Thoughts on the Eucharist in the wake of a diagnosis of celiac disease

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At 6:15 the night before Thanksgiving, we got the call we’d been awaiting for nearly three months. My developmentally disabled teenager has celiac disease.

We were prepared, and had already started the transition to a gluten-free diet. But it was the next morning, at Thanksgiving Day Mass, when I really processed just how big a transition this was. I had already received Communion and was back in the music area playing my flute when I had the gut-wrenching realization that I hadn’t even thought about Communion for my daughter. There was no finding a gluten-free host at this point. The choices were to receive or not.

I let her receive. And when we got home that night I sent a note to my pastor to ask how procedures work at our parish so we’d be better prepared for Sunday.

Which we were–sort of. They put a host in a pyx and the head minister brought it over when she saw my daughter coming up for Communion. But the Eucharistic minister didn’t know what was going on and put a regular host in the pyx on top of the specialty host. So–cross-contamination! Yay!

We’re on week 1 of this transition, so it wasn’t the end of the world. There’s a learning curve here, for everyone involved. But as I watched from within the music area, unable to intervene, I groaned inwardly, glimpsing the magnitude of what we’re going to have to remember every danged week for the rest of her life.

And then after Mass, I learned that gluten-free hosts are specifically disallowed by the Church. They can do low-gluten, but not gluten-free.

The reason behind this I have not actually explored yet, though I gather it has something to do with “it can’t be bread without gluten.” (Of course, little wafers aren’t bread, either, but you know. And no bread in the history of humanity has ever consisted only of wheat and water. But whatever.) I was actually enraged, my inner mama bear ready to rumble, but I decided to follow my own admonitions to others and ask a bunch more questions, trusting–or praying, at least–that the answers would render the rage irrelevant. Which ended up being mostly true. I was given the specifications for the low-gluten hosts used in my parish. Out of 12 testing dates, 2 were over the amount of gluten we have been told is OK. The other 10 were below it. It’s enough for us to go forward–for now, at least. Until we get our feet wet and know more.

But here’s my problem. The Catholic community has a huge gap in understanding of the Eucharist. We have people who, on one side, don’t take Real Presence seriously enough. And on the other, we have those who take it so seriously that they believe gluten in a host either no longer exists after consecration, or that it’s irrelevant because God will protect us from any harm coming from the gluten in the host. (I’ve heard both of those in the past week.)

I’ve said before that I am not convinced the problem of Real Presence is nearly as dire as it has been made out to be. I think the wording of the questions on that sensational survey was the problem.

I do, however, think both of those latter beliefs are a big problem–indicative of a superstition mentality among Catholics and, by extension, evidence of a need for greater spiritual maturity.

Our bishops are aware of the problems, or they wouldn’t be focusing on the Eucharist in that new document. And yet apparently, a bunch of people wanted to boil that catechesis down to “pro-choice Catholics should be barred from Communion?”

Thank God, they didn’t go that route. The question of whose politics mirror Catholic teaching and whose don’t would have wiped out virtually every politician, regardless of party. Death penalty is a pro-life issue, too. And racism, as the US Bishops themselves said.

But I’ve got to say, if our focus around the Eucharist is on how to put up as many barriers as possible, then we have at least as big a problem in the institutional Church as we do among the laity.

Thank God, I am intelligent and well-educated in my faith, and I had a line of options queued up for my daughter. But if the Eucharist is as critical to life in the faith as we claim to believe it is, we should be working to make it EASIER for everyone, regardless of medical condition, to receive safely. We should NOT be putting obstacles in the way.

A Post For All Who Call Themselves Pro-Life

Today, as we march toward World Down Syndrome Awareness Day this Sunday, I’m harvesting another post I wrote long ago on my personal blog–one that marks a big step on the journey I’ve often referenced here, the journey from a black-and-white world view to the recognition that all issues have to be weighed together, because they all exert influence on each other.

I wrote this in 2011, and I’m going to leave the text exactly as it stood then.


My chromosomally-gifted girly-girl at age four, which would have been around the time this post was written.

A year and a half ago, I was working on legislation to ensure that children with disabilities weren’t denied therapies because of their disability. Our sponsor (my mom) was approaching her term limit, and we needed a new one. We knew we had to find a Republican, because the legislature is Republican-controlled. We also knew that putting mandates on insurers could be a tough sell. Still, we felt sure people on both sides of the aisle would recognize that this issue was bigger than political philosophy.

I contacted a former Republican state senator who was well-connected and reportedly supportive on disability issues. I told him what we were hoping to accomplish, and asked him to suggest people to approach as sponsors.

His reply raised my blood pressure for weeks afterward. (Eventually, its presence in my inbox became such an open sore that I had to just delete it. Just thinking about it still gets me going.) However he intended it, it came across as condescending: a man clearly much wiser than this do-gooder little girl, and determined to teach me the error of my ways. His philosophy went something like this:

Insurance is not meant for ordinary care. It’s meant for emergencies, for extraordinary circumstances, cataclysmic events you can’t anticipate. Therapy is normal, ongoing care for kids with special needs; thus, insurers shouldn’t have to pay for it unless they want to. And the government certainly shouldn’t be putting a mandate on them. It’s the responsibility of the families to provide for their children what they think is important. He understood how tough this was for families to accept, but nonetheless that was the way it was.

I’m sure you can appreciate why I hit the roof when I read this email. Never mind that raising a child with special needs is extraordinary circumstances and something you often can’t anticipate. I had the good sense not to respond at all, because there wasn’t one polite thing I could have said. But believe me, I’ve composed many, many responses in my mind. And the more time passes, the more convinced I am of the grave flaw in his argument.

Because this man calls himself prolife—by which he means that he believes abortion is wrong. But respect for life is so much bigger than abortion. It’s an attitude that should permeate all of life, in all its forms and manifestations. Prolife politicians are very good at being outraged by the systematic termination of “imperfect” children. But if you’re going to ask people to shoulder the responsibility of caring for children with disabilities, you can’t abandon them once the child is born.

Missouri has a great program called First Steps, which provides these services. But in rural areas, it’s hard to find providers to come to the home. And First Steps ends at age three, after which kids enter the school system. We’re lucky—we have a great early childhood program where I live. But we’re in an urban area. What about families in small towns without the resources to provide for kids through the schools?

When I was serving on the Children’s Therapy Act committee, we heard stories of people who had to sell their homes to pay for their kids’ treatment, people who deliberately stayed in low-paying jobs so that they would qualify for Medicaid, which does cover these therapies.

How dare politicians stand on a soapbox, claiming that all life is precious, that children with disabilities have a right to live, and then turn their backs on families who actually have them? Do they not realize that, unlike insurance companies, parents can’t negotiate reduced rates? Do they not realize how crippling the expense of therapy becomes? Or do they just not care?

Political philosophy is all well and good, but it cannot be so rigid that it leaves behind those it purports to serve. I happen to think that minimizing regulations is a sound principle—within reason. But the reality is that power companies aren’t going to implement environmental reform if it’s going to cost them money. CEOs aren’t going to give up their huge bonuses just because the economy’s rough on the little guy. Some things MUST be mandated, or they won’t happen at all.

Doesn’t it make more sense to get these kids the treatment they need to become productive, (tax-paying) members of society? And if we don’t, if we shove the disabled population into a corner, behind a wall where their lack of function doesn’t make everyone else uncomfortable—if we don’t show them the respect they are due as human beings by providing them the tools necessary to integrate into society—then how can we be horrified and outraged by the eugenics of aborting the “imperfect”?

I share this example today in the hope that it will open people’s eyes to the many ways besides abortion in which life is disrespected. We’re accustomed to hearing about certain issues: death penalty, abstinence education, end-of-life issues—but respect for life is everywhere, all the time, in every single issue we face as voters. As we head into an election cycle, I beg you: challenge your candidates to man up and be consistent. If you’re going to respect life, you have to respect life in all its forms.

“Demanding and even tiring”

I’ve been swamped lately with other professional obligations, and Intentional Catholic has had to take a back seat. When I came downstairs this morning, I knew I needed to dig back into Fratelli Tutti, but I was not prepared for the section I was reading to speak so powerfully to the event coming up next Sunday.

March 21st is World Down Syndrome Day, chosen because Down syndrome, or Trisomy 21, is THREE copies of the TWENTY-FIRST chromosome.

For fourteen years now, Down syndrome advocacy has been a driving force in my life. I was not prepared to be a special needs mom. Having grown up in the pro-life movement, the moment when I had to confront my own distinctly un-pro-life reaction to the news was a pretty bruising collision with the mirror.

The point Pope Francis makes in this excerpt really hit home after a decade and a half of mighty struggles on behalf of our daughter. “A demanding and even tiring process,” he calls it, and let me tell you—you have no idea just HOW demanding and tiring.

But he’s right: this demanding and tiring process DOES contribute to the formation of a conscience capable of acknowledging each individual as unique and unrepeatable. I would not be where I am today, in my growth as a Christian, had God not placed this precious gift in my womb, forcing me to look in the mirror and recognize a host of inconsistencies between what I claimed to believe and how those beliefs conflicted with other deeply-held convictions about how the world was “supposed” to work.

I will never be done grappling with my profound failures around these issues, but I am grateful for the gift of my child, who to this day stretches me beyond what I think I am capable of.

For the next week, leading up to World Down Syndrome Day, I will share here some of the reflections I’ve written or presented over the years as I wrestled with all this.

Putting a face on the reason masking is our Christian call

We had two altercations with people over masks last weekend.

First of all, let me say that I try very hard not to go out at high traffic times. But when one’s husband works full time and you have things you need to do together, sometimes there are only high traffic times.

I’ll just describe one of our interactions. I asked one man who had his gaiter hanging around his neck to please put on his mask. He responded by rolling his eyes. Let me tell you, it’s quite something, seeing a 60-something white man roll his eyes like a teenager. He muttered something about not living in a communist country, or something equally (pardon my bluntness) idiotic and totally at odds with both Christianity and reality.

It’s mind boggling, how wearing a mask to protect the health of others got twisted into a political wedge. A few months ago a fellow Catholic on Facebook posted that it really bothered her that the Church had “bought into” the narrative that brotherly love required us to mask and distance.

I was dumbfounded.

So I’m here today to put a face on “brotherly love.”

This is my daughter. She is charming. She loves to sing. She loves to dance. She loves babies and ice cream and pasta. Since she was a toddler, she has had an uncanny ability to enter a room and instantly zero in on the one person who most needs the love of God. She goes to them and loves them.

Wherever she goes, she brings joy and love. She brings God, in other words, without ever speaking a word about it.

She also has Down syndrome.

When she was six weeks old, she contracted RSV. She had floppy airways and a heart defect that caused her blood to spin instead of properly oxygenating. She spent more than a week on a ventilator. For children that age, 93% oxygen saturation is the threshold for hospitalization. Hers dipped to the 40s every time she had a coughing fit. The doctors told my husband to “prepare himself.”

At 6.5 months, she had heart surgery to repair her heart. They stopped her heart. Put her on a heart-lung bypass. And she was on a ventilator again.

We thought that would be the end of respiratory issues, but it wasn’t. At 2.25 years, she developed pneumonia and was in the ICU, on a ventilator, yet again.

Since then, she’s been very healthy. My rational mind tells me she’d probably be fine if she got COVID, but the fact is that her airways are naturally floppy, and now they’re scarred from multiple trips down ventilator lane.

My daughter puts a face on the reason for masking. We make this sacrifice in order to protect the most vulnerable among us.

Nobody likes masking. Nobody likes being forced to hold loved ones at a physical distance. Nobody likes any of this. But if that’s what it takes to protect the life and health of others, then that is the Christian call.

Being Catholic in a Messy World

This past summer, I was honored to be invited to speak at the National Association of Pastoral Musicians national convention. Among the presentations I gave was this one, “Being Catholic in a Messy World.” I was asked to give a fifteen-minute reflection on what I mean by “Intentional Catholic.”

I have so many thoughts, I never imagined it would be a difficult talk to write, but it was–because the topic is so huge. The through-line that eventually emerged was how I wrestled with being “pro-life” in the wake of giving birth to a child with Down syndrome. I’ve often said that my daughter’s birth was the earthquake that changed everything for me, though I didn’t know it at the time. This is that story. It encapsulates many of the difficult issues we’re wrestling as a nation (badly). I hope you’ll set aside a quarter hour to listen!

(Thanks to GIA Publications, my music publisher, for making this available.)

In Which I Wrestle With Race

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I was so clueless.

I went to a park to meet a friend and her son, my godchild, to social-distance celebrate a birthday. She was upset, and I didn’t immediately realize why. She had to lead me almost all the way there.

I have rarely felt the privilege of my own skin color so keenly.

Because unlike me, she and her son are not white. And while the events of the past week, beginning in Minnesota and spreading all over the country, are a source of grief to me, for her they are inescapable realities that she has to wrestle with on a daily basis.

What is the future for her child? For all her male loved ones? Can they not go running in their neighborhoods? Do they really need to be afraid every time they see a police officer?

We rarely recognize how deeply our unconscious biases affect us. How many ways we have taken worldly values (self-reliance, personal responsibility, small government, and money, always money–it’s my money, no one has a right to it, especially a central authority, even to help lift up vulnerable populations) and tried to use our faith to justify them.

It’s not that those values are without merit. Of course they have merit. But they so easily become idols, when the Gospels make it clear that people ALWAYS come first.

Photo by Ivan Bertolazzi on Pexels.com

As my friend and I talked, I could empathize–sort of. The cluelessness of white America is, for her, something like the cluelessness I encounter about issues surrounding disability. Whenever I share a frustration I experience with institutions that interact with my daughter–health care, schools, etc.–I get pushback from people who oversimplify the situation. People who don’t understand that the pat solutions that seem so obvious to them simply don’t work. The tangled complexities of the situation are invisible to those outside it. Even those who are closest to us generally don’t “get” it, because they haven’t experienced it themselves.

Last fall I tried to explain our family’s struggles with special ed to a group of health care workers who were studying issues surrounding special needs. I thought I could tell the story in twenty minutes. At twenty-five minutes, I realized I was only a quarter of the way through, and the audience was zoning.

Even an audience of people most poised to understand really couldn’t “get” it.

So I understood, on an intellectual level, my friend’s deep frustration and woundedness. But I don’t *understand* what it’s like to be black in America. Not at a deep, visceral level, the way the black community does.

The only solution to all this is to “hear with open hearts,” as the pastoral letter from the US Bishops on racism teaches. To accept that what we cannot “get” at a visceral level is nonetheless real, and to recognize that it calls for a response from us. Not just an express-my-outrage-on-social media, write-a-blog-post response, but a “don’t blame the victim for the way things got out of control” response. A “hold my leaders accountable for their inflammatory words and lack of positive action” response. A “quit giving them a pass because they check the box on a single issue, regardless of how poorly they reflect the rest of my faith” response.

Because this cannot continue. It must change.

It MUST. CHANGE.

Culture of life: idea versus reality

Most ideas work in theory (i.e., in a perfect world). The question is, how do they interact when they bump into reality?

Take the idea of small government and low taxes: we should all be responsible for our own lives and fix our own problems. It makes perfect sense. In theory.

But here’s an example that shows things aren’t so straightforward when ideas butt up against reality.

For years, my daughter required extremely expensive orthotics to try to correct the “pronation” of her feet resulting from low muscle tone and loose ligaments. This is very common for people with Down syndrome. And when I say expensive, I mean $2000-$5000 per pair. Now, we never had to pay that bill, for two reasons: 1) we have great public insurance through my husband’s work, and 2) the county where we live has a dedicated tax to fund benefits for people with disabilities. Between those two realities, we were covered. Yay for us.

But what about the vast majority of people who have neither of those advantages? They just have to figure out how to pay $2-5000 for a pair of shoes, because individuals, unlike doctors’ offices and hospitals, aren’t allowed to negotiate lower rates with insurers.

It’s a heavy burden, and it’s only one example among many, where disability is concerned. Therapies are expensive, too. OT, PT, Speech. Heart surgery. Gastrointestinal surgery. The need for adult supervision long past the age it would normally be necessary.

You can see how easy it would be to receive a prenatal diagnosis of Down syndrome and be overwhelmed by the financial burden of raising this child. How easily these realities–which simply ARE; you can’t argue them away because they’re inconvenient–can be used to justify terminating a pregnancy. The burden is real.

This was one of the first realities that made it clear to me that the idea of small government, low taxes, and personal responsibility is not necessarily conducive to a culture of life. Sometimes, in fact, it will push us the opposite direction. This example shows how a centralized, universal health care system could, in fact, support a culture of life.

Countless Church documents over the years have stressed that government is meant to be a force for good. That it has a real role in making God’s justice manifest on earth. For generations, popes have been saying this.

But the modern counter-argument is that individuals and private charity can meet this need without requiring government intervention. So let’s take a look at how that idea plays out in reality.

First: outside of the families directly impacted, who even knows this need exists? (Did you?) How is the knowledge of that need going to reach the individuals and charities who might be able to meet said need?

But, for the sake of argument, let’s say someone does learn of the need, and creates an organization to meet it. The likelihood that they’re going to create a big charity with a wide reach is extremely low; the need is too specific. So at best, they’ll probably set up a charity that deals with their particular region. Yay for the kids in that region, but what about those in the next region over?

Best case scenario, someone else hears about it and sets up an organization there, too. Which means now we have two organizations, with two different leadership, doing the same job, competing for the same pot of charitable money. And meanwhile, the people three regions over still aren’t getting any help at all.

On the other hand, if this need were acknowledged and met through a publicly-funded entity–whether that’s something like the system in place in my county, or through a “Medicare for all” kind of national system–then we are actually being MORE efficient, because we have one administration, one funding stream, and one source.

Plus, we as a society are standing up and saying–with our pocketbooks–why yes, in fact, children with disabilities DO have value, they DO a right to be here, and to live fully.

It’s human nature to want to simplify the world, but the Gospel call has to be lived out in a messy reality. If we want to make any headway at all, we’re going to have to recognize that our ideas have to be “worked out,” as Pope Francis says, in the context of an immutable reality. That means being willing to listen to and learn from those impacted by any given issue, and to compromise with those who have different ideas on how to address the same problems.