, yay, but it got me up at seven. The bell rang at 7:30 but I like to give myself a little leeway to get ready—I don’t like to be rushed in the morning if at all possible. At 8:15 there was lauds in the chapel, and then we had breakfast. I had gotten to the chapel early so I said the LOH and had some mental prayer before we prayed in common.

Morning prayer

Morning prayer

After breakfast at 8:30, we had the first conference of the retreat, setting out the general overview and talking about the use of light and dark in Scripture, echoes between Genesis and revelation, how water and light are used, and things like that—providing an overview to the Sacraments we were going to study. “Christ provides absolute concrete stability,” Fr. Stephen said. Which is true!

After the conference, we said the rosary in the chapel (joyful mysteries, since it was Saturday—I prayed for all of you!), and then had Mass, followed by lunch.

I was reading The Story of a Soul, which I hadn’t read in a long time, and I was also reading I Believe In Love, which is one of my favorite books ever, and is based on the teachings of St. Therese. So both those books complemented each other and provided a lot of material for prayer and pondering.

Meals in silence aren’t really that hard—you just have to be aware of what people want. Since I use my eyes more than the normal bear anyway (because I can’t hear as well as y’all can, so I have to use my eyes to survey the surroundings and get information), it’s easier for me to see when someone might want the bread basket or the water pitcher. There’s quiet instrumental music playing in the background, so it’s not silent silent.

In the next post I’ll talk about the rest of Saturday!

A Simple Life One: Reset Day

essays, Simple Life SeriesEmily DeArdoComment
simplicity tag two.jpg

How can we, twenty-first century folk, who are super connected and crazy busy, create a life that’s simple, but yet is full of what we want—the good things of life?

How do we disconnect from all the crazy voices that surround us, and instead focus on the voice of God?

It’s not easy.

So I’m going to write an (occasional) series on how we can create simplicity in our lives, that gives us space and margin, but also is practical and do-able.

( Before we start:

I’m single. Yes. I know that makes my life easier in many ways. I’m only responsible for myself, all the food in the house is what I want to eat, I don’t have to clean up after anyone or put anyone to bed or take anyone to school.

At the same time, though, I also don’t have any help. No one else can go to the store or cook dinner for me. Everything I do, is done by me.

So I don’t want an argument in the comments section about how I’m single and I don’t know what I’m talking about, or how easy married people have it.

There are pros and cons to everything. The end. )


*

IMG_9045.JPG

One of my favorite things to do is make a list. I’m a huge list maker. So I’d suggest beginning that way here as well, by taking a “reset day.”

I discovered this from this The Art of Manliness post, and Kristin Foss also talks about it in her Daily Tidy workbook.

Essentially, you clear the decks, both physically (as in, your physical space) and mentally.

The Art of Manliness suggests taking a day off to do this. Now, again, I can do this whenever I want, because I have no boss. If you are like most everyone else, then you might want to approach this differently. Break each step down into days, i.e., one “hour” per day. (The things don’t all take an hour. at least not in my experience.) Break it up so you can do it at a pace that is doable to you. The post suggests that taking a day off might motivate you to stick to the routine you establish, because you’re giving up a vacation day to do it, and thus you won’t want to do it again. I think that has some sense to it. But if you can’t do that, then no sweat.

If you have children, I still think you can do this. The first step is to “clean the house”, but it’s really, do what you can in an hour. Put things away, do the dishes, take out the trash, make the beds—the “low lying fruit” so to speak. This isn’t the time to deep clean. It’s the time to deal with the surface clutter that nevertheless causes issues and creates frustration.

The second step, “Brain dump”, can be done anywhere, really. You can do it during your lunch break, at a coffee shop, after the kids go to bed, when they’re napping—really, whenever. You can do it right before you go to bed.

The third, “Take care of as many to-dos as you can”, is also pretty practical. Remember that, if you’re following the layout here, you’re limiting everything to an hour. You’re not doing to-dos all day, and the timed nature of it is what makes it helpful in my opinion. You can only do so many errands or to-dos in one hour, but anything you get done is better than nothing!

Steps four-eight, I’ll leave you to discover by following the link. But remember that it’s just an hour, and if you have to break this up over eight days, you can. Tweak it so it works for you.

By doing a reset day, you’re giving yourself a clean slate and eliminating little naggy things. You’re giving yourself margin.

Leila Lawler has a great post about how washing your hair and cleaning the floors can remove the sense of Futility About Your Life, and it’s true. Those little naggy things can make you feel awful—they take up so much brain space! By doing just a few small things, you can feel like a new person!

(For me, it’s vacuuming. When I have clean hair and I’ve vacuumed, I feel very content with myself and my life.)

IMG_9728.JPG

And, also as Leila says, when you’ve gotten rid of this mental and physical clutter, you can free up your mind for other things (like prayer! And creativity!). (And I can’t find the post now and I’m going nuts, but trust me, it’s there somewhere!)

(Now, if a list-making totally overwhelms you…..then don’t make one, but I generally find the opposite happens. It makes me feel better about myself because it’s all there on paper!)

I think in order to start any talk about simplicity, we have to get things into at least a modicum of order.

So to this, I’d add a few other things:

Do you have a first aid kit?

Do you have wiper fluid and jumper cables and such in your car? (Because winter is coming!)

Do you know where all your important documents (birth certificates, passports, etc.) are?

If you want to simplify your life, get a reset day on the schedule.

I also suggest this post, from Auntie Leila: 10 Ways to Rescue A Bad Day

Of course there are lots of other things to talk about, and we’ll try to cover them—basic tidying stuff (because I am a work in progress here, aren’t we all?), cleaning, meal planning, finances, all that stuff. I’m not writing these because I Know All. I’m writing them because I have learned some things and in some areas I need more help, but you know, let’s get together and share our thoughts and help each other out!)


Amber

CF, essaysEmily DeArdo4 Comments
“The Song of the Lark”

“The Song of the Lark”

Amber has joined my buddy Sage.

It’s sort of funny. It used to be that CF kids knew each other more than I did—we’d have wards and camps and so people had lots of CF friends. I never did, because that was all on the way out when I was diagnosed. I knew one kid from my first admission—Elvis (yes, that’s his name)—but I never saw him again after those two weeks of my first admit. (Although, in a strange twist of fate, one of my best college friends was from his hometown, and his mom was his teacher.)

There was Jenny, my freshman year of college—we were on the same dorm floor. I don’t know what happened to her.

But post transplant, I met more people with CF. Sage. Piper. People on Facebook. Kathleen. And Amber.

Unlike Sage, I had met Amber several times. She was the second transplant at our center (I was first, a fact that was a bee in her bonnet for awhile. Cracked me up.). She was younger than me, around my brother’s age (she was born in 1986). She’d been diagnosed with CF the normal way—as a little kid—but she lived nearer the Toledo center so that’s where she got her CF treatment.

We were both writers—she wrote a book called Breathtaking about her experience—and we both went to small Ohio colleges. (She had started at Cedarville University, but couldn’t finish because she got too sick, and eventually graduated from Moody Bible College.) She had a husband and they had adopted a little boy named Noah. He started preschool this month.

Amber had been in rejection for about two years, but she was a force. I mean, I’d never met anyone who was so unapologetic about herself, her life, her goals. She just told you whatever she thought, right out. “You can’t say that to people!” I”d tell her.

“Why not?”

Eventually, some of this rubbed off on me in dealing with our doctors. Ha.

She was just so unapologetically her. Honest, open, passionate, feisty. You always knew what she thought. But she wasn’t mean. She was just open in a way that a lot of people aren’t.

For two years she’d been driving from her home in northwest Ohio to get treatments at The Resort, to try to keep herself alive. There was talk of listing her for a second transplant.

I last saw her in July, at clinic. Clinic days are Mondays and so generally you tend to see other pre and post transplant patients at the same time in the halls and labs and in outpatient radiology. We got to catch up a bit, which was nice, because we hadn’t in awhile. She was carrying around a portable oxygen tank (when I say portable, it really was—it could be slung over your shoulder like a purse), but she was still fiery. Still giving me crap for wearing a skirt to the doctor’s. :-p “Comfort!” She said. And she was right, but I told her I preferred to use my feminine wiles to make the doctors do what I want. I was kidding, and she knew it, and we laughed about it.

I had seen on Instagram that she had missed an outing with her son to the zoo on Labor Day. But I thought she was okay. I have a news feed filter on my facebook app—basically, i don’t see scrolling updates anymore—so I had completely missed that she had been admitted with pneumonia and they had bronched her and she was in the ICU while they figured out a long-term plan.

I messaged her on Wednesday, to ask her a question about treatment. It was my brother’s birthday.

I got from his birthday dinner that night to find a message from her husband—Amber had died on Monday morning.

*

I don’t know why I’m alive, still, and Sage and Amber aren’t. Part of it is the idea that their journey, what God wanted them to do with their lives, was “complete”, I guess. And I’m not done. Which, I mean, is fine, I like being alive. But why me? Why not them too? Why are their husbands widowers, why is Noah without a mom, why did George the dog never see Sage come home? Why? Why do my siblings get to have me, and their siblings don’t?

I don’t know. I know God knows, I know He has his reasons, but I don’t know how much that really helps right now.

In Amber’s case, she had almost fourteen extra years. Her transplant anniversary was September 25. In those fourteen years, she wrote her book, she traveled to speak, she got married, she adopted Noah. She had extra time that she never would’ve had other wise.

But she was still only 33. Sage got an extra year of life, she had a wonderful husband and family and the sweet pups and even sweeter nieces and nephews.

I’m older than both of them.

A lot of people, post transplant, experience the feeling that they need to live for their donor. That they’re sort of entrusted with continuing the donor’s life as well as their own.

I never really felt that—probably because my donor was older, so it wasn’t like another 23 year old had died. (I’m not denigrating my donor’s gift, obviously! OBVIOUSLY. Just trying to explain how I feel.)

But I do feel, now, like I’m living for them. Sometimes I know Sage wants me to do something, to be brave and to ride it out.

And now I’ll feel Amber yelling at me to be honest and tell them how I really feel and figure stuff out, dang it. To just do x.

Both Amber and Sage had strong faith. I know that they’re happy. (I mean, one has to be happy when beholding the beatific vision, right?)

But gosh, I miss them both.

Miracles (and suffering)

essaysEmily DeArdo1 Comment

(This might not make a lot of sense, but it’s something I’ve been thinking about this week, so I thought I’d share with you.)

How do you define a miracle?

Normally we use it in the sense of something extraordinary, out of the ordinary, that can’t be explained. Generally it’s a life-saving thing—a miraculous healing, a miraculous escape, a miraculous rescue.

And the other thing we tend to associate with miracles is perfection. The person is perfectly healed. The person is perfectly restored to life and health and family.

But is that true?

Jesus did a lot of miracles in the Bible. He still does them today. I know I’ve been the recipient of several.

But you know, Lazarus still had to die. So did the little girl.

I will die, eventually. So will you. So will your family.

(#LivingMementoMori, y’all! :) )

Sunset—no filter required—outside Orchard House.

Sunset—no filter required—outside Orchard House.


Miracles are great. Believe me, I believe in them, as the song says. I believe in them strongly. I pray for them.

But I’ve never had a miracle that fits the definitions above—the “perfect” part. I’ve received miracles, but there are other aspects of them too.

I’ve lost hearing. I almost lost my arm. And those things, in the grand scheme of things, are small, because I’m alive. But when I was sick, I didn’t ask God for perfection. I asked Him for life. I asked for the chance to keep on living.

(In order to get my CF diagnosis, we had to switch pediatricians, which happened because my old pediatrician died. The connection of all of us in the grand story is impossible to unravel. )

Some people don’t get that miracle. Why did I get it, and Sage didn’t? Why are some people healed, and not others?

But there are other kinds of miracles—miracles of grace. The miracle of acceptance, of fortitude, of grace and cheerfulness and continued life even in the face of darkness and doubt and despair.

A miracle doesn’t necessarily mean perfection. It doesn’t mean that we get exactly what we want when we want it, because God knows so much better than we do, which is crazy to think about. What good was achieved by Sage’s death? What good is achieved by so many of the losses, of the pain, of the darkness? What good is achieved when babies die and people commit suicide and people starve?

I don’t know. And neither do you.

God does, though.

God sent His own son to die for us. Every single one of us will face death, and we will face pain and loss of those we love and things we can’t live without.

We beg for miracles. That’s true. That’s right. God wants us to ask for them.

But…..sometimes the miracle isn’t the physical miracle.

You know, Mother Angelica once said she could go to heaven with a broken body, but she couldn’t get there with a broken soul. That’s true.

Pray for the miracles. Pray for God’s intervention. Ask, seek, knock, beg.

But remember that if God doesn’t give you what you want, it doesn’t mean that He didn’t hear you. It doesn’t mean that He’s smiting you. It doesn’t mean that you didn’t have enough faith. (That one gets me, big time. Mary’s baby boy died—and no one had more faith than she did!)

Be thankful for imperfect healing. Be thankful for imperfect life. Be thankful for acceptance.

And the thanks might come on the far side of a lot of yelling at God, or screaming, or almost despair. God I do not understand.

You’re not alone in that. The apostles didn’t understand either. We can’t understand.

What we need to cling to, though, is that in every situation, in all circumstances, God is with us.

This isn’t airy fairy talk. This is talk I know. I know even in the darkest moments, in that valley of death—the real one, actual, true death—God is there, even if I don’t feel Him, and there are times when I haven’t. It’s not like I’m always walking around in a cloud of Blessed Assurance, y’all.

Miracles are gifts to us. But we aren’t owed them. I didn’t do anything to “deserve” getting a second chance at life.

The psalmist says that God’s ways are mysterious. There’s no better place to see that than at the precipice between life and death.

The miracle you might need the most might not be the one you’re asking for.






St. Dominic, the Innkeeper, and Twenty-First Century Preaching

Catholicism, essays, politics, DominicansEmily DeArdoComment
El Greco,  St. Dominic in Prayer

El Greco, St. Dominic in Prayer

There’s a story about St. Dominic that’s familiar to every Dominican, and I think it has important implications for us today.

Here’s how the Nashville Dominicans tell the story on their website:

Two years later a diplomatic trip brought Dominic into the Albi region of Southern France. A strong zeal for the salvation of souls was enkindled when the young canon encountered an innkeeper who was steeped in the errors of the Catharists, a heresy which threatened the region. Although other religious had been commissioned to preach in the region, little progress had been made. After a long night of intense discussion, the light of truth prevailed and the innkeeper returned to the practice of the faith.


So let’s break this down. Think of a hotel. Imagine you’re in the lobby, getting something to drink before you go to bed, and you start making small talk with the desk clerk. You discover that he’s an agnostic.

You have a few options:

Don’t say anything. Just smile and say good night, but mentally pray for him.

Share that you’re Catholic. Don’t go any father.

Tell him that he’s going to Hell.

Say that you’re Catholic and spend the rest of the night trying to browbeat him into submission!


What did St. Dominic do? He talked to the innkeeper. All night. You can imagine that it wasn’t full of highly charged statements (like, hey, you’re going to Hell! Good night!) or polemics. It was probably logical—because we Dominicans love study—and it was probably methodical. And it was also probably gentle. I doubt the innkeeper would’ve stayed up all night if St. Dominic was banging him over the head with proofs!

There’s nothing wrong with a good discussion, including one that gets a little exciting.

My siblings and I are all half-Italian. When we have discussions, we get loud. We get boisterous. We use our hands! For people new to way we converse, you can think we’re arguing. (Growing up, our mother, who is not Italian, often told us to stop arguing. “We’re not arguing! We’re talking!”) St. Dominic was Spanish, so I wonder if he used his hands, too. Maybe!

But there’s a distinction between passionate arguing and getting personal. And on St. Dominic’s Feast Day, that’s what I want to talk about.

St. Dominic (detail) from “Christ Mocked with the Virgin and St. Dominic,” Fra Angelico

St. Dominic (detail) from “Christ Mocked with the Virgin and St. Dominic,” Fra Angelico


One of the mottos of the Dominican order is “Veritas”—truth. We love truth. We live to spread the truth of the Gospel all over the world! And that’s part of the reason we study, so that we can know what the truth is. Truth isn’t about what you think is true, or a “personal truth". (for example, children believe that Santa Claus, the Tooth Fairy, and the Easter Bunny exist. We could call that their “personal truths.” )

Truth is verifiable. Truth can be known. Sometimes, yes, there is mystery! We will never understand everything—and we’re not meant to. Some things are just beyond our reach on this earth. But we know the truth of faith because it’s able to be studied. It’s able to be seen. We believe in the truth of Jesus Christ. At Mass every week, we say the “credo”—”I believe”. This isn’t what just I believe, or what you believe, or what the pope beliefs, or what Fr. Patrick up on the altar believes. It’s what we have always believed, as a people, a family of faith.

If you are Catholic, you have to know what you believe, and why you believe it—and you have to assent to it. You can’t just say, well, that’s fine for you, but I don’t believe in Transubstantiation. (You would be….wrong!) I don’t believe in the Church’s definition of marriage. I don’t believe in Hell. Etc.

Truth is truth whether you believe in it or not. People believed the earth was flat—but it wasn’t. People believed that slaves weren’t people—but they were. People believe that unborn babies aren’t people—but they are. See how this goes?

It goes without saying that the truth needs to be spread far and wide. That’s part of what Dominicans do.

But, the question is “how to do it.” As the Wicked Witch of the West said, “These things must be handled delicately.” We can’t be too nice that we deny people the truth—because the truth sets them free, and truth is the best thing you can give someone! But we also can’t be so awful and hard-core that we turn people away from hearing the truth and listening to it.

Let’s take a story from the Bible. It’s one that’s familiar to everyone—the story of the woman caught in adultery. I’m going to quote it here, so we can all have it freshly before us:

John 8:3-11

The scribes and the Pharisees brought a woman who had been caught in adultery, and placing her in their midst they said to him, “Teacher, this woman has been caught in the act of adultery. Now in the law Moses commanded us to stone such. What do you say?” This they said to test him, that they might have some charge to bring against him. Jesus bent down and wrote with his finger on the ground. And as they continued to ask him, he stood up and said to them, “Let him who is without sin among you be the first to cast a stone at her.” And once more he bent down and wrote with his finger on the ground. But when they heard it, they went away, one by one, beginning with the eldest, and Jesus was left alone with the woman standing before him. Jesus looked up and said to her, “Woman, where are they? Has no one condemned you?” She said, “No one, Lord.” And Jesus said, “Neither do I condemn you; go, and do not sin again.”


Do not sin again. That’s the crux, really. We are all sinners. Every single one of us. I am, you are, everyone. None of us is without sin. But Jesus doesn’t say to the woman, “Oh, what you did is fine. Go ahead, go home, it’s all good.” He said, I don’t condemn you. But don’t sin again. That’s what happens when we go to confession—we have to promise to try not to sin again. We can’t just think, oh, I can do what I want, because confession!

Jesus loves us more than we can possibly imagine. And because he does, he doesn’t want us to keep messing up. It makes him sad! Do parents like it when their kids make bad choices? No! But are they angry? Maybe. Are they disappointed and sad? I think this is probably more likely. (I mean, they might be angry at first. But I think then it becomes more sad/disappointed.)

When we discuss heated issues in the twenty-first century, we are not good about being gentle about it, like Jesus is here. Now, yes, Jesus also turned over tables in the temple. Sometimes we can be righteously angry. I get righteously angry whenever I talk about disabilities or abortion. That’s my thing. But if I slip and start calling people names, or want to incite violence against them, I am sinning.

We can be preachers of the word. We have to be, both preachers of the word and doers of it. We have to live the life of Christ. Sometimes that means standing up for people. Sometimes that means living a quiet life of witness. Sometimes it means both!

If you want to make your point, if you want to convert people, you aren’t going to do it, usually, by violence or hatred or name calling. We need to stop doing that. We need to do it like St. Dominic did it—gently, with facts, with truth, and then….step back. See how it goes. Conversions aren’t instantaneously. St. Dominic famously cried, “Oh Lord, what will become of sinners?” He cared about them. He didn’t just want to score a point like in a college debate match. He didn’t want to just win. He wanted the other person to see the truth because it would save them.

Politics in America has always been nasty (see the Election of 1800!). But we must stop seeing each other as enemies across a divide. We have to state our position, but also realize that we can be friends with people who don’t vote the way we do. In fact, we are required to love them.

I know things get heated in the public realm. I worked in politics for 10 years. I saw it, up close and personal. We cannot want to kill our opponents, guys. We can’t approve the shooting of congressmen and women because the victim disagreed with us! What kind of people will we be then?

A story was told to me by the first legislative aide I worked with, who had been in the senate a long time. She said that senators used to argue like crazy on the floor, and then go out to dinner together. They were friends with each other. That was becoming rarer and rarer

Christianity isn’t a religion for wimps. Jesus doesn’t ask us to be a doormat. He asks us—and St. Dominic shows us how—to preach the truth, to live the truth with our lives, to pray for our enemies. We can have discussions—even loud Italian ones! We can be passionate! I’ve always been passionate when talking about the Church.

But there’s a fine line between being passionate, and being so whipped up into a frenzy that you can’t see the human being on the other side.

St. Dominic saw the humanity in the people he met. That’s what drove him to preach—his concern for them and his love for Christ.

Does the same thing compel us?




Trust, Courage, Faith, and Transplants

Catholicism, essays, transplantEmily DeArdo1 Comment
Courage, daughter! Your faith has saved you. --Matthew 9_22.png

I had a holy hour last week before Mass, and as I was paging through my Magnificat, I noticed a few things.

Do you see them, too?


Matthew 9:1-8

The Healing of a Paralytic. He entered a boat, made the crossing, and came into his own town. And there people brought to him a paralytic lying on a stretcher. When Jesus saw their faith, he said to the paralytic, “Courage, child, your sins are forgiven.” At that, some of the scribes said to themselves, “This man is blaspheming.” Jesus knew what they were thinking, and said, “Why do you harbor evil thoughts? Which is easier, to say, ‘Your sins are forgiven,’ or to say, ‘Rise and walk’? But that you may know that the Son of Man has authority on earth to forgive sins”—he then said to the paralytic, “Rise, pick up your stretcher, and go home.” He rose and went home. When the crowds saw this they were struck with awe and glorified God who had given such authority to human beings.


And here….

Matthew 9:18-26

The Official’s Daughter and the Woman with a Hemorrhage. While he was saying these things to them, an official came forward, knelt down before him, and said, “My daughter has just died. But come, lay your hand on her, and she will live.” Jesus rose and followed him, and so did his disciples.  A woman suffering hemorrhages for twelve years came up behind him and touched the tassel on his cloak.  She said to herself, “If only I can touch his cloak, I shall be cured.”  Jesus turned around and saw her, and said, “Courage, daughter! Your faith has saved you.” And from that hour the woman was cured.

 When Jesus arrived at the official’s house and saw the flute players and the crowd who were making a commotion,  he said, “Go away! The girl is not dead but sleeping.” And they ridiculed him. When the crowd was put out, he came and took her by the hand, and the little girl arose.  And news of this spread throughout all that land.


Do you see it?

Before Jesus heals these people, he tells them to have courage.

A lot of people tell me I am brave.

I am not brave.

Doing what you have to do to keep on breathing is not brave. It’s necessary. Now, granted, I had to make the choice to go for transplant. If I hadn’t done that, then I wouldn’t be sitting here, writing this, precisely fourteen years later. In fact, as I write this (at 10:47 a.m.), fourteen years ago, I was in the OR. My surgery began around 6:45 in the morning (at least that’s when the epidural started, I think). So, yes, I made the decision to go for transplant. Was that brave? I don’t know. I don’t personally think so.

Really, though, a lot of the time, I did not feel brave. I did not have the courage Jesus is telling these people to have.

But as I looked at these verses, I thought, this is right. They need courage for what’s about to happen. Because it’s scary, to be suddenly plunged into a world you didn’t think was possible, something you had hoped for, but didn’t think would actually happen. It’s sort of terrifying.

These people had faith that Jesus could cure them. And I had faith, too. I’ve always had it. I’ve never doubted my faith. But did I have courage? Did I trust Jesus?

Ah. That’s the slow growing bloom of faith. Faith is the seed. But courage and trust? That’s later. That’s a result. It’s the result of a lot of dark nights and lots of tears and feelings of this is never going to happen.

And I can say that even if I hadn’t been transplanted. Remember, God is always good. I would’ve been cured, either in heaven, or here on earth. And I was lucky that I got my miracle here. Some people aren’t as lucky as I was. That’s the sobering fact.

Throughout, though, Jesus tells us to have courage, because something is happening. And it might be something great. But in the moment, there is fear. There is death, as we see with the little girl. But then…

life.

Even if it’s life on the other side of death. We know how this story ends. We know that death is not the winner.

Trust in Jesus sounds great, and it is great, but until you’ve really had to surrender your will, to say I have no control over this—that’s when you need the courage. It takes courage to trust in God.

Jesus knew that. And I think that’s why he tells these people to have it, to grasp it, to be strong in the moment. Because in the moment when the miracle happens, you might feel like you’re going to drown—save me, Lord, I’m perishing!

If I look brave, it’s really because Jesus gives me the courage to take the steps forward. It’s not my courage at all. It’s his.

My Dominican saint is Bl. Lucy of Narni—and yes, she’s the one C.S. Lewis used as inspiration for both the name “Narnia” and Lucy Pevensie. I’ve always loved Lucy. But remember, Aslan tells Lucy, “Courage, dear heart.”

We need to be reminded to have courage, to keep trusting.


Thomas More.png





A Wedding In the Mountains: Melanie and Jason

essays, family, travelEmily DeArdo1 Comment
64389880_10156661101323089_923952670593515520_o.jpg
64618660_10156661101413089_5427153012034371584_o.jpg

(Photos by Mel’s photographer, not me! :) )

My sister got married last week, and I have a new brother!

We’re excited about this. :)


The wedding was on June 13 at Our Lady of the Mountains Catholic Church.

This is a beautiful church! Pope St. John Paul II visited it during World Youth Day in Denver in 1993.

IMG_9155.JPG
IMG_9176.JPG
IMG_9177.JPG

The church was stunning……so here are pictures (especially for family members who couldn’t come, but really, for everyone, because we all need beauty!)

St. Francis with Brother Elk. I saw quite a few people coming to pray here while we were there. It seems like a really popular devotional spot in Estes Park!

St. Francis with Brother Elk. I saw quite a few people coming to pray here while we were there. It seems like a really popular devotional spot in Estes Park!

Isn’t she gorgeous?!

Isn’t she gorgeous?!

The stained glass windows around the nave showcased the sacraments. Thought this one was especially appropriate!

The stained glass windows around the nave showcased the sacraments. Thought this one was especially appropriate!

The altar and tabernacle—the tabernacle has the five loaves and two fishes on it.

The altar and tabernacle—the tabernacle has the five loaves and two fishes on it.

View from the doors

View from the doors


It’s a really gorgeous church, with a statue of the Sacred Heart, a St. Michael window in the choir loft, and last but not least, a really amazing priest! He gave a beautiful homily on how marriage is about joy and sorrow, how marriage really begins the time you have your first fight (basically) or have a bad/sad moment, and how marriage is about being selfless, instead of selfish, because you’re one now. You’re not two. It was appropriate he spoke about joy, because that’s my sister’s middle name! I wish I had a copy of the homily, it was so inspiring.

The reception was intimate, held at a local steakhouse. But there was still cake (well, cupcake) smashing….

IMG_9216.JPG
IMG_9219.JPG
IMG_9221.JPG


And a first dance….



IMG_9222.JPG

I was a bridesmaid, so I was busy throughout the day and didn’t have time to take a ton of pictures, but that’s what I have. :)

We stayed at The Stanley Hotel (AKA, where Stephen King got the inspiration for The Shining) and my room had a great view:

IMG_9146.JPG

So, that’s all I have right now, in terms of photos, but it was a lovely, intimate wedding in a gorgeous place, and I’m so happy for my sister and my new brother in law! :)


Joy In the Morning (OR: How I get up every day and do life)

CF, essays, transplantEmily DeArdo2 Comments
My siblings and I on my brother’s wedding day.

My siblings and I on my brother’s wedding day.

Warning: This might be a sort of rambly post. Settle in.

I was visiting my therapist last week. Yes, I see a therapist. I have since I was 17. A lot of people with CF do (not all, but a lot). I have no shame in telling you that.

So anyway, I was at an appointment with my therapist, and we were talking about how I was a bit maxed out on doctor visits. I mean, in almost thirty-seven years of life, I think my quota’s been hit, right?

And that doesn’t even count the other “stuff” we do—Mom accessing my port every month, the meds I take (which are vastly less than pre-transplant, btw), the blood glucose tests I’m doing twice a day now, etc. It’s a lot. It’s less than pre-transplant in some ways, and more in others. I have a colonoscopy every five years, which means one next year. I have a mammogram in April, because my mom had breast cancer and so my sister and I have to start our mammograms at age 37 (ten years before Mom was diagnosed). And then there’s dentists and eye doctors and the things normal people do.

So, yeah, it’s a lot.

This led to talking about compliance, which means, doing what the doctors tell you to do. And I told a story that I thought was illustrative.

When I was about seventeen, I was having a regular clinic visit, an I saw a sign on the wall of the exam room, saying that if you were 95% compliant with taking pulmozyme (one of the CF meds), you’d get a prize at your next clinic visit, see your nurse for a chart to win! Stuff like that.

Now, I never did these, because, generally, I was too old. This stuff was generally for the smaller kids, to get them in the habit. But what I thought was interesting was that the center wasn’t pushing perfect compliance.

Because that doesn’t exist.

Now, look, I’m not saying I was a slacker. Because I wasn’t. My mom, for one, wouldn’t let me be, even if I was disposed that way. I take my meds. I did my treatments. But yes, sometimes there were times where I put in a few minutes of precious sleep over a “perfect” Vest treatment, when I was in college. Sometimes I just went to bed. Not often, but sometimes. I wasn’t “perfect”, and I’m not perfect now. To be “perfect” now, I’d be a MESS. I’d be taking meds all day long, worrying about timings and if this was going to interact with that and how does this work and oh my gosh my brain is going to explode!

I take all my meds, and I take them twice a day. Is that perfect? Well, no. It’s not optimal. If can affect absorptions. *

But here’s the thing—I want a life. I don’t want to live in a glass bubble.

I went to school. I did activities. I rode bikes with my friends and went to the pool in the summer with them and then we went to the coffee shop and played board games. I had sleep overs, where I didn’t bring my equipment! I went on choir tour! (And yes, I brought the mini nebulizer!) I went to college.

Honestly, if my parents had tried to wrap me up in the bubble, I would’ve had a fit. I always wanted to be like everyone else, as much as possible. As Erin once said in a Home Town episode, I’m like a wild pony, and I need freedom!

(Not too much freedom. But enough freedom.)

So anyway, talking about all the things I had to do every day, my therapist then said, well, how do you do it? I mean, what gets you up in the morning?

And then I said, “well, that’s sort of what my book is about.” (Because it sort of is. Sort of. The book is sort of about a lot of things! )

But here’s what it comes down to:

Yes, there are a lot of things I have to do in my life. More than the average bear, that’s for sure, so when people say “well, you just have to suck it up and do X,” I want to roll my eyes, because that’s a big chunk of my day. (I’d wager it’s a large part of everyone’s day. As my grandfather used to say, “that’s why they call it work!”) But yeah, for me, and for other people like me, we have a lot of stuff on a daily basis that isn’t fun but must be done, and you just do it and don’t whine about it.

But what gets me up in the morning? Well, a lot of things. I’m very in touch with my inner child and I get excited about really little things. When I was working in the Senate, a lunch date with my Dad was enough to make me excited for the day. Today, it’s stuff like, a package is coming in the mail! It’s a hockey night in Pittsburgh! I get to write today! Oh, this book comes out! My book is in at the library! Chuy’s with Mary!

I’m very easily amused. And that helps me, I think, because it overrides a lot of other things that are not so fun. (Like making myself go to the gym. And poking my fingers. And doing doctor paperwork.)

But a big part of this, and this is what I’d say to anyone facing a chronic illness, is this:

Go live your life!

You really, really, really cannot hole up in your house and be all sheltered. You can’t. GO LIVE YOUR LIFE. Go outside! Do things! Be free! Have fun! Go to the park! Go swimming! Pet a dog! Whatever!

Yes, treatments are vital. YES, compliance is important—if I hadn’t been a compliant patient I NEVER would’ve been listed for transplant! But if you’re caught up in PERFECT, then…..you’re going to miss things and your life will be so small.

9E6C0672-E46C-4144-896F-A1F4855E57A1.jpg

Seriously. Do what the sign says.

Live your life. Take your brain with you.

*: As far as absorptions: the only meds I take that NEED to be taken around the same time every day are my immunosuppressants (the prograf). That’s important. However, I am also far enough out that if I’m off by a few hours in a dose, the world will not end. When I traveled to LA, my nurses told me to just take the meds on LA time and not worry about being exact. I used to take my meds exactly at 8 AM and 8 PM (even rushing to the lobby of the Ohio Theater to take meds before a symphony concert started). Now, it’s generally around those times. I’m not quite as OCD.

The meds I’m talking about here are things like my nexium and magnesium supplements. You’re not, really, supposed to take them together. But if I didn’t, then I’d be carrying around meds all day and thinking about when to take them, as opposed to thinking about things more worthy of my brain space! It’s not a huge deal to take them together. But yes, some meds do have to be taken at certain times, and when I do those (like home IVs) then, yes, it’s on the dot as much as possible. You usually have about an hour leeway on either side of the dose time (for example, if the dose is due at 6 PM, you can do it at 5 or 7, but not 4 or 8.)








Orchard House

essays, Orchard HouseEmily DeArdo1 Comment
3D0C6A97-5AD0-48AA-8C15-7B54A5726192.jpg
IMG_8493.JPG
IMG_8513.JPG
IMG_8516.JPG
IMG_8499.JPG

I’ve decided to call the new place Orchard House, for a few reasons.

One, Little Women was the first “adult” book I read, back in third grade, and it’s always resonated with me, in various stages. As a kid, I liked Amy, because she looked like me (the blonde). Of course I evolved into Jo, the writer; Beth, the one who stayed behind, was also relevant for a lot of my life, although I’ve never been that sweet, and she played piano, which I do (sort of—I’m self-taught). Meg, the oldest, has also had resonance over the years.

Also, Orchard House was a cozy place of creation—the girls were always making something—but it was a home. Sort of idealized, yes, but a comfortably, cozy, safe place. Who doesn’t like that idea?

And of course, there will be lots of writing happening here. So I’ll be channeling Jo in her attic room. Although my room isn’t an attic and it’s a bit nicer.

I  love  my desk!

I love my desk!


So, a snapshot of the new place, and it’s name. More decorating photos to come, but I wanted to introduce you!

The Week of Everything

essaysEmily DeArdoComment
A gorgeous rose from the bouquet my brother and sister in law sent me, celebrating the book!

A gorgeous rose from the bouquet my brother and sister in law sent me, celebrating the book!

This is the week of everything.

I’ve started writing the book.

I will sign the contract this week.

I’m moving.

Yup, it’s a lot.

But in the midst of all this good stress (and it is good stress), I’m really thankful for my body.

And that’s weird for me to say, because normally, my body and I are at odds. It’s not perfect, by any standard. And it never will be. It’s always going to be ‘Healthy for me’, which is not healthy for anyone else, generally.

But right now, it’s able to take out big bags of trash, and go under beds and cabinets, and pack boxes, and clean toilets. It’s slow going, because my knee never really recovered from the meds last fall, which messed it up, and I still only have 54% lung function (which is so much better than 19%, don’t get me wrong!), so I don’t work as quickly as someone else might.

But my body can do these things. And I’m really grateful for that. It can do these physical tasks, and I can type these words.

So even though it’s the week of Everything, and I’m running around like a crazy person, I’m glad I can run around like a crazy person.

No yarn along this week, and no quick takes, because it’s The Week of Everything!

But next week, maybe a tour of the new place?

Listen Up! (For World Hearing Day)

essays, health, hearing lossEmily DeArdoComment
(c) Wikipedia

(c) Wikipedia

World Hearing Day was yesterday, and so I thought I’d put up links to the post I wrote last year, about my CI and how it works and ways people can make hearing better for everyone!

So if you missed them the first time:

Part I: How I lost my hearing

Part II: How the Cochlear Implant Works

Part III: Living with a CI

Part IV: Accommodations, i.e., the post that you should read even if you don’t read any of the others!


I am (hopefully!) getting my CI upgraded in the next few months. The current processor I have has been “obsoleted”, meaning that if it breaks, Cochlear (the company who makes my processor) won’t fix it, they won’t sell any more replacement parts for it, etc. Now, they do this, in part, so that insurance companies will pay for new processors, because if it can’t be fixed anymore, then, yeah. Probably need an upgrade. This one should be better and allow me to hear more, but I have no idea until I get it. :) I do know that it will have bluetooth capability so it can stream my iPhone sound directly into my processor, and this might be a big thing. We’ll see what happens and I’ll let you know!

And thinking about my CI is timely because of a conversation I had in a lung transplant group on facebook. We were talking about the toxicity of a certain class of meds, and that they are crazy hard on the body. Some people were adamant that they would never take a drug in that class.

But here’s the thing—all meds are toxic at some point. They just are. Tylenol is! I knew that the ototoxic drugs were destroying my hearing. But I decided I’d rather be alive, than dead with great hearing. It’s about choices. And sometimes, yes, you just have to cut out a class of drugs. The meds I took over the fall for a sinus infection have pretty much messed up my right knee permanently. I’m not really happy about that. But you know, I like being alive, I like that we managed to stop the infection without it 1) getting into my lungs and 2) requiring the big guns of IV meds and /or hospitalization.

It’s a trade off.



Got $20? You can feed a child for an entire YEAR!

Catholicism, essays, LentEmily DeArdoComment

I am a BIG fan of Mary’s Meals, and you should be, too! Let me tell you why.

(Also, SUPER cute video at the bottom!)

One of the Mary’s Meals t-shirts I picked up at the Columbus Catholic Women’s Conference last weekend.

One of the Mary’s Meals t-shirts I picked up at the Columbus Catholic Women’s Conference last weekend.

As we approach Lent, people start to think about Lenten penances, and the pillars of Lent: Almsgiving, Fasting, and Prayer. We should think about these things all year, of course, but especially during Lent, when we prepare for Christ’s Death and we imitate His 40 days in the desert.

It’s sobering to think about people who do not have enough to eat, who are truly starving. Not just “food insecure”, but really, truly, starving. People who will not eat on a daily basis. According to World Vision, one in eight people in the developing world do not have enough to eat.

Mary’s Meals has a simple idea: One nutritious meal every day for a child in a place of education.

Children who are hungry can’t learn. That seems obvious, right? You can’t think if you’re starving.

64 MILLION children around the world who are hungry can’t attend school—they have to beg for their food instead.

Mary’s Meals wants to stop that—they want to help children LEARN and be fed.

So, in 18 country around the world, they set up food serving stations at schools, run by local volunteers, who feed the children a nutritious meal every school day. In some places, it’s an actual school. In others, like in India, it’s “non-formal education centers”, like railway platforms, where kids learn and eat. In Madagascar, they actually feed children in prison, because in the prisons, the food service isn’t consistent. The kids learn and get fed.

Feeding one child for an entire school year costs $19.50.

That’s it! $20 feeds a child who otherwise wouldn’t eat. And when they eat, they are better equipped to learn, and as they learn, they can get out of poverty, get a job, and help themselves and their families break the cycle of crushing poverty.

Currently, Mary’s Meals is feeding more than one million children around the world! Which is amazing, but there is still more work to be done.

Magnus McFarlane-Barrow, the founder and CEO of Mary’s Meals, spoke at the conference last weekend, and he is passionate about feeing these children, about making a difference, and it’s so simple to do. This isn’t a hard thing. They will do anything to get these kids food; in Haiti, they deliver food to the foot of a mountain and carry the food up to the school settlement! Even though Mary’s Meals is dedicated to Mary, the Mother of God, and Magnus is Catholic, the schools serves everyone, not just religious schools.

This Lent, I think it’s a great idea to support Mary’s Meals however you can. Maybe you eat a simple meal and save the money you would’ve spent on going out—do that once a week, and at the end, give the money to Mary’s Meals. Maybe you can hold a bake sale or a fundraiser at your school. There are lots of ways to help!

Donate right here. Think about it. $20—a movie ticket and a soda, or an entree at a nice restaurant—that can feed a kid for an entire year. That makes a huge difference in a child’s life.

To find out more, watch Child 31, the documentary about Mary’s Meals:

And the follow-up, Generation Hope:




And if you like the actor Gerard Butler, like I do (he was in The Phantom of the Opera!), then you’ll love this video of him directing kids in Haiti at a Mary’s Meals school!












Be Like Briony! (Or: Disability and Reality TV)

essaysEmily DeArdoComment

So, I love the Great British Bake Off. Do you? :)

(For those of you who have no idea what it is: 12 bakers in Britain bake three challenges every week—two they can practice, one they can’t—they don’t even know what it is. The bakes cover pies (their pies, not American pies), cookies (biscuits in England), bread, patisserie, all sorts of things. At the end of each week, one person is “Star Baker” and one person is sent home.)


Anyway, I was watching the 2018 Bake Off on Netflix over the weekend, and I was super happy to see Briony, one of the contestants, on the show. Why? Well, first, she’s just great, but second, because she has a disability and she didn’t make hay about it!

She has what she calls a “little hand”—it’s a birth defect where she only has six fingers:

Explaining why she and Channel 4 chose not to mention what she has dubbed her “little hand”, the 33-year-old said: "I specified early on that I didn’t want them to make a big deal out of it because I just wanted to see how people would view it".

Williams went on to say that her disability is “a part of me, not all of me” before adding: “It’s not that I’m embarrassed about it or ashamed of it in any way. I want to be there on my own merit and I don’t want people to think that I’m getting special treatment.

Think about this. BAKING! With six fingers!

But what I love is that it’s never mentioned on the show. Never. She just bakes. She doesn’t use special equipment, there aren’t any “special moments” where she has a tender music fueled close-up where she talks about “overcoming”. She just does her stuff! And it’s great stuff!

When I was on Jeopardy! I didn’t really want to talk about my transplant. But….I did. Because that was the most “interesting” thing about me, apparently (eye roll). And they did make accommodation for me—but I didn’t ask for it—they did it in the interest of fairness, because they wanted to be scrupulously fair. So there weren’t any video categories for my game, or any music clues (even thought I might have done OK with that!).

The reason I like this so much is because I HATE a lot of reality TV—especially the talent/singing shows, where the singer comes up and does her bit and then spiels all about her issues.

Look. THIS DRIVES ME NUTS. I have always wanted to be judged solely on my abilities. I would never enter a contest and then pay the pity card. EVER. I didn’t do it for Jeopardy!, I don’t do it when I audition for shows, I don’t do it, period. Because I don’t want to get pity. I want to get respect for what I can do. So when I see people talking about how “Oh, this person with X was crowned Homecoming Queen!” or “this person with Y is on X Factor!” I want to scream. Because it makes it sound like that person only did these things because of pity. Not because of their excellence, their human qualities, their goodness, etc., but they become like side shows. “Oh, look, this person can be like anyone else!” these shows croon. Whereas Briony (and I hope, me) just go out and do it. We don’t have to draw attention to it. It just is. Not everything has to be a Special Inspirational Story of the Day!

Briony is my sort of person. She has an issue, yeah. But I mean, it’s not her whole identity. I’ll tell you I’m hearing impaired. Blog readers know it. But if you met me in actual life, you might not know. The people on Jeopardy! didn’t know until I told them. That’s how I like it. If I need accommodation, I’ll tell you. But I want to be judged on my merits, not on the pity you feel for me. I do not want pity votes.

Briony got on the show because she’s a kick butt baker. And that’s what matters!

Vulnerability and Community

essaysEmily DeArdoComment
Jules Adolphe Breton,  The Song of the Lark

Jules Adolphe Breton, The Song of the Lark

I am really, really bad at being vulnerable.

Meaning: I don’t like to ask people for help. I’m terrible at it, really.

I have the sneaking suspicion that a lot of women are the same way.

But lately I’ve been thinking about this: we need each other. We need community. As so many things do it reminds me of In This House of Brede, where Lady Abbess tells Philippa, “You need the community,” when Philippa is trying to pray for something on her own.

We need community.

So why don’t we ask for it?

Are we embarrassed? Our house is a mess. I don’t want anyone to think that I can’t do it myself. Etc.
Are we afraid that people won’t help us?
Are we afraid that people will judge us? Oh, I was at so and so’s house yesterday and OH MY GOSH…..

I don’t know about you, but I’m honored to help people. I like helping people.

I don’t care what your house looks like. I’m coming to see you, not photograph your house for Architectural Digest.

What do you need? Do you need someone to grocery shop for you because the kids are sick and you can’t get out? Do you need someone to watch the baby while you shower? Are you just overwhelmed and you need someone to vacuum while you start the dishwasher so you can feel like you’re making some progress in your life? Do you need someone to listen, and pray for you?

Community should do all those things.

In 2001, I was in the ICU for two weeks, and in the hospital for a little over a month, total. I came home in time for Thanksgiving. My brother was with the band, performing in the Macy’s parade—a bigger event than usual that year, since it was right after 9/11, and each band member marched in honor of someone who died that day. Since Bryan was gone, and Thanksgiving was never a big deal in my family, we were just going to watch the band and have something heated up from the freezer.

But while the parade was on, a woman came to the door from our church. She brought us a Thanksgiving dinner. She knew that, since I’d just been released from the hospital a few days ago, Mom probably hadn’t bought the ingredients, we probably weren’t planning on cooking. So our church friends gathered around and brought us the meal.

That’s community.

It doesn’t matter if someone is having their first, fifth, ninth, fourteenth baby. We should bring them meals. We should rejoice in this new life.

We should want to cultivate relationships that allow for vulnerability, for people to feel safe asking for help.

Do you feel safe, asking your friends to help you? I hope so.

I wasn’t planning on writing this, but it seems important to me, now more than ever, maybe, to want to encourage this. Step in, step up, and be community for each other. Help each other out, whether it’s just listening over a pizza or a cup of coffee, or sending a card, or helping someone with their dishes and vacuuming when they’ve had a rough week, or holding the baby so mom can get clean for the first time in a week.

As Christians, we’re supposed to love one another. Part of love is service. Let’s not be afraid to be vulnerable, and to be community for each other.

Burdens

essays, family, life issuesEmily DeArdo1 Comment

Kelly at This Ain’t The Lyceum wrote a great piece about how everyone is a burden to someone at some point in her life. It’s not just people who are disabled, or poor, or old, or whatever. ALL of us were, or will be, a “burden” to someone.

IMG_8219.JPG

One of the things you hear when people talk about assisted suicide is that they don’t “want to be a burden” to their loved ones. But think about it. Babies are inherently a burden to their parents. They can’t do anything for themselves. We all started there, and we’ll probably all go back there as we get older.

This touched me specially because I had a call with a “disability caseworker” last week, and I’m working through the SSDI application process. This entire process is dehumanizing and humiliating. It boils down to what you can do, and strips away anything else. So at the end of this call, which involved both my parents, I burst into tears.


“Why are you crying?!” My parents asked.

“Because these things are so humiliating. I feel like such a burden to everyone, I can’t do anything, you guys are just stuck with me forever! No one wants me!”

“We want you,” my parents said.

And then they reminded me that they really did want me. This wasn’t just parents saying what they’re supposed to say (like when you ask your boyfriend if a dress makes you look fat. There’s a right answer to that question.).

My parents really wanted me. They prayed hard for me. They got married in 1979 and I didn’t appear until 1982. My mom always wanted to be a mother. They prayed hard for me, and, in an example of God taking people seriously, Mom had said in her prayers that she would take a baby who needed extra care, because she knew she could love and take care of that baby.

And believe me, she has. The things my parents have done for me would take a really long time to explain, but here’s just a bit of it:

  • Many, many, MANY ER runs (One during the Super Bowl, when the Steelers were playing. My parents are huge Steeler fans.)

  • Monthly blood draws when I was a toddler.

  • Driving to Cleveland in a snowstorm for an appointment.

  • Many many many overnight hospital stays

  • Learning how to reconstitute medicines and give them via an IV, even 8 or twelve hours—yeah, that means middle of the night stuff. WHEEEE!

  • Beating on my chest twice a day, every day, as part of daily CF therapy (now that’s not really needed, there are inventions that take care of it, but back then, not so much).

  • Many insurance phone calls

  • Learning how to dress a third degree burn, and then doing the dressing at the kitchen table, which was just par for the course at our house.


It’s a lot. And I’d be lying if I said I never felt like a burden to them, because I do. Our society makes it clear of what it thinks about “people like me”. I’ve had people tell me, to my face, that I shouldn’t exist. That’s sort of hard to deal with. And as I get older, I get increasingly sadder about this fact that I’m not married, so my parents have to handle everything for me, because I don’t have a husband to help out. (Not that every husband would help out….)

But really, Kelly’s right—we’re all burdens. We just are, it’s part of being human. We depend on each other. Think about it. Even a “normal” kid needs mom and dad’s helps. Even “normal” adults need help every once in awhile. We can’t do everything ourselves, it’s just not possible.

But we see this as being wrong, and as something that needs eliminated. Sure, we all want to be independent. I am very glad, for example, that I can use the bathroom by myself, because having gone through periods of my life where I’ve had to wait for a bedpan or three nurses to help me, I do not take that ability for granted. But you know, there are times when I haven’t been able to do that, when mom has had to wash my hair, or Dad has had to call AAA because I can’t call them.

It can be a lot. It can be humiliating, and it can be depressing. As a society, we need to really focus on the person, because we are all God’s chosen people, in that, God willed us into existence. This is my existence.

I’m glad that I am independent, in some ways. I’m glad that I don’t need to rely on my parents for everything. But at the same time, I know that even when I have needed that, they’ve answered. And I know some parents don’t—I don’t know them personally, but I’ve seen them, I’ve heard the horror stories. I’m lucky.

People are people to be loved, not to be called burdens or dismissed because of it. Really, we could all be burdens to God. Think about how slow we are. I mean, doesn’t he ever sit up there and just facepalm? Seriously, humanity?! WE COVERED THIS!!!!!

But God made us anyway. People love us anyway. Our worth isn’t about what we can do or what job we have or anything external. Worth is internal.




Re-set for Advent

Catholicism, essays, journalEmily DeArdoComment

Does this week seem weird to anyone else? Like, there’s all this extra time? I’m so used to going right from Thanksgiving into December that this week has been throwing me off. Don’t get me wrong, I like the extra time, but it means that everything is being done early chez moi. For example, I usually send out my Christmas cards after Thanksgiving—I actually mail them on Thanksgiving, usually—so having them arrive at places before December 1 hits is just weird this year.

Decorations at my  parents’ house—this is the front hall.

Decorations at my parents’ house—this is the front hall.

My shopping is done. I’m mailing out the gifts that need mailed and the things that need wrapped need wrapped. I’m not a great wrapper so I tend to delay it for as long as possible. :)

Thanksgiving was quiet, which was nice, because Christmas is nuts in my family. We have our big family reunion two days after Christmas, and then I’ve got friends coming home for the holidays so I want to spend time with them, and it’s just a big joyful crazy time, which I love.

With the “extra'“ time this week, I’ve been doing a bit of a reset. I read about reset days here (yes, it’s a guys’ website, but it’s good info!), and on Monday, I decided to do this. Being knocked out for two weeks because of Crazy Med made me lose a lot of time in November and I’m still not completely caught up on things like housekeeping and my NaNo novel but it’s all good.

So I used the “reset” day to reset before Advent (I like how that rhymes, too). Cleaning the house is part of it, but also getting ready for Advent—decorating the house, putting out the wreath, things like that. Making a big to-do list was really helpful.

An ornament I made in 8th grade art class.

An ornament I made in 8th grade art class.

I love Advent. I love the sense of preparation, and December is really the only time of the year that I like snow. Every other time it’s sort of meh. (That’s putting it mildly)

But I like the New Year aspect of Advent, too, because it is the new year for us, and I like the freshness, the starting over, the hope that comes in Advent.

So if you need a reset day too, you’re not alone. Let’s get ready for a new year, a fresh start, and the coming of the Baby Jesus!