Alex Schadenberg

Families of children with significant disabilities say their lives are enriched

Alex Schadenberg
Alex Schadenberg
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A research study that was published in the current edition of the Journal Pediatrics found that parents of children with Trisomy 13/18, conditions whereby the child has an extra 13 or 18 chromosome, indicated that the parents considered the child to be happy and found that their lives were enriched by the child.

The findings are very different than that attitude of many pediatricians towards these conditions. The Canadian Press reported:

Medical textbooks are grim and bleak about babies born with genetic codes considered “incompatible with life.” But the study says parents who have these children speak of the joy found in what is almost inevitably a short lifespan. These children, they say, can enrich a family rather than destroy it.

Recently I came across the story of Lilliana Dennis, a child who is living with Trisomy 18. After reading the heartfelt story about Lilliana and the Dennis family I responded by writing an article titled: Trisomy 18 is not a death sentence.

The research study was carried out by Dr. Annie Janvier - specialist in Pediatrics and Ethics at the University of Montreal and Sainte Justine Hospital in Montreal, Barbara Farlow B Eng MBA - patient safety Canada, and Dr. Benjamin Wilfond - Center for Pediatric Bioethics, Seattle Children’s Research Institute and Department of Pediatrics, University of Washington School of Medicine, Seattle, Washington.

The research team invited 503 parents of children who had a Trisomy 13/18 child to participate in the study. 87% of the parents responded and 332 parents (67%) of 272 children completed the questionnaire.

The parents indicated that their physicians stated to them that:

* 87% their child was incompatible with life,
* 57% their child would live a life of suffering,
* 50% their child would be a vegetable,
* 23% their child would ruin their family

.

On the positive side, 60% were told by their medical provider that their child would have a short, but meaningful life.

* 30% of the parents had requested a plan of treatment based on “full intervention.”
* 79% of the children who received “full intervention” were alive at the time the questionnaire was sent. Those children were a median age of four years old.
* The survival rates for children with “full Trisomy” 13/18 was 40% lived for at least 1 year while 21% lived to at least age 5.

Half of the parents reported that caring for a child with a disability was harder than they thought it would be and yet 97% of the parents described their child as a happy child and most of the parents indicated that caring for their child had enriched their lives.

The article in the Canadian Press interviewed Barbara Farlow, one of the authors of the study. Farlow, the mother of a child who had Trisomy 13 stated:

“We didn’t want our daughter to live on life support or to suffer. But if she had a chance to live comfortably and be happy . . . then we were willing and able to care for her, despite her limitations,”

Annie lived for 80 days. When an illness brought her back into hospital and she stopped breathing, the staff was slow to try to resuscitate her, despite her parents’ wishes. Later, Farlow and her husband discovered Annie’s medical file had a DNR — do not resuscitate — order on it, even though they hadn’t authorized it.

Dr Annie Janvier stated to the Canadian Press that:

“What we predicted as doctors happening to all these families didn’t happen,” says Janvier, who admits the findings are receiving a lukewarm response in some quarters.

“I just want to show that these kids mean something to their parents, ... And they seem like they have a quality of life that’s acceptable. Doctors are not torturing them. We’re not giving them undue pain. And they should be treated as unique children.”

Dr. Benjamin Wilfond, the lead research author in the study, told Reuters news that:

“There is a broader range of survival and experiences than providers know. The parents may be getting this information online and clinicians may need to rethink what they say to parents,”

“I think the point of our paper is to say these are quite serious conditions, but saying it’s hopeless is inconsistent with reality.”

I have known Barb Farlow and her family for several years. I have learned, through Barb, much about the lives of children with Trisomy conditions. It is my hope that society will break-through the negative bias towards children with profound disabilities, such as Trisomy 13/18. Everyone is a unique human being and people with disabilities offer other people the opportunity to accept and understand the true meaning of dignity. Hopefully this study will create new opportunities for families and the children with disabilities.

More information can be found at: http://www.trisomy.org/

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Lisa Bourne

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Archbishop Chaput: Obama’s White House ‘may be the least friendly to religious concerns in our history’

Lisa Bourne
By Lisa Bourne

PHILADELPHIA, PA, April 1, 2015 (LifeSiteNews.com) -- Philadelphia’s archbishop told a group of young men preparing for the Catholic priesthood that under the Obama administration hostility toward religion has reached an unprecedented level.

“The current White House may be the least friendly to religious concerns in our history,” Archbishop Charles Chaput, O.F.M. Cap, stated in an address at St. Charles Borromeo Seminary in Wynnewood.

With religious liberty at the top of news headlines, the archbishop spoke to the seminarians March 17 in observance of the 50th anniversary of the close of Vatican II and its Declaration on Religious Liberty – Dignitatis Humanae. He talked about the decline of religious practice in the U.S. and the various ways religious liberties are being eroded in the country, forewarning of what’s to come with the nation on its current path.

“We’ll see more of the same in the future,” Archbishop Chaput said. “Pressure in favor of things like gay rights, contraception and abortion services, and against public religious witness.”

“We’ll see it in the courts and in so-called ‘anti-discrimination’ laws,” he continued. “We’ll see it in ‘anti-bullying’ policies that turn public schools into indoctrination centers on matters of human sexuality; centers that teach that there’s no permanent truth involved in words like ‘male’ and ‘female.’”

Archbishop Chaput detailed religious persecution across the globe currently and in the past, before delving into the present climate in America.

“We’ll see it in restrictions on public funding, revocation of tax exemptions and expanding government regulations,” the archbishop stated. “We too easily forget that every good service the government provides comes with a growth in its regulatory power. And that power can be used in ways nobody imagined in the past.”

Archbishop Chaput expressed how certain terms so prevalent in American culture today - justice, rights, freedom, and dignity - are used with conflicting meanings, rendering public discourse futile in addressing truth.

“Our most important debates come down to who can use the best words in the best way to get power,” he said. “Words like ‘justice’ have emotional throw-weight, so people use them as weapons.”

Reports of Archbishop Chaput’s remarks come as the state of Indiana and its governor face tremendous hostility for its recently adopted religious freedom law.

Republican Gov. Mike Pence has spent the last few days retreating after a national barrage of attacks on the law, which mirrors that of 19 other states and was shaped from 1993 federal legislation passed by a Democrat Congress and signed by President Bill Clinton.

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Opponents claim the law amounts to state-sponsored discrimination, despite the fact its purpose is to protect religious liberty against government overreach.

In speaking to the seminarians from his archdiocese, Archbishop Chaput said we are lying to ourselves if we think we can keep our freedoms without revering the biblical vision--the uniquely Jewish and Christian vision--of who and what man is.

“Human dignity has only one source. And only one guarantee,” he said. “We’re made in the image and likeness of God. And if there is no God, then human dignity is just elegant words.”

The archbishop stressed for the young men that the faithful must live out religious liberty by practicing faith in their lives and by defending it.

“We need to remember two simple facts,” Archbishop Chaput said. “In practice, no law and no constitution can protect religious freedom unless people actually believe and live their faith – not just at home or in church, but in their public lives.” 

“But it’s also true that no one can finally take our freedom unless we give it away,” he said.

The archbishop closed by cautioning against becoming a cynic, saying there’s too much beauty in the world to lose hope.

“In the end,” he said, “there’s too much evidence that God loves us, with a passion that is totally unreasonable and completely redemptive, to ever stop trusting in God’s purpose for the world, and for our lives.”

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Rachel Lu

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Dissent trumps Faith in new ‘Catholic’ LGBT film

Rachel Lu
By Rachel Lu

April 1, 2015 (CrisisMagazine.com) -- “Human beings procreate male-female, but human sexuality isn’t just about that. It’s about so much more, which is self-evident.”

So says Fr. Patrick Conroy, chaplain of the U.S. House of Representatives, at the outset of a recently released short film promoting the normalization of LGBT lifestyles within the Catholic Church.

The film is entitled “Owning Our Faith,” which is richly ironic in ways that the director, Michael Tomae, surely did not intend. Except for Catholic writer Eve Tushnet (a complicated case, whose work has been discussed on Crisis in the past), all the featured participants clearly and openly dissent from Catholic teachings on sexuality. They are indeed interested in “owning” their faith. But the ownership they seek is of a distinctly proprietary nature.

There’s little point in trying to refute the film’s arguments as such, because there really are none. If the word “Catholic” were omitted from the audio track, almost nothing would suggest to a listener that the content of the film had anything to do with the Catholic tradition. There is no serious discussion of theology or doctrine. The quote from Fr. Conroy above is the closest it ever comes to “engaging” the Church’s teaching on sexual ethics. It’s clear throughout that the individuals featured are not interested in learning what their faith might have to teach them. As they see it, they are the teachers, appointed to remake the Church in their own image.

Thus we see Fr. Conroy lamenting that gay and lesbian Catholics cannot be “fully participating in the sacramental life of our Church.” In case anyone is unclear as to what he means (because of course, experiences of same-sex attraction do not exclude anyone from full participation in the Church’s sacramental life), this is juxtaposed against “married couple” Matt and Rick Vidal discussing why they choose to remain “faithful Catholics,” despite criticism from their LGBT friends. “We are the Church,” declares Rick, “and if we leave it, if we abandon the Church, then it’s never going to change, so we have to continue living here, being an example, and encouraging other people to be that example, because that’s what’s going to change the Church.”

Is there anything these men like about Catholicism as it is? Any reason not to seek out one of the (numerous) other communities and churches that would be happy to affirm them in whatever sexual lifestyle they might choose? They don’t say, and neither do any of the other featured speakers. Here and elsewhere, we are left with the distinct impression that most of them remain in Catholic communities primarily as a favor to the rest of us, so that we can benefit from their gifts and unique insight. A review of the film at National Catholic Reporter stated that, “Not every viewer will agree with every opinion expressed in ‘Owning Our Faith,’ but only the most rigid of believers would question the love these Catholics have for their church.” At the risk of joining the ranks of the rigid, I do indeed feel moved to ask: what do these Catholics love about their church? They don’t tell us. We only hear about what needs to change.

It’s difficult to argue with a film that isn’t working on the level of rational argument. Nevertheless, it’s worth responding to the general thrust and ethos of the film with three important points.

The first relates to the claim, made on the film’s website and in other promotional materials, that productions of this sort are created as part of an effort to “promote open dialogue” about same-sex attraction and related issues. This is exactly the opposite of their intent, and it’s important to be clear on this point. Propagandistic videos of this sort are intended to bypass, or even to shut down, any real or serious discussion of the moral dimensions of same-sex attraction.

In a dialogue, morally relevant issues are stated clearly so that they can be analyzed and considered. What we have here is a long string of emotional appeals. “My gender transition was immensely spiritual to me,” says Mateo Williamson, who self-identifies as a transgendered man. “Sexuality is how we express our inner soul, our inner energy,” enthuses Mike Roper who self-identifies as gay. In a particularly shameful piece of emotional blackmail, grandmother Nana Fotsch urges parents of same-sex attracted Catholics to accept their children’s declared sexual identity and related lifestyle choices or “you’re going to lose them.” (Don’t all of Christianity’s hard teachings have the potential to alienate us from loved ones? Shall we just jettison the whole Catechism right now? Our Lord has some rather stern words about those who prioritize family relationships above the truths of the Gospel.)

Though there’s nothing Catholic about its message, Owning Our Faith pursues a strategy that is entirely consonant with a larger (and thus far, remarkably successful) progressive project. Don’t try to win the argument about sexuality and marriage. Play for sympathy. Appeal to emotion. People today are so thoroughly confused about sex and marriage that they have few defenses against an onslaught of politically loaded sentimentalism. And you can’t lose an argument that you never have.

This leads us to the second important point. Uncomfortable as it may sometimes be, loving people just doesn’t entail approving everything they do. Neither should we accept anyone “exactly as he is,” because of course all of us are sinful, fallen and in need of transformation by grace.

This is not a message that these “owners of faith” want to hear. Katie Chiarantona, one of the film’s representative “straight” contributors, sums up the film’s prevailing view even more neatly by declaring that she cares enormously about the place of homosexuals in the Church because she has many LGBT friends and, “it is unconscionable and unthinkable for me to support an institution that doesn’t celebrate them and encourage them to live fully as who they are.”

Who among us can really say with any confidence that we know who our friends (or we ourselves) really are? This is a dangerous conceit. None of us here below have yet realized our perfected state. Most of us, I expect, still have a significant way to go. But progression towards supernatural fulfillment is not possible if we begin by issuing ultimatums to God about the conditions under which we will accept divine grace.

Such an effort brings to mind the parable of the wedding banquet, in which a king invites all and sundry (including the poor and commoners) to his son’s wedding, but ends up evicting one guest owing to a lack of appropriate wedding attire. Quite obviously, the king in the story is not a philistine when it comes to standing on ceremony; he’s just ushered the local riff-raff into the most formal of state affairs. Nevertheless, the guest who refuses to dress properly is forcibly removed. Clearly there is a lesson about the importance of accepting grace on God’s terms, and not our own. All of us are welcome at the Lord’s table, but we may not simply come as we are. Being Christian means looking for faith to change us, not the other way around.

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This leads to the final point. While there is some space for discussing the appropriate pastoral response to deep-seated same-sex attraction, the Church’s broader position on same-sex attraction is perfectly clear. It is intrinsically disordered, and homoerotic relationships are immoral. There is no reason to think that this teaching can, should, or ever will change. Quite the contrary, once one understands the Catholic position on sexuality, it becomes clear that it cannot possibly be tweaked in such a way as to allow disgruntled LGBT activists the affirmation they seek.

Fr. Conroy’s position, as stated in the opening quote, is a straw man. Of course no reasonable person supposes that sexuality is “only about” procreation, if by that we mean that sex should be viewed in a coldly clinical light as a utilitarian means to achieving pregnancy. Clearly, erotic love involves far more than that, and how could it not, given the magnitude of what procreation really is? To even begin to do justice to that tremendous good (the begetting of immortal souls and perpetuation of the human race) erotic love must be a noteworthy thing indeed.

However, the Church has consistently maintained that erotic love, at least among mere humans, must be ordered towards procreation. Every effort to slice and dice the relevant pieces of the conjugal package into more-palatable portions (by sanctioning sex without marriage or marriage without permanence or erotic relationships of multiple sorts that are intrinsically closed to life) has been rejected by the Church, and for good reason. Embracing the life-giving nature of sex is the key that enables Catholics to articulate a noble, elevated and meaningful portrait of erotic love, which makes sex into something more than a tangled mash-up of bodies and emotions.

The conversation that dissenting LGBT Catholics (and their “straight allies”) want to have is already over. On some level they know this, which is why they seek sympathy instead of engagement. But there is some good news. For those who really do love their Church, full participation in its sacramental life is always available. They need do only what all Catholics are expected to do: stop trying to fix our faith, and pray instead for it to fix us.

Reprinted with permission from CrisisMagazine.

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During his political days, Andy and his wife Angela with George and Laura Bush
Andy Parrish

On the fast track to political stardom, recent LSN hire gets more than he bargained for…

Andy Parrish
By Andy Parrish
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Andy Parrish

I’ve been a Chief of Staff to Rep. Michele Bachmann, I’ve managed multiple Congressional, Senatorial and Ballot Initiatives, some would say I’ve even ‘made’ members of Congress.

I’ve been a Senior Political Advisor to a Presidential candidate and I’ve sat across from President George W. Bush and advised him on political matters.  

I did most of that by the time I was thirty-three. I was on the fast track and no one was going to stop me.

Well, Jesus had other plans for me.

Even though I was on the fast track to the top it came at a significant price. I was putting me first and my family second.  

That’s not what Angela had signed up for when we got married and it’s certainly not right for my children. Nor is it the way God designed marriage.

After suffering a few defeats, I made the decision I didn’t want to be in politics anymore. But it was all I knew how to do so I started my own business and Angela kept encouraging me to seek out contracts in areas that I was most passionate about.

I was looking for contracts and stumbled upon an opportunity at LifeSiteNews.com that I never would have expected. I’ve been passionate about the life issue since I was three years old. My first memory in life was outside of a Planned Parenthood abortuary.

Providentially, a few weeks later I was on board. I thought it would be a simple job, you know one of those that you didn’t have to invest much into.  

I was wrong.  Dead wrong.  

It only took a few days for me to realize that this isn’t a job at all: this is a mission.

What amazed me most is these people just don’t talk the talk. Every one of them walks the walk, and they all put their faith and families above anything else.

Since starting work at LifeSite, I have followed the example of my co-workers and I’ve learned to show my family how much I love them by putting them first again.  

At LSN we start everyday and most every meeting with either a devotion or prayer (of course it’s voluntary).  We pray for you the readers of LSN, we pray for our supporters, we pray for each other and we pray for the success of LSN.

I’ve also found that LSN isn’t about any one person, it’s about a mission and it is larger then anyone who works here. We all trust that Jesus will continue to make LSN successful and will continue to be a blessing to our families and to you.  

LSN has given me so much.  They’ve given me my priorities back, they’ve given me more than I can ever give them and I am just one story.

I ask that you continue to pray and support the mission of LSN. We are changing hearts and minds with the truth and we are changing lives. As we end our Spring campaign, I hope you will consider clicking one of the donate buttons on our site to help us reach our goal.

Andy Parrish, Public Relations and Media Specialist for LifeSiteNews

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