Remembering Those Who Have Gone Before Us

Bible reading next to Emily’s grave.

1 Therefore, since we are surrounded by such a great cloud of witnesses, let us throw off everything that hinders and the sin that so easily entangles. And let us run with perseverance the race marked out for us, 2 fixing our eyes on Jesus, the pioneer and perfecter of faith. For the joy set before him he endured the cross, scorning its shame, and sat down at the right hand of the throne of God. 3 Consider him who endured such opposition from sinners, so that you will not grow weary and lose heart.

Hebrews 12:1-3

November 1st and 2nd are for All Saints’ Day and All Souls’ Day celebration in the Catholic tradition (learn more). These are days set aside to thank the Lord for the saints who spread His amazing gospel that has echoed through time until now as well as loved ones who have passed into eternity. It’s a time a remembrance and thanksgiving. Write a list out of the names of all those who have gone before you and brought you to Christ or made you stronger in Him.

This time is also a time where people take their own mortality into consideration. Last year on this same day, Emily wrote her last entry about this important time for Catholics, not knowing that she would join those she loved and cherished that had gone before her. She had prepared herself for so long and really believed in the fact that “this world’s our ship and not our home” (St. Therese).

Please take a moment to read her words from last year to understand a bit more about these celebrations and maybe consider getting her book, Living Memento Mori, as well since it’s a great book on life, death, and self reflection.

To end this, here is a short excerpt from a song called “Death Be Not Proud” by a band called Attalus that really sums up how we all should look at death in the reality of the work Christ completed on the cross for us. The work that all those before us, including Emily herself, believed so completely in and shared boldly (may we all obtain such courage for the sake of other’s coming to the faith). We don’t have to be afraid of our end here on earth when we have confidence in what lies ahead in our eternity.

“Dates on a stone
Oh, they're just an alibi
A simple line
It can't sum up my life
Beneath the tears
The wreaths, the letters, and the roses
God composes a new life
As the old one decomposes

So come on death, I've got your dues
Take them any way you choose
And shake the heavens with your smile
If my bones are worth your while
But this coffin's just a womb
Thanks to the cross and empty tomb
My God will get the final laugh
Death, here He comes - your epitaph!”

And finally, a bonus throwback photo of Emily and her siblings during Halloween in the 90s!

A throwback photo of Emily and her siblings during Halloween in the 90s with costumes on.

"Our human rights derive from our humanity"

While in Houston, I (of course) went to church with my cousin and her family, and heard an amazing homily, centered on the decision in the Dobbs case. I took so many notes I thought I’d share them with you. It was a long homily, so this is just a taste.

Rogier van der Weyden, The Magdalene Reading. The National Gallery, London.

“The government does not and cannot give us rights. Our human rights do not come from the US government, our human rights derive from our humanity, and derive from the fact that we are human….{The Declaration of Independence states that] We hold these truths to be self-evident. We are endowed with those rights by our Creator and these rights are inalienable…

“To enjoy liberty, we must enjoy the exercise of the right to life. There is no pursuit of happiness without life. It’s inalienable…

“Legal does not equal just. We have the obligation to overturn unjust laws and to come to the aid of the oppressed. Slavery, women’s inability to vote, racial segregation and Nazism were all legal.

“We need, as citizens, to participate in the democratic process. There is much more to come. We must pray. Changing hearts and minds is a much more formidable task [that what has just been done]. We must have charity in all things and we need to treat everyone with respect. We must continue to work and build a culture of life. We must care for people, and show the mercy and forgiveness of God to everyone.”

Deo Gratias!

On the Solemnity of the Sacred Heart of Jesus, it is so appropriate that one of the worst SCOTUS decisions in history is overturned, joining Dred Scot and Plessy on the ash heap of history.

Every since I was old enough to know what abortion was, I—and so many others—have prayed and worked for today. This is a victory for the pro-life movement, and I don’t think it’s a bad thing at all to take today and celebrate and give thanks for this.

I am happy on a more personal level as well. If you’ve read my book, you know that I have often had people tell me that people with genetic diseases are not “worthy” of living, because our lives are too hard or we suffer.

Ninety-six percent of babies who are discovered to have CF in utero are aborted.

Today, that number will begin to decrease, and more people like me will have a chance at life.

It’s important to note that Dobbs doesn’t make abortion illegal in the United States. Instead, it throws the matter back to the states (which is where it should have been all the time.). Every state can determine their own abortion laws.

This is not the end of the pro-life movement. In the words of Winston Churchill, “It is the end of the beginning.”

We know that there is work to do to change perceptions. We know that more pro-family legislation is needed, and we need to continue to support the work of maternity/crisis pregnancy homes, pro-life charities, and other supportive networks.

If you want to contact your state legislators about this, be sure to do it politely (always, please, especially if you’re calling them).Let them know that you support legislation that helps the vulnerable. See what your state already has and then work to support it, financially, materially, or with your time. I’ll be compiling a list of resources later, but you can always start with the Sisters of Life, who do such great work in the US and Canada.

And let’s stop talking about how children are barriers to our lives, OK? Let’s stop talking about how women have “fewer rights” then men. Women, it’s time for us to stop believing the lies that the sexual revolution taught us. Sex is not free. Having sex with multiple partners is not liberating. Let’s reject this mindset for the lie it is. Let’s teach our daughters that. Let’s not continue to perpetuate a lie—which is really a malicious, twisted lie—that sexual freedom is a good thing, that we are “entitled” to do whatever we want, when we want it. That’s a perversion of our freedom.

There are certainly times when women find themselves in situations that they didn’t expect. The pro-life movement is there for them. We need to champion life in all its stages, and Dobbs gives us the framework to start doing that legislatively—but it also gives us the freedom to start doing more outside of the statehouses, to step up our advocacy and demonstrate that it’s truth that sets us free.

Women deserve better than abortion. Children deserve better than abortion. We all deserve better than a culture that takes innocent lives and treats them like garbage, and cloaks its satanic mission in words like “care” or “health decisions” or “choice”.

Today is a victory for life.

Let’s celebrate it, and then continue our work.

(NOTE: normally, I let the combox be totally open. But I will delete any comments that have bad language on this post, OK? I would do that anyway, but….just a reminder.)

The "Brave New Us" Podcast Interview is Live!

I was so privileged to be interviewed by Samantha Stephenson for her Brave New Us podcast! This episode is about genetic illness and genetic manipulation: Should we do it? Why or why not? I had a great time talking to Samantha and I hope you enjoy our conversation! You can listen here.

Seven Quick Takes: Bioethics and Knitting!

-1-

Hi! Tomorrow is St. Dominic’s Day! YAYYYY!

The Virgin Mary with St. Dominic and St. Hyacinth

So pray the rosary today, because the DOMINICANS GOT IT FROM MARY. :) One of the reasons I love being a Dominican!

-II-

Sometimes I talk about bioethics here. Today is a crash course.

One of the things I get a lot of is, “Does the Church [The Catholic Church] permit organ transplants and organ donation?”

Quick answer: Yes.

“What about from brain dead people?” (aka, neurological criteria)

Answer: yes

This…is a point of contention for some Catholics.

The National Catholic Bioethics Center talks about this all in detail. Here, to make it one-stop shopping, I am listing the following for you!:

organ donation: Church documents, Ethics & Medics, FAQ and Summaries, podcasts, Press Releases and News, Statements, book store items

the most important, and probably useful thing, to most of you, is this: FAQ On the Determination of Death Using Neurological Criteria.

-III-

So, if you don’t want to read all that…..cut and paste!

What is brain death?

“Brain death” refers to the medical judgment that a person is dead, determined by neurological criteria. Properly diagnosed, brain death means the complete cessation of all organized neurological activity throughout the entire brain, including the cerebrum, cerebellum, and brain stem. When all brain activity has ceased, the body irrevocably ceases to function as a unified whole. The appropriate phraseology here is “the determination of death using neurological criteria.”

It is appropriate to use this criteria?

The customary criteria for determining death are "cardio-pulmonary," i.e., death is declared after breathing and heart-beat cease. Technological advancements in critical care, however, have made continued circulation and respiration possible through mechanical means even after brain function has ceased. The use of neurological criteria for the determination of death can be legitimate according to the Catholic Church. In an address he gave to the [18th International Conference of Organ Transplant Specialists][1] in August 2000, Pope Saint John Paul II observed that their application, if rigorous, “does not seem to conflict with the essential elements of a sound anthropology.” He further stated that “a health-worker professionally responsible for ascertaining death can use these criteria in each individual case as the basis for arriving at that degree of assurance in ethical judgement which moral teaching describes as ‘moral certainty.’ This moral certainty is considered the necessary and sufficient basis for an ethically correct course of action.” Neurological criteria consist of three basic signs: deep coma or unarousable unresponsiveness, absence of cerebral and brain stem reflexes, and apnea. Pope Pius XII and Pope John Paul II both said the Church has no competency in determining death; this properly belongs to medical science. [1]: http://www.vatican.va/content/john-paul-ii/en/speeches/2000/jul-sep/documents/hf_jp-ii_spe_20000829_transplants.html

Can a Catholic receive an organ transplant?

Yes, a faithful Catholic may receive organs from a donor who is declared dead by neurological criteria. A faithful Catholic may also make provisions for the donation of his own organs in the event of his death whether it is determined by cardio-pulmonary or neurological criteria. Reasonable doubts about the rigor with which the determination of death would be made, however, may warrant caution.

Now, note that last part. In some places, like China, organ harvesting takes place in, um, less that salubrious ways. (To put it REALLY mildly.) So yeah, if you’re in a. place where there was be questions about this…..then yes. You can ask. You can say you don’t want a transplant.

I can say, myself, that if the Church said no to transplants, I would not have gotten one. Full stop. End of discussion. I’m dead serious. (Really, dead serious, because I would’ve…been dead! Oh, my black humor sometimes.)

-IV-

OK I think we’re done with the serious now. :) But yes, the Church, like the rabbi said in Fiddler on the Roof, has a position on everything! :)

(In Fiddler, it’s, “Rabbi, Is there a blessing for the Czar?” “There is a blessing for everything my son!…May God bless and keep the czar….far away from us!” )

Check the Catechism. In fact, you do have a Catechism at home, right????? (Because seriously, you should.)

-V-

I didn’t do a yarn along this week, but next week! Yarn! But here’s a peek at Patty’s baby blanket….

-VI-

If you want a signed book, email me; they’re $20 and include a book mark, prayer card, AND shipping! It’s time to start thinking about Christmas! :) :) I also have an ebook!

-VII-

Book club is still happening! My BGLs have been nuts so it’s sort of thrown off the schedule, but it you want to jump in, you can! All the previous videos are on my Facebook page. On Tuesday we’ll be meeting at 3:00 EST!

Billy Love

Getting to meet Billy on Sunday

The first post I wrote about Billy is, far and away, the most popular thing I’ve ever written.

I’m so glad that so many people got to know this incredible little boy and his fabulous parents. I’m so glad—and overwhelmed in a good way—by all the comments, prayers, and e-notes I’ve received saying they are praying for Billy and his family.

Sadly, Billy passed away in his father’s arms this morning (Tuesday, March 23).

He was loved, and so cared for, until the end.

These six days they had with him were an incredible gift from God. They were a miracle. I’m sure about that. Billy wasn’t expected to last an hour. Instead, he gave his parents almost a week to rejoice and delight in him—and for us to delight in him as well.

Tiffany got to nurse him. Bill changed his diapers. They slept with him on their chests, cooed at him, took videos, rocked him, and loved him. Billy grasped their fingers and looked into their eyes. His grandparents and aunts and uncles delighted in him. And so did all of us.

The day they left the hospital, the membrane that covered Billy’s encephelocele began to break down. The neonatologist said this was to be expected. At home, the brain tissue began to bleed. But through it all Billy and his family had the love and support of their family and the wonderful hospice nurses from The Resort. Billy was kept comfortable and was always in someone’s arms. He was unbelievably loved, and only knew love his entire life.

I was so blessed to be able to see him. I was so blessed to see my best friend hold her child, her first-born, to mother him, to see Bill hold his son against his chest and feed him. I stroked his little ear and marveled at his tiny fingers and even tinier nails. I delighted in him.

On Sunday, we heard the gospel that contains my life verse—Jesus healing the man born blind. My verses are taken from the beginning of the gospel’s ninth chapter:

As Jesus passed by, he saw a man blind from birth. His disciples asked him, “Rabbi, who sinned, this man or his parents, that he was born blind?” Jesus answered, “Neither this man nor his parents sinned. He was born blind so that God’s works might be revealed in him.”

I don’t know why I was born the way I was—but God does. I don’t know why Billy was born the way he was—but God does.

Maybe we were both born this way so that we can glorify God. I certainly hope so. That’s what gives me comfort, and that’s why I consider this my life verse.

Billy’s short life glorified God. His parents’ faith and love glorified God. The support, community, love, and prayers of all of you for this little family glorified God.

A few weeks ago, Bill and Tiffany’s church had a luncheon for them, to celebrate Billy and to provide support for Tiff and Bill. At the lunch, we made a quilt, where every guest was invited to write something to Tiff and Bill on a square. The quilt was draped over their couch when I went to visit. It is beautiful.

I had brought my Bible with me, and I spent time going through it, wondering what to write. Finally, I settled on one of my favorite verses. It’s the verses that begins the epilogue of my book.

“God himself will be with them;
he will wipe every tear from their eyes.
Death will be no more;
mourning and crying and pain will be no more,
for the first things have passed away.”

 And the one who was seated on the throne said, “See, I am making all things new.” 

—Revelation 21: 4-5

Today’s Mass reading from Isaiah talks about a time when infants will not die after a few days. When I heard that at the streamed Mass this morning, I almost dropped my coffee mug. Billy was dying, and here Isaiah spoke of a new world, where we would all live the lifespan that God appointed us. There would be no more crying, or death, or sadness. We would all live together to old age. Isn’t that what every parent wants for their child?

We all loved Billy. I thank you for all the love that you gave this family, that you continue to give this family. Please pray for them. At this time, the state of Ohio is essentially shut down—I don’t know what’s going to happen with the funeral. Thankfully, their families are local, so they have that support here in town and they can be together. Please continue to pray for them.

Seven Quick Takes--writing, pro-life ministry, and Washer Monster

Linking up with Kelli!

-1-

Around these parts this week:

Doing the best you can with what you have

Prime Day deals—Prime Day is over, but if you haven’t checked in with Take Up & Read lately, we have a lot of gorgeous studies! Maybe it’s time to start Christmas shopping?

-2-

This is sort of a…well, a sad take. But.

On Twitter this week I saw a woman writing about how she didn’t know how to get a casket for her miscarried child.

The Trappist monks of New Melleray Abbey provide infant and child caskets free to families.

Free. Gratis. No charge.

Go here, and scroll down to “child”, and select a size.

These are beautiful handmade caskets. In addition to the caskets, the monks will plant a memorial tree for your child, and remember your child in a special Mass. The parents also receive a keepsake cross made of th same wood as the casket.

If you need one IMMEDIATELY, call them at:

888-433-6934

They answer the phone 24 hours a day.

They also have a child casket fund, where people can donate to support this ministry, here.

This is such a beautiful service they provide. I know it’s terribly hard to think about, but I have had friends who have lost children to miscarriage. This makes one part of it easier—you don’t have to make your child’s casket or fumble around at a funeral home. The monks will do it, beautifully, for free.

-3-

The book skips along! It’s done with copy edits so my editor has it now and is working on it. No cover art yet but the minute I have it I’ll share with you (subscribers find out first!)

-4-

This week I finished a long linen scarf I knit to use in the summer. I love it. It’s a gorgeous color. So I went to block it in my washing machine. I had run a test piece of linen before and it came out fine so I thought I’d be fine this time.

NOPE.

Washer Monster wanted to eat it.

via GIPHY

But my lovely maintenance man here saved it! Yay!

Yay! It’s saved!

I’m always amazed at how well linen blocks. It’s just great. Such a difference!

-5-

I’m on an Emily Blunt movie binge lately. I watched The Devil Wears Prada and A Quiet Place this week and I’m going to watch Mary Poppins Returns tonight. (My movie BF Colin F. is in it too. I do love his movies.)

-6-

Sometimes we live in Hoth, here in Ohio, and sometimes it’s in the 90s with a heat index giving us a temp of 114. Yeah, it’s that day. So, movie binging and working on house projects today!

-7-

It feels hard to believe that July is half over and that Target has school supply displays up. When do the schools in your area go back? Ours tend to go back in the middle of August now, but they get out before June.

Seven Quick Takes--You Are Not a Mistake

Linking up with Kelly!

-1-

OK, It’s about to get really earnest and passionate in here, folks. Don’t say you haven’t been warned.

With all the new pro-abortion laws coming out, the number of tweets I’ve seen, and articles I’ve read, about how mothers “need” to abort children who are disabled makes me want to scream. There’s nothing quite like the experience of being told that you are not worthy of living to make you really angry.

So we’re just gonna lay it all out here:

If you are a person with a “genetic anomaly”, like me:

You deserve to be here.

You are loved. You are here because God loved you so much that he wanted to create you. And here you are. You are not a burden. You are not a mistake. You are a beloved child of God.

Any one else who says anything else? Deserves to be smacked upside the head. (Verbally, at least.)

—II—

DO NOT give in to these people, my fellow genetic mutations. :) You are WORTH EXISTENCE. If I never write anything else, ever again, please remember that. Please remember that you are loved beyond all measure by God who created you.

-III-

Remember Pope Benedict:

-IV-

OK, is that enough angst for you? And passion?

Because, seriously, folks. Seriously.

-V-

Onto other things! I have submitted my draft! YAY!!!! The first hurdle is cleared in the journey toward Real Bookdom! Yay!!!!!!

-VI-

If you just cannot wait until January to read a book of mine, Catholic 101 is available now and is five bucks!

-VII-

I have scrummy linen yarn sitting in my mailbox that I have to go fetch, so we’ll wrap this up. But remember.

You are not a mistake.

via GIPHY

Seven Quick Takes

Linking up with Kelly!

—ONE—

I haven’t done this in awhile, so, hey, time to do one! Especially since we’re supposed to get a big old snow storm with insanely cold temperatures this weekend, so if you never hear from me again, at least you have this. (I’m kidding. I’ll be fine.)

This cartoon made the rounds a few years ago, but once again it looks like I’ll be living in Hoth:

—TWO—

There’s been a lot going on over here. I’m moving, so that’s the first thing—in March! So I have two months to get my place packed up. Which means that yes, I’ve been watching Tidying Up with Marie Kondo on Netflix, and I love it. (And no, she’s never said that you only need 30 books, where did people get this?! I have WAY more than 30> I have more than 30 cookbooks, probably—yes, I might have a problem.)

But I’ve really enjoyed the process. If you haven’t heard of her, the idea is that you get rid of everything that doesn’t “spark joy”, or that you need (like, a screwdriver, for instance. Or copies of recent tax returns.). So you let go of things that you’re just holding on to out of guilt or uncertainty or “just because”, and it’s done in categories: clothes, books, papers, “komono “ (miscellaneous—she divides it down further), and sentimental items. I’m on “komono”, and it’s mostly household stuff and knitting stuff that’s left.

—THREE—

Speaking of knitting, here’s this week’s yarn along! I’m making a drachenfels shawl, again. :) Deets are at Ravelry, here.

—FOUR—

In other news, I’m very close to submitting my book proposal! Oh my gosh. This has been a few months in the making but I think I’m in the home stretch! Yayyy!

And you can help me!

Please subscribe to the blog! This is something that really helps me with publishers. It shows I have people who care about what I write! So do that, and then follow my author page on Facebook? Every follower/subscriber is important! If you already subscribe, thank you! Mwah!

—FIVE—

The proposal is a memoir about my life with CF and transplant and how it ties into the idea that life is always worth living, no matter what’s “wrong” with you. Today is the March for Life, so yes, I feel it’s a timely topic. I’ve had people tell me that I shouldn’t exist. But I DO exist and so there. :-p

—SIX—

I made a holy hour yesterday, since I might not be able to get to Mass this weekend depending on weather. If you don’t make a holy hour (Or holy half hour, or Holy Fifteen Minutes!), can I recommend that you start? It’s restorative, transformative, energizing….it’s time with the Lord who loves you so much! Get thee to an adoration chapel! Or get to Mass early, if you can. God wants to visit with you!

—SEVEN—

And, also, if you missed it, Take Up & Read has a new study! We’re starting on Monday but feel free to hop in whenever! It’s called Call Me Blessed (here’s my blog post about it!)—and you can get it at other bookstores besides Amazon! Yay!!!!! It’s all about our vocation as women, our dignity as women, using women in the Bible and the writings of Pope John Paul II. I do hope you’ll join us!

Burdens

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.

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.

On My Soapbox: When people say they want "healthy" kids

(c) Erica Kay Photography

and some theology

I know that when most people say they want a “healthy baby”, they’re not being rude or mean. They’re probably trying to be nice.

But guys, I wasn’t a “healthy baby.” I looked healthy, initially, but I wasn’t. I had seizures. I had (and still have) thalessemia minor (I think it’s called type b now? Not sure). I got the CF diagnosis when I was 11.

So, should my parents have just pitched me back? “Nah, sorry, we wanted a non-defective model.”

And I know that people do that now. People kill their babies in the name of the kids “avoid suffering” in their lives. Bull crap. “Yes, let’s kill you, so you never get to have a life.”

That ties into part two: saying “God is Good” only when things go the way you want them to go.

Guys. God is good all the time. He is Good. It is in His very nature to be good. But that doesn’t mean that God’s Goodness=what you want.

Because it doesn’t work that way.

God created me with my “defective” genetic code and my blue eyes and my blonde hair and my fair skin and my wonky teeth and an ankle that cracks oddly. I have a really good memory and I love children and I do a pretty good Sebastian the Crab imitation. I have The Phantom of the Opera libretto memorized. (And Les Miz. And Miss Saigon. And Ragtime. And Parade…)

And yeah, I also have CF. I had a transplant. I’ve got scars. And I do talk about it, because it has become clear to me that it has to be talked about, because people see illness as scary and something to be avoided and pain as awful, to the point that Canada is allowing pediatric euthenasia.

God is always good. And God made me the way I am for a purpose. Is it always fun? No. It is not. There are times when I’ve been really peeved about it, to put it mildly.

But at the same time, it has made me who I am, and in general, I like who I am. I wouldn’t want to change that for the world.

God is not being “mean” to me. He created me the way he wants me to be.

And health doesn’t always stay health. Health is a transient thing, guys. Everyone will get sick. Everyone will die. It seems that in our society now we are idolizing life and health to the point that it is fully unhealthy. We’ve forgotten that we will die, that life is fleeting, that our home isn’t here.

Children are a gift from God, no matter how they come.

And God is always good. And He always loves me.

He always loves you, too. No matter what.

As [Jesus] passed by, he saw a man blind from birth. His disciples asked him, “Rabbi, who sinned, this man or his parents, that he was born blind?” Jesus answered, “Neither he nor his parents sinned; it is so that the works of God might be made visible through him.”

—John 9: 1-3, NABRE

Doctors, Death, and Alfie

Unless you're brand new, you guys know how i feel about end of life issues. 

But I see that lately, there's some confusion about ethics when it comes to these issues. So, I thought I'd work them out here, from a Catholic perspective, and also from the perspective of someone who has lived with death, intimately, many times. 

The first thing we need to understand: hospice care/ palliative care is not the same as assisted suicide.

Hospice/palliative care is used when a definitive diagnosis of death has come down--usually, it's going to happen soon (the "six months to live" thing), but it doesn't have to be. Hospice is a legitimate choice. Here, the patient has decided that the only thing she wants is comfort care--she doesn't want heroic measures take to preserve her life (meaning, ventilation, ICUs, etc.) The patient wants to die, peacefully, at home or in a hospice care center, with family around. 

I could have chosen hospice care instead of going for a transplant, and it would've been a legitimate choice, because there were no other medical options left. This is what Barbara Bush did at the end--she decided, I don't want all this. I just want to die peacefully, with my family around me. This is totally legitimate. Now, this might involve IV fluids, for comfort, or medication, for comfort. But the person has come to grips with death, and has decided she doesn't want any more medical treatment. Again--this is legitimate. 

When hospice is taken, it means that the patient knows there isn't going to be a cure. Curative treatment has generally stopped. 

But hospice is truly death with dignity. 

Assisted suicide is not. Assisted suicide is when someone gets a medical diagnosis and decides that, instead of dealing with this by the hospice route, it would be better to die now. I have little sympathy for this view. You can read about my feelings here.  

Assisted suicide means what it says--the person wants death, and wants it immediately. This is legal in some states in America. That makes me very sad. 

And this brings me to Alfie. 

I love doctors. Doctors have saved my life. But doctors have also almost killed me. 

Doctors are not infallible. Doctors can be wrong. 

Now, this is where a fine line exists--there are times when families want doctors to be wrong, desperately. They want to believe their loved one is still alive. However. 

If a person is dead--there are tests that prove this. For brain death, there is criteria. 

If a person is dying, then we generally know this. But this is where it gets tricky. A doctor can say a patient is past the point of no return. Doctors told my parents that, when I was 18 and in the ICU. The doctor, clearly, was wrong. Sometimes doctors don't do the digging. They don't commit to the patient. They just write a patient off. And that leads to, well, she's going to die anyway. 

(We're all going to die anyway....)

But--just because a person is suffering or very ill--that does not mean we move in to kill them. 

Denying air, hydration, food, to a person in a coma, a persistent vegetative state, or what have you--that is unconscionable. That is not the same thing as hospice. That is killing someone. It's no different that putting a pillow over someone's face.

In case you're new to the Alfie case, quick summary--the boy has a neurological disorder that the doctors haven't figured out. It's destroying his brain. The doctors have decided that nothing more can be done, and so they took him off his ventilator. Alfie is breathing with only the assistance of oxygen cannulas now (no mechanical ventilation). He is continuing to breathe. The hospital has now given him oxygen and hydration, I think.

The parents wanted to take Alfie to another hospital for treatment. The courts in the UK have denied the parents this, because in the UK, the parents aren't the final arbiter of the child's best interest--the doctors are.  

Guys, this is terrifying. I love doctors. But doctors can be wrong. Three doctors, at least, were wrong with me--and almost killed me, three times. 

Doctors have also saved my life--three times--because they didn't listen to the first doctors!

The doctors decided that Alfie will never get better. That he is suffering. So it's better to end his suffering....by killing him. Because they don't think he can get better. So...it's better than he's dead. 

That's the same thinking that undergirds wrongful birth suits. And we know how I feel about that.  That a life with suffering is not worth living. 

I wish I didn't have to write about this stuff. But I do. And it makes me sad that I do. 

Guys, please, don't think that these things are all the same. They're not. End of life issues are complicated, but please educate yourselves.

Circle of Life

“We are not some casual and meaningless product of evolution. Each of us is the result of a thought of God. Each of us is willed, each of us is loved, each of us is necessary.”

— Benedict XVI

Friday the annual March for Life was held in Washington, D.C. 

It was also Holocaust Remembrance Day. 

And the day that President Trump signed an executive order lowering the number of refugees that can enter the United States, as well as denying entry to certain refugees for 90 days, and a host of other things pertaining to refugees around the world. 

What do these things have in common? 

They're all about life issues. 

We in the pro-life movement are often accused of only caring about people "before they're born", and that if we really cared about people, we'd make contraception more widely available, so we wouldn't "need" abortions. We'd also support social programs that help people instead of cutting them. 

There's a lot to untangle there. And I wasn't even going to write about this, because people know how I feel (I don't really sugarcoat it). But I feel like there needs to be some sort of response to all this, even if it's my inadequate one. So here we go. 

First, there is no barrier to getting birth control. I really don't know why people think this. Condoms are available at any corner drug store or grocery. There was a basket of them in the entryway of my campus health center in college, free for the taking. Birth control pills can be prescribed by any OB-GYN in the nation. Yes, you have to pay for them. Shock. I'm of the opinion that things like birth control and Viagra should not be free, especially when people have to pay thousands of dollars for drugs that keep them alive. If you want to have sex, and you don't want to get pregnant, take the proper precautions. Be responsible. If you do get pregnant, abortion is not "health care." It is not birth control. It is killing a human being. Full stop. So, in order to avoid pregnancy, either don't have sex, or be responsible. And don't tell me that you can't afford a condom. And if the guy won't wear it, then, as a self-respecting woman, you need to dump him fast, because he is not a responsible dude who cares about you and the potential consequences of actions. Don't be dumb, ladies. Please. *

We care about unborn children because they need someone to care about them. They have no voice. They can't make cool YouTube videos or get covered by CNN as they hold a rally. They only have us. And if the most fundamental right--the right to exist--is denied, then how can we say we're for peace anywhere else? Is the logical failure apparent yet? It should be. We have to start at the bottom, at the bedrock. All life is worthy of being protected. 

Supporting social programs does not mean that you support government programs. Most of the pro-life people I know (If not all of them) also support pro-life charities that help pregnant women. They're just not government-run programs. They're private charities/organizations. Some examples are: 

Sisters of Life

Mary's Shelter VA

Pregnancy Decisions Health Centers

These are just a very, very few places. But there are so many more, that exist all over the country, and are spreading. Don't say that the pro-life movement doesn't care about these children and these women. Because we do. Small government conservatives generally don't want government doing a bunch of things. We want communities to do them--and they are. 

Now, does that mean that there shouldn't be a basic floor that people don't fall beneath? Sure. But that's sort of outside the scope of this discussion, and good-hearted and good-intentioned people can disagree on how best that should occur. 

Now, if we are to be pro-life in the best sense that does mean respecting all life--realizing that all life has value. That does mean that the death penalty has extremely limited applications (as the Catechism of the Catholic Church says, here). That means we don't kill people who are old, or terminally ill. It does mean that we should help refugees. The vetting process is intense.  Now, does that mean that nations should let in whoever wants to come to their country? Well, probably not. States are sovereign and they are allowed to make decisions that they feel are necessary to protect their people (and immigration laws exist for a reason. But we're talking about refugees, here, not "regular" immigration.) But the Church says in the catechism that: 

2237 Political authorities are obliged to respect the fundamental rights of the human person. They will dispense justice humanely by respecting the rights of everyone, especially of families and the disadvantaged.

The political rights attached to citizenship can and should be granted according to the requirements of the common good. They cannot be suspended by public authorities without legitimate and proportionate reasons. Political rights are meant to be exercised for the common good of the nation and the human community.

Refugees are certainly among the disadvantaged. We shouldn't act out of fear, but out of logic, out of consideration for all sides. And this extends to administrations on both the left and the right. 

And Holocaust Remembrance Day? 

Jews tried to flee Europe in order to escape Hitler and the rise of Nazism. And the U.S. did not respond well. The book Alex's Wake tells the story of Jewish refugees who were coming to Havana, but were denied entry there and in the United States and Canada, and forced back to Europe and the Holocaust. 

Anne Frank's father tried to arrange immigration to the U.S., but was denied. And we know how that story ended.

We look back on these stories and ask, how could the government have made those decisions? Probably because of fear. How could the U.S. government incarcerate thousands of Japanese-Americans? 

I think we have to learn from history. And we have to support life. I can't imagine being one of the people in the airport, thinking they're going to be a place of safety, and being told that they can't leave--that they're doomed to stay in a war zone. Think about that for a second. 

We have to protect life in all its stages. We cannot allow people to become "other" because we are all children of God. No one is other. 

We cannot look away. We can't turn aside. 

We might disagree on policy decisions--how best to educate children, how best to provide health care to people, what the tax rate should be. But we cannot disagree on the fact that all of us are human beings, and all of us are God's. We are responsible for each other at a basic level. 

Babies. Jews. Refugees. 

People. 

 

________

* That being said, I'm Catholic, and I don't believe sex outside of marriage is moral, nor is the use of artificial birth control inside of marriage. I know not everyone feels that way. :) I'm talking from a policy perspective here, not a religious one. 

Seven Quick Takes No. 113

I. 

First up--this week's post roundup: 

SITS girls Summer Scribbles No. 1

Catholic 101: Those "Screwball Apostles"

II. 

I'm going to Pittsburgh this weekend for my godson/cousin's high school graduation. He actually graduated last week, but the party is this weekend. I can't believe he's that old, first off. I was fifteen when he was born! He'll be going to Pitt to study computer science. He's a good kid, and I'm so lucky to be his godmother.  

III. 

Just a reminder: my Jeopardy! appearance is July 18th!!!

IV. 

(Yes, that merited the cool font. You know it did.)

I'm actually sort of nervous about people watching it. I can see the whole slew of tweets and Facebook postings of "YOU IDIOT! How did you not know THAT?" And honestly, there's at least one question I'm still beating myself up about. :-P 

I did manage to impress Alex T., though. I did. But that is a story for the day the show airs. :) 

V. 

I did manage to whip the sketchbook out this week, not once, but TWICE! Oh yeah! 

Lunchtime sketching--lamp and a wonky pitcher. :-P (I was trying to do single line contour on that guy, so....)

Plant at Dawes Arboretum. 

VI. 

California legalized assisted suicide this week. Why that's a bad idea. 

VII. 

And my hockey team is continuing to hate me--game 6 in San Jose.....

Seven Quick Takes No. 112

I. 
Previously on the blog, here (in case you missed any of it!): 

Sugarcoating Suicide: Me Before You
Ordinary Joy
Summer Reading

That first one has become particularly relevant since I found out that the state of California will legalize assisted suicide next week. 

II. 

In My Summer Reading post, I talked about Eligible. Well, I finished it yesterday, and it was terrible. Terrible isn't really a strong enough word for how bad it was, acutally. If you are at all tempted to read it, please, for the Love of All That is Holy, go pick up the real Pride and Prejudice, or watch the Only Version That Exists In My World. 

III. 

Also in the world of Jane, I'm re-reading Persuasion. If you haven't read that one, go for it, please. It gets overlooked sometimes!

IV. 

If you're a Facebook friend of mine, you're probably wondering why, around 8:00 every other night, my feed becomes incomprehensible with sports jargon. It's because the Penguins are in the Stanley Cup Finals, and I adore hockey.  

My first NHL game was against the Hartford Whalers (Wow, I just dated myself) at the old Igloo--the Civic Arena-- in Pittsburgh. I think this was in 1990. But anyway, I have been a lifelong fan since then. Poor Mary, when we were in LA, had to put up with my attention totally deviating from her if hockey came on the TV when we were eating. I'm like a dog going "SQUIRREL!" 

So, until the series is over (and hopefully the Pens will sweep and it'll be over next week, and we'll have our Fourth Stanley Cup victory), there might be some weird Facebook posting. :) 

V. 

If you're wondering why I root for Pittsburgh teams when I live in Columbus--it's because my parents are both from Pittsburgh. In fact, they were born three days apart (although in different hospitals), and Dad is a Pitt and Carnegie Mellon graduate. Mom used to work at Pittsburgh Children's before she married my dad. So all of us kids were brought us as Steelers, Pirates, and Penguins fans, and it stuck. Even though my brother went to OSU, we're not very strong OSU fans. 

And I hate calling it The Ohio State University. Some of my friends do it just to spite me. :-P

VI. 

It go so hot, so fast here. It's like we didn't really have spring at all. It was cold, and then "boiling lava hot" (as Jim Gaffigan says in his Hot Pockets sketch). Oh well. At least the pool's open and my A/C works!!!! 

VII. 

Finally--do any of you use fountain pens? I just started and I have to say, I love them. I feel very writerly and Jane-ish (although I know Jane didn't use them). Ink spots on my fingers? Fun! 

Sugarcoating Suicide: Me Before You (Or: Why you should not read this book or see this movie)

I get really, really tired of defending my existence.

If it isn't people telling me that my transplant was immoral, it's people who think that assisted suicide for disabled people is a good idea, and a sign of love. 

Yes. Because, you know, nothing says I love you like KILLING YOU. 

Let's look at the cognitive dissonance, here: When someone--say, Robin Williams--commits suicide, social media is flooded with messages like, "suicide isn't the answer", "please get help-- don't be afraid of getting it", "I wish people knew that they could talk to me if they're ever feeling like this." Etcetera. You all know how this goes. People are sad, as they should be. People continually say that suicide is NOT a good option. And it's not. 

But: when it's a disabled person who kills himself, oh, well, that's love. 

And that's exactly what happens in the new movie Me Before You, based on the novel of the same name by JoJo Moyes. In it, a woman falls in love with a quadriplegic man she's taking care of--but, oh, he wants to kill himself. Because, you know, life in a wheelchair isn't worth living. And if she REALLY loved him, she'd go with him to Switzerland and be there when he kills himself. Because that's love: supporting you in all your bad choices! 

No. You know what love is? Love is what Mary Lenaburg and her family did for her daughter, Courtney. Love is what Kelly Mantoan and countless other parents do every day for their kids who need their help. Love is my mom washing my hair when I'm nineteen years old and her back hurts, or my dad staying up during countless ER runs with me, or my siblings learning how to reconstitute and push IV drugs. THAT is love. 

My life isn't perfect. Show me someone who says his life is perfect, and I'll say that this person is a liar. Did it suck, being twenty-three years old and not being able to brush my teeth without sitting down after? Does it suck now, when I have to ask people to repeat things because I don't always understand them, or when my CI malfunctions? Yeah. But I would never, ever say that that was worth being dead. Obviously, I like my life just fine, since I've been to the edge of death and come back from it five times. I must think that something is worth living for. 

When we start sugarcoating assisted suicide--like in The Sea Inside, Million Dollar Baby, and The English Patient--we are trying to make it morally acceptable. We're trying to tell people that suffering is bad and we should avoid it at all costs, even by killing people who are suffering. Guys. That's not love. That's not living boldly, as the movie's tagline execrably proclaims. 

Living boldly is living the way my friend Sage does, while she waits for a lung transplant.  It's what Andi's kids do every day, whether they're running crazily at a T-ball game or singing in show choir. Living boldly is embracing life in all its highs and lows and living anyway.  

I've had people tell me that they would've aborted me, if they'd been my mom. 

To my face, people. 

* * * 

In The Giver, a dystopian novel by Lois Lowry, Jonah, the main character, discovers that what everyone calls "release" is actually euthanasia. In his community, old people are killed, people who break the rules three times are killed, even one of a set of twins is killed. Babies that don't sleep through the night when they're a year old are killed. Why? Because they are inconvenient. Because they make life difficult for the community. Jonah can't live in a system like that, and runs away with Gabriel, a baby that is slated for "release." He risks his own life to save the baby's--because if you try to escape from the community and are caught, you are "released." 

The community's highest value is ease of life. No one experiences pain. No one, actually, experiences any emotions. People take a pill every day so that they don't have emotions. Parents don't have children--they are "given" children, who are born via artificial insemination. When Jonas asks his parents if they love him, they laugh at him and say it's a meaningless word. And thus, the community medicates away their humanity--and kills what is inconvenient. 

Yeah, it's a book--but are we that far off from that? Where do we stop? 

The abortion rate for Down Syndrome kids in the U.S. is 67% In Europe, it's 92%. We are killing babies because they are imperfect. Because they are inconvenient.  This Atlantic headline pretty much says it all--why on EARTH would you keep an imperfect baby? 

People sue for "wrongful birth"--saying that they wish their babies had never been born. Not all cases of CF are detectable in utero, because there are thousands of possible mutations. So if a kid with CF is born, and his parents don't like it, they sue. They can pretty it up all they want and say they need the money for the kid's care--but it's not about money. It's about having a kid who isn't perfect, and someone needs to pay for that. Someone made "a mistake."

Jesus had something to say about this: 

You know who made the "mistake", here? It was God. And no, it's not a mistake. God did all this for a purpose, and for a reason. My crazy genetic code exists to bring Glory to God. That's why I'm here.  

Suicide is not an answer for anyone, at any time. It's not romantic and it's not brave. In the case of assisted suicide, it's reprehensible. 

Life has value beyond its utility. We are not cogs in a machine. We are human beings created in the image and likeness of God. And to purposefully commit suicide is not brave. It's cowardly. It flies in the face of bravery. 

I'm not a hero. I'm not a saint. I screw up. But the answer to challenges isn't to give up. The answer is to live the best you can, in the circumstances you are in. Love is helping people find a way to live--not by helping them die. 

Deciding who lives and who dies

First, we have some OP Power, from Fr. Thomas Petri, who is the Academic Dean of the Dominican House of Studies in D.C. 

A sampling: 

Do we lose something, as a people, when it not only becomes legal but also expected that those with terminal illness should “choose” to die? If the European experience tells us anything, it is that those expectations willinevitably come. As clinicians morally coerce patients to end their lives (or impose that choice themselves) they will say that such is the caring thing to do, to free the friends and family who would otherwise be bound by responsibility. Yet no one is an island. It’s okay to be dependent. And though it’s difficult, we each know we owe constancy to those who need us the most.

This is one of my hot topics, obviously. In some countries, I'd have been aborted, using today's technology. I am genetically imperfect in a variety of ways. I have CF. I have thalessimia minor--and in Cyprus, babies with thalessimia are aborted, to the extent that there aren't new babies born with it. * 

I've been dependent on other people for most of my life, and I will continue to be so. I can't use a phone, so my parents have to make any necessary phone calls for me. My parents pay for my medications that keep me alive, because my salary is so low that there's no way I could pay for all my health care and live independently. My mom accesses my port every month. My life is totally dependent on the drugs I take. Without them, I'm not here. Heck, I'm only alive because someone decided to donate her organs. Like Blanche Dubois, I exist on the "kindness of strangers." 

Is it great, all the time? Well, no. I'd really like to be able to use a phone, but I like being alive more, so I don't begrudge--too often--the drugs that made it necessary for me to have the bionic ear. 

By my count, I've been close to death about five times. I've had some pretty unpleasant hospital experiences. (pH probe, chest tubes--I'm looking at you!). But never have I wished, in those moments, that I wasn't alive for them. 

"Princess, life has it all over death!", The Engineer tells Kim in Miss Saigon. And that's true. Life is the greatest gift we have. It's not perfect. No one's life is perfect. There will be pain. There will be suffering. It's guaranteed. We cannot prevent it. We cannot remove it. 

A fulfilling life isn't about what you can do. Life is precious because of what it is. We are created in the image and likeness of God. The angels envy us. No matter what we can or cannot do, physically or mentally, the most vulnerable among us need protected. Not snuffed out. 

______________________________

* for the Cyrus stat, from Wikipedia: A screening policy exists in Cyprus to reduce the incidence of thalassemia, which, since the program's implementation in the 1970s (which also includes prenatal screening and abortion), has reduced the number of children born with the hereditary blood disease from one of every 158 births to almost zero.[