#cchd

The church is called to come out of herself and to go to the peripheries, not only geographically, but also the existential peripheries: the mystery of sin, of pain, of injustice, of ignorance and indifference to religion, of intellectual currents and of all misery.

With this opening quote from Pope Francis my colleague, Dr. Meghan Clark, shares her work in this American magazine article. As part of the North American Working Group for the Vatican’s Dicastery for Promoting Integral Human Development Dr. Clark was tasked with a research project for the synodal process. The research consisted of going out to the “existential peripheries” in order to capture the voices of marginalized groups and their responses to the synodal questions.

In this article you will see how Dr. Clark, a recognized expert within the Catholic social tradition, incorporates the recent teachings of Pope Francis to set the context for this project. With a certain academic humility (not always found in the hallowed halls of academia) she knew where to look to help find the "existential peripheries" in North America and also to find those who journey with and have come to relate with these communities.

That is perhaps why I chose to enter the field of social ministry, if my research and service was going to be with the people of God who were socially marginalized then I felt that I needed to be present in order to minister to their social needs. With the asylee and refugee communities I have been able to capture many of their stories which, for me, captures the richness of lo cotidiano, the lived context for why this community is here and how they got here. This was the meta-narrative that I used in a recent engagement with a conservative Catholic banker who wanted to know why our Church feels called to welcome drug dealers and rapist. Evidently this person has bought into an opposing political narrative that is not actually based on the encounter with this targetted population. My counter to her narrative was to share the actual stories of those we serve.

I had the privilege to join Dr. Clark with the conversations that we had in Brooklyn and Queens. It was a very humbling experience. This for me is always the case, to receive someone's story is a sacred moment. That is what the culture of encounter is all about. When someone is willing to trust you with their story they are opening themselves to you, the listener. They are allowing themselves to be vulnerable to the other. This is a deeply intimate (and thus sacred) moment. That is moment that an authentic encounter occurs.

The stories that I heard during this process were stories of faith. This is a consistent message that is found with many who research the migrant communities. The theological findings that Latino Theologians like Virgil Elizondo or Roberto Goizueta captured in their respective books, "Galilean Journey" and "Caminamos con Jesus" is once again captured in this research.

Though I met those who felt abandoned by their fellow Christians or excluded by the Catholic Church, I encountered no one who felt abandoned by God. “When you have faith, anything is possible,” noted a young migrant mother from Guatemala. In Ciudad Juarez, I met migrant women from many places who all euphemistically referred to “difficulties” when mentioning the ubiquitous violence experienced on their journey. And yet I heard some version of the same assertion several times: “God hasn’t abandoned us because we are here.”

Their spirituality is an implicit recognition that God is with them in their journey. This is a guiding theological principle for this community. Although they may not have any formal Ignatian training the spiritual belief that one can find God in the encounters of every day life is certainly something that would resonate with the theist of this community. And even those who disown any formal religious/spiritual perspectives often are able to recognize blessings along the way. There is certainly much we can learn from the faith and spirituality that guides this community.

I am thrilled that the synod process was attentive to these voices. It is consistent with the teachings of Pope Francis and his call to promote a culture of encounter. It was an absolute privilege to be invited to assist in this process. Josefa's story and experience with the recycling community is one that I shall not forget.

CCHD Economic Development Grants, supporting the development of worker owned cooperatives.

On the weekend of November 12-13, Catholics across the United States have the opportunity to honor the World Day of the Poor and help their neighbors who struggle against poverty by giving to the annual special collection for the Catholic Campaign for Human Development (CCHD). The USCCB has a message they released for the month of November promoting this collection and this Catholic ministry supporting community organizations and local business opportunities that support low-income communities.

In this video message Pope Francis reminds us of the great work that small businesses do to help support a functioning local economy that serves the community.

The ones that invest in the common good instead of hiding their money in tax havens, they all dedicate an immense creative capacity to changing things from the bottom up, from where the best creativity always comes from. With courage with effort, with sacrifice, they invest in life, creating wellbeing, opportunities, and work. 

The CCHD Economic Development Grants are efforts by the American Catholic Church to support local business ideas that serve to empower a marginalized population. These are defined as “community-based organizations and businesses that create just workplaces, provide good jobs and develop assets for low income people that are owned by families and communities.” Worker owned businesses are a specific type of economic projects that we are hoping to support through these grants. These are companies that serve the local community while providing meaningful jobs that help a specifically marginalized community receive opportunities, skills and economic stability. 

Workforce Development Programs are an essential way to support the economic development of a migrant community. Immigrants, undocumented or otherwise, are almost always looking to enter the workforce in order to find stability for themselves and their families. These programs offer training, certifications and networks that help these communities prepare, find and legally protect themselves. Establishing workforce cooperatives are another way to support the economic development of migrant or low-income communities. These are cooperatives where workers not only contribute their labor but the participate in the financial success of the coop through some form or representation on the board of directors. 

Poverty USA and the Catholic Campaign for Human Development

The mission of the Catholic Church and the Christian faith has always been to build up the Kingdom of God. This is the central teaching of Jesus. Through his healing and feeding ministries he taught us all that the Kingdom of God is a place where God brings justice and peace to the community. Where the basic needs are meet by God through one another's action and in this Jesus lead the way by his own example. Jesus himself begins his public ministry with a specific prophetic reading from Isaiah:

"The Spirit of the Lord is upon me, because he has anointed me to bring glad tidings to the poor. He has sent me to proclaim liberty to captives and recovery of sight to the blind, to let the oppressed go free, and to proclaim a year acceptable to the Lord.” -Luke 4: 18-19

The Catholic Church's tradition has always been to serve this mission by responding to the spiritual and social needs of the community. In his World Day of the Poor message Pope Francis offers the following recommendation.

There is an urgent need to find new solutions that can go beyond the approach of those social policies conceived as “a policy for the poor, but never with the poor and never of the poor, much less part of a project that brings people together” (Fratelli Tutti, 169). We need instead to imitate the attitude of the Apostle, who could write to the Corinthians: “I do not mean that there should be relief for others and pressure on you, but it is a question of a fair balance” (2 Cor 8:13).

Those of us who work with the poor and low-income community recognize that poverty is indeed a web. In the aftermath of the pandemic we now face inflation and the rising cost of housing. Threatened cuts in social services and education will only exacerbate this insidious web. It is good that we are giving food and offering emergency financial assistance but this is simply not enough.

The Catholic Campaign for Human Development is a national project that Catholic Charities of Brooklyn and Queens manages locally. This project allows us to fund initiatives from community based organizations that empower low-income and vulnerable communities to address issues that they recognize affect them. These projects reflect the values of our Catholic social teaching on the dignity of the human person. They look at changings social structures and policies that undermine these vulnerable communities. A few years ago I profiled a couple of our CCHD funded organizations, Sure We Can and Church United For Fair Housing (CUFFH). Sure We Can organizes the recycling canner community and provides them financial protection and services that assist their economic development. CUFFH advocates for low-income communities that feel the pressure of rising housing costs and gentrification. They specifically work with Churches to organize the low-income community that struggle with affordable housing issues. This year we are looking at other programs that also empower vulnerable young adult and immigrant communities. We hope to profile these groups later this year.

The Global Solidarity Fund: Appealing to a Christian Economic Model.

Your name, Global Solidarity Fund, is centred on a key word: solidarity, a core value of the social doctrine of the Church. Yet in order to make this word a reality, it needs to be accompanied by closeness and compassion for others, for people who are marginalized and for the faces of the poor and migrants.

On May 5th Pope Francis welcomed the Global Solidarity Fund. This fund reminds me of national version of the Catholic Campaign for Human Development. These funds look to financial assist programs of community or economic development that brings marginalized communities out of poverty. The Vatican News article above goes into this message. In welcoming this group and celebrating one of their economist Mariana Mazzucato, who has been working on promoting a communitarian economy, Pope Francis went on to also articulate his vision for the economy.

Then, the name of your group: also looking for a new type of economy. The economy must be converted, it must be converted now. We need to move from the liberal economy to an economy shared by the people, to a communitarian economy. And enough work is being done on this with young economists, including women. For example, in America, there is Mazzucato who has taken a step forward in thinking about the economy, and there are other very talented women. We cannot live with an economic pattern that comes from the liberals and the Enlightenment. Nor can we live with an economic pattern that comes from communism. We need a Christian economy, let’s put it this way. Look for new expressions of the economy at this time: I mentioned Mazzucato who is the daughter of immigrants in the United States, but there are others. In England there is another woman, and there are also men who are thinking of an economy more rooted in the people.

This Christian economy is very much what some authors have been calling the third way between capitalism and communism which I recently wrote about. Pope Francis has been promoting this for some time now in a model that sometimes is called the "Economy of Francesco" which has been developing since the encyclical Fratelli Tutti offered some further insights into the issues of the economy within the principles of Catholic social teaching.

Traditionally Catholic social teaching has raised Distributism as the third way economic model that seriously considers the principles of solidarity and subsidiarity as essential for a well functioning state and global economy. In promoting solidarity distributism recognizes the role of the state in regulating the market in order to promote the common good of society. In promoting subsidiarity distributism also recognizes the importance of free commercial/market activity and individual and family initative. However the blend of solidarity and subsidiarity also recognizes that this model (distributism) will work best when the individual/family level has a concrete ownership of local economic activity. In distributism this ownership includes both labor and capital. Distributism is the model of worker cooperatives, an economic model that copies the democratic system so that the state and market keep each other in check from encroachment by the other while each individual/family is organized as a real stakeholder to the local economic activity through their productivity (labor) and market-share of the profit (capital). It looks to me that Pope Francis would have us seriously consider this economic model.

About a month and a half ago Raphael’s cardiologist said that the rate at which his conduit was narrowing was beginning to become concerning, so he wanted him to be discussed at the weekly “cath conference,” a meeting where the surgical team determines whether a child is in need of a catheter procedure or not. They determined that Raphael was.

So, tomorrow morning at 6:15, Raphael is scheduled for a cardiac catheterization. They’ll send a catheter up his femoral artery and into his heart. There, they’ll take pictures and measurements in order to get a better idea of what’s happening. If they deem it necessary, they’ll try to balloon (angioplasty) his conduit and/or place a stent (a small mesh metal cylinder) to widen the conduit and ease the blood flow through the heart. If it works, this should buy Raphael some time before his next surgery. If it doesn’t work, or it doesn’t work well, we’re probably looking at his second surgery sometime soon.

Needless to say, we’re all a little on edge here. We know lots of families who have gone through this, and problems are rare. We’ll likely stay one night in the hospital and then go home. Raphael might have a little pain in his leg for a day or so, but that should be about it. I’ll try to update the page to let everyone know the outcome/prognosis. Oh, and also, he started walking the other day. It’s adorable.

Today is Raphael’s “heartiversary,” the anniversary of his first open heart surgery. Over the last few days I’ve been remembering the events of this time last year. On the 18th, Lyndsay’s water broke and we went to the hospital six weeks early. 12 hours later, Raphael was born. And then time gets muddled. His oxygen level was low so they took him to the NICU and we were taken to a room. A cardiologist would be coming by soon. Tired as I was, I didn’t understand what a cardiologist had to do with low oxygen. We took a nap. The nurse came in and turned the light on. She said the cardiologist would like to speak to us. He had a piece of paper and he sketched a “normal” heart next to a heart with truncus arteriosus. Our son would need surgery. And later he would need more surgeries. CHOA in Atlanta would be notified. A team would come to transport our son the next morning. We could meet him there. We tried to sleep. We watched the transport team put Raphael into a portable neonatal intensive care unit. We drove home to collect some clothes and food. We drove to Atlanta.

The next two days seemed like weeks. We spent an uncomfortable night in the hospital at CHOA. They would try to let our son grow a bit. It might take weeks. We tried to ask questions. We tried to contact family and friends. We tried to spend as much time with Raphael as we could. We met other families going through similar circumstances. We met families whose circumstances were much worse. At some point the cardiologist told us that the surgery might be sooner; maybe later in the week. We slept at my sister’s house. We went back to the hospital. They said the surgery would be the next day.

A year ago today we waited for a phone call every hour or so. The surgery team would update us as the surgery progressed. The double aortic arch was repaired. The ventricular septal defect was patched. His single aortic trunk was repaired and was now the major artery that carried blood to his body, and a 9mm conduit with a valve was attached as his new pulmonary artery. The surgery team lead by Dr. Bahaaldin Alsoufi was amazing and Raphael survived.

Over the next few weeks Raphael underwent a minor surgery to close his chest and struggled with a partially collapsed lung before he was finally weaned off a number of medications. We were transferred to the Step-Down unit where we would learn more about administering his medications and inserting and removing his feeding tube. We went home, after some breathing issues returned to Step-Down for a few more days, then we were finally released. With the generous help of Raphael’s Savta, Lyndsay and I managed to get some sleep over the next couple of months, and with the generous financial support of many, we were able to stay home for much of the spring and summer to care for Raphael. We weaned him off of 7 of the 8 medications he was on (he’ll always be on aspirin), took him off the feeding tube in late spring, and we moved him from high calorie to normal baby food in the early fall. All this time, the visits to doctor’s and specialists became fewer. From 3-4 visits a week in the early spring, to 2-3 a month now.

About a week ago we saw his cardiologist and his echocardiogram showed that as his heart has grown, his replaced conduit has narrowed, allowing his heart to function at about 60%. On January 9th, at the weekly heart catheter meeting at CHOA, the surgery and cardiology team will discuss what the next step in his care will be.

Meanwhile…

He’s turning into an awesome little human. He’s cruising along the couch and will be walking any day now. He enjoys throwing spaghetti across the room and taking his toys apart and putting them back together again. And his favorite thing is our daily walk around the apartment complex lake where he alternatively shouts “tree” and “truck” (clearly, we live in the South). We still don’t take him out much as it’s dangerous for him to be around sick people, but we all went to the aquarium for his birthday and while he enjoyed the fish, he really loved all the lights that were set up for the holidays. And once a week we take him to a music class where he occasionally leads all the other babies on excursions to explore the walls of the music room.

Still meanwhile…

We try to say that he’s basically a normal kid, but the caveat is there for a reason. Between not knowing when his next surgery or heart catheter will be, the complications that could arise during those procedures and the numerous complications that could arise at any point, it’s a wonder that Lyndsay and I have even a bit of sanity left. Add to that both of us maintaining our careers without the aid of day care (but with the aid of a part-time nanny and weekly help from Raphael’s nanna), and we often feel like we’re teetering on the edge. But, like most families with a CCHD kiddo, we’re doing our best to make it. Raphael spends most of his time smiling and despite being 6-weeks early and spending his first month confined to a hospital bed, he’s developmentally right where he should be for a 1-year old. And as a family, we still manage to be kind and loving to each other, to recognize when someone needs to eat or take a nap (clearly not just talking about Raphael here), and to provide the care and comfort that we all need. It’s been a tough year, but we’re growing stronger each day. Thank you for reading and for your continued support. And for those of you who haven’t met Raphael in person yet, he’s excited to sit down and share a meal with you, provided you bring a tarp.

Failure to thrive (FTT) is a medical designation for someone who shows insufficient weight gain or inappropriate weight loss. For most of his life so far, Raphael has been designated as FTT. During the last couple of checkups though, Raphael has not been designated FTT, which was awesome. He was eating more than he was scheduled to and we were hopeful that at the next checkup he'd be moved from the fortified formula to normal baby formula. After the last couple of weeks, however, we think it's more likely that he'll be going the other way, and that we'll have to increase the calories per ounce we feed him even more.

When we first heard the term FTT, we were a bit incredulous, and with good reason. I mean, look at this kid! He spends most of the day smiling, he’s become a tummy time master, has unlocked the secrets of rolling front to back, laughs when we sit him up, and is getting to the point where he can support his own body weight!

He is gaining weight and CCHD kids tend to be smaller than their non-CCHD friends, so the fact that he's not gaining as quickly anymore or that he's more sporadic in how much he eats everyday seems par for the particular course we’re playing on. Compared to other CCHD kids, Raphael is thriving just fine. For example, last week we took him to the neurologist after our pediatrician expressed slight concern over Raphael's flat spot on his head and some of his gross motor skills. After a horrifying display of bending and turning Raphael, and flipping him this way and that, the neurologist handed us our screaming child and said “for the most part, I think he's fine!” There are a couple of things we're on the lookout for, but developmentally he's pretty much where he should be.

But the more I think about the term, especially as it applies to a baby, the more appropriate it seems. Because as Raphael continues to grow and learn, our family is doing all it can to simply make do. Because his eating habits fluctuate, and because it's so important for him to get all the calories he can, we have to do our best to make sure he doesn't spit up. So between holding him up after he eats, and just getting him to eat in the first place, we might spend an hour or more at each of his seven or eight feedings during the day. Time that would be better spent taking Raphael to the park, or working on his motor skills is often spent just making sure he keeps his food down. And this is to say nothing about the anxiety that this provokes.

The combination of the physical time it takes to do things like feeding, going to doctor's appointments, and preparing and giving medication, combined with the anxiety of trying to do our best, wondering if we could be doing better, and simply being so uncertain about when his next surgical procedures will be makes it incredibly difficult for us, as a family, to thrive.

Over the last few weeks, as the Spring semester ended and as we've begun trying to figure out what's going to be best for our family once classes begin in the fall, I've been trying to think of the things we would need to move beyond simply making do1 and finding ways for our family to actually thrive. For me, there are three things I would like, and I think that with two of the three, we would be able to thrive as a family. First, we need to have a supportive and loving relationship. We are fortunate that through all the stress and anxiety, our relationship remains strong. Second, we need to have our health. This will always be a concern for us and I think the best we can get will be to manage Raphael's condition in a way that becomes routine, which we're working towards. The problem is that when other things get factored in, our health becomes more difficult to maintain. My own health has been suffering of late (not something life threatening, but I've been managing near constant pain since before Raphael was born), and any health problem is exacerbated by anxiety. So we're trying to accept that we will rarely, if ever, feel like we are a physically healthy family. Third, and finally, we need to have a stable living situation. Right now we each have a very long commute to work, we live in a city that neither of us like with no local social support network2, and we live in an apartment with poor management. We make a decent salary, but until we find a way to manage our living situation better (because day care is not an option3) a good chunk of that salary will go to childcare costs and/or one of us significantly reevaluating our career. So it's going to be difficult for us to move beyond making do.

This post has been partly written for a few months now, but I've been hesitant to post it as I'm generally a positive person and think that I can usually find ways to barrel through whatever adversity I face. Over the last couple of months, however, I've found that this is not one of those situations. After speaking with many other CCHD parents, I know that we are not alone, and that failure to thrive is more of a family diagnosis than anything else. So for now, this is where we stand. I also have a much more fun post in the pipeline that will be ready soon. Thanks for the continued support.

1I write this knowing that many families going through something like this fail to even make do, let alone thrive. While we were at the hospital, we received care packages and meals from families, like ours, who learned to thrive despite everything, and our hope is that once we find stability, we will be able to give back in the same way that people so generously gave to us.

2For those familiar with the Atlanta area, we live far enough outside the perimeter where it is a hassle for friends and family to make the trek out here, and Raphael has not yet been given the go-ahead to be out and about at his leisure.