Tuesday, December 16, 2014

Let Your Light Shine Before Men

We went to Massachusetts Eye and Ear Infirmary in Boston yesterday for my semi annual checkup. After receiving wonderful news from the surgeon who treated my ocular melanoma, my daughter Gabbi took me to lunch at a Thai restaurant in Boston's elegant shopping district.

We were surrounded by the artsy crowd from Berklee School of Music which was across the street. It reminded me of my college days in Manhattan, when I frequented the cafes of Greenwich Village. Only in those days, I cared about impressing that self-important crowd. Gabbi, a wise college senior, knows better. she just laughs at their pretensions and was shocked to see how much food they waste. Her mission work in Ecuador has given her a new perspective on our wasteful lifestyle in the West.

After lunch, we spent a few minutes at the feet of the King of the Universe at perpetual adoration at St Clement's Shrine. A dozen people of all ages and walks of life sat enveloped in prayer in that starkly beautiful, traditional brick church with a marvelous carving of angels around the Monstrance on the Altar. Traffic roared all around us but the absolute peace of being in the Real Presence was overwhelming. We soaked in grace like solar lamps, only to give it off later as we joined the Christmas shoppers on posh Newbury Street. 

At first we thought we blended in, after all we dressed up to come to the city, but soon we discovered that we stood out of the crowd, and that Jesus might have something to do with it. Two people spontaneously remarked on how much we looked a like, one was an effusively charming man who was sweeping the street, and said to Gabbi, "Young lady, I can see where you get your beauty from,  your mother." Another mother and daughter practically  tapped Gabbi on the shoulder asking directions to the Prudential building. We were happy to be able to give them, pointing to the sky where the building towered over us. Gabbi remarked, "Mom, there were a dozen people at the corner, I think she chose us because we looked approachable, I think its because of Adoration!"

That was not all. We were looking at an expensive handbag we couldn't afford in Fossil, and the salesman gushed over our less than skinny figures. "Thank you ladies for having healthy figures, so many women come in here looking like sticks!!" How did that gentleman (on the skinny side himself), know he could give such an unusual compliment without being rebuffed?

It seems that when you immerse yourself in Jesus, even for a moment,  you become irresistible to those who seek Him even if they do not know Him by name. It was a honor being His unwitting emissaries yesterday. May we always be mindful that we might be the only Gospel those people will ever read.

Thursday, December 11, 2014

Review of The American Catholic Almanac

The American Catholic Almanac: Daily Reader of Patriots, Saints, Rogues, and Ordinary People Who Changed the United States
Image Books, NY
Emily Stimpson and Brian Burch

Back when political correctness was in its infancy, I was a Catholic student in public high school. My instructors seldom missed a chance to malign the Catholic Church for her so-called injustice, ignorance, and intolerance. Thanks to them, I learned a lot more outside that class than in it: I had a Jesuit priest in my local parish help me find information to refute those spurious claims. It took a lot of work and many books to find the information I needed. My teachers had an all-too-familiar agenda; to make Catholics ashamed to live their faith publicly.
 Since the seventies, this toxic agenda has spread throughout education, the media, the marketplace, and the government. Planned Parenthood has a new campaign which openly tries to slander politicians who support the culture of life, many of whom are faithful Catholics, as “unfit” for public office. We have seen Supreme Court Justices and politicians abandon their Catholic values and most Catholic institutions of higher educations’ course offerings and graduation speakers’ resumes would be scandalous to their founders. Where can the busy non-scholar who must be educated in these hostile environments find a reliable, readable source of information?
The American Catholic Almanac is a daily digest of stories about 365 Catholics who made an impression in American history from colonial times when being a Catholic was dangerous, to our majority Catholic Supreme Court. Not all of the people whose stories are told in the Almanac are as saintly as Venerable Pierre Toussaint. Some are well-known personages like President Andrew Jackson who credited his victory in the Battle of New Orleans to the prayers of Ursuline Nuns, or Mother Jones, the diminutive Irish Catholic widow who was an advocate for worker’s rights. Some are infamous Catholic Americans, such as former New York Governor Mario Cuomo who invented the excuse that, ‘I am personally opposed to abortion, but, as a Catholic politician, I cannot impose my personal beliefs on others.’
 Many of the personalities brought to life in the stirring tales are little-known Americans who served their countrymen with honor.  I was astounded at times at just how much America owes to loyal, patriotic, little-known Catholics.  I kept saying to myself, “Where was this book when I was in high school?” Even the sisters who taught me in Catholic school never mentioned the stunning breadth of the Catholic influence in creating this nation and making it the magnet for immigrants that it continues to be. You certainly won’t find it in a textbook written by secular publishers, and there are few Catholics who are well versed in this information. It is a precious legacy which merits a wide audience because it will be a game-changer when enough Catholics know just how much American owes Catholics for becoming the great nation she is. We will fearlessly take the lead in politics again, ready to answer our many critics, that yes, Catholicism belongs in the public square, for that is where it does our nation the most good.
Who should read this book? Homeschoolers, Catholic school teachers, public school teachers, students who face that daunting question; who should I write my report about? Grandparents who want to improve their minds, and their grandchildren who are often on the front lines of the culture wars. Politicians and pastors looking for gripping and often humorous stories for their public speaking. Did I leave anyone out?

This book is meant to be read only one story a day, but you will find yourself reading more. Add this pithy, well-written book of riveting stories to your daily prayer time, and you will find yourself inspired to go out and become the protagonist of the next great story of a Catholic who changed American history. 

Monday, December 8, 2014

Letter from a Special Mother to the New Jersey Legislature on the Physician Assisted Suicide Bill

Thirteen years ago as the Twin Towers crumbled to the ground, I wept, but I did not despair. 
I had hope, for the future in those difficult times for I was carrying my third daughter.

 Christina was born in March of 2002 and we were thrilled. The fact that she was born with an extra 21st chromosome was not nearly as discouraging as losing thousands of Americans on 9/11. Life was a sign of hope, no matter how the person differs from our definition of 'normal.'

The second saddest day in my life was the day I discovered that not everyone welcomed my daughter into life. Two nurses in the hospital expressed regret that she was born and one offered me phone numbers to have her face "fixed" by a plastic surgeon. I was heartbroken by such cruelty from those whose lives are dedicated to alleviating suffering and saving lives. They made a value judgement that Christina's life was not worth living, and they assumed that I would agree. They never considered her a person with human rights. My daughter is full of life and optimism, she never met a person she didn't like, and everyone in the town we live in knows her name. She is the heart of our home and a gift to our community. 

My greatest fear is that one day, when I am no longer around to keep a close eye on the medical staff who treat my daughter, is that one of them will decide that preserving her life is too costly, that she has nothing to contribute to society, she is suffering too much, and would be better off dead. 

I have interviewed many mothers of children and adults with special needs and learned that this is far more often the case than the media will admit. Our children are often considered a burden to society and many healthcare professionals feel obligated to allow or help them to die.  That is why my friend and I founded KIDS(Keep Infants with Down Syndrome) to raise awareness of the beauty of life with extra chromosomes. 

We who love individuals with disabilities know how valuable they are to our families, you can read 34 such stories in my book(link in my signature). We know that allowing voluntary Physician Assisted Suicide will be one step closer to a society, like Belgium which has recently begun to euthanize children, the Netherlands where the elderly are afraid to go to a hospital,  or Denmark which bragged by 2030, there will be no more people with Down syndrome. 

America is the the nation who opens her arms to those in need from around the world, we must not become a place where you have to be perfect to survive. 

Leticia Velasquez
Co-founder of KIDS (Keep Infants with Down Syndrome)
author of "A Special Mother is Born".

Monday, December 1, 2014

The Other Ferguson

Reading of all the violent protests in Ferguson, MO, I was wondering why the word 'Ferguson' associated with racial violence was stirring memories in my heart. . . and suddenly I was brought back 21 years. To the Long Island Railroad Massacre

It was December 7,1993, my first as a mother. I was decorating our apartment to celebrate Las Posadas, a traditional Latino ceremony commemorating when Mary and St Joseph sought shelter in Bethlehem. The TV interrupted my joyful preparations with tragic news; 6 commuters on the Long Island Railroad stop near my home were dead, and 19 injured by a lone gunman, a Jamaican man named Colin Ferguson.
I will never forget how I felt when I learned that he had been expelled from Adelphi University which I had attended with him only three years before and that his intention was to start shooting on that campus, walking distance from the station where the shooting occurred. A relative of mine, who was Dean of Students at that time, had expelled him for threatening a professor. It was very likely that his name was on a list in Ferguson's pocket of intended victims. He lived on campus and could have been killed. 
This was not a case of a poor young man.  Ferguson was from a wealthy family, he had a car and driver pick him up from school. 
As soon as the news hit, Jesse Jackson announced his intentions to come to our community to quell any backlash against the black community. All of Ferguson's 25 victims had been white. It was said he had racial slurs written on a paper in his pocket, though he was never charged with a hate crime. When Rev. Jackson arrived, there was no violence, just a community in mourning, who invited him to conduct a memorial service in the cathedral. 

Besides a trial which sent Ferguson to prison for 315 years, the only lasting outcome from this tragedy was that a nurse named Carolyn McCarthy, who lost her husband and had her son injured by Ferguson, ran for Congress on a gun control platform and still represents that district. 

Why did our community act so differently in the case of Colin Ferguson than so many people in Ferguson Missouri? 

I think its because we had intact families who helped us soothe our broken hearts and solid faith communities to inspire us to forgive. We were not incited to anger by our clergy and community leaders: we were encouraged to forgive and heal. And so there are no secondary scars which arose from one man's hatred, no one else was hurt as is happening in Ferguson, MO. 
Colin Ferguson was put away to kill no more and we healed and went on with our lives, never forgetting those we lost bu honoring their memory with positive action. 
May the grace of God available to us in abundance this Advent help those who are angry about Ferguson MO to forgive, to heal and to rebuild their lives. 

Friday, November 21, 2014

The Church is giving thanks for the lives of those with special needs

Christina and Daddy waiting for Mom to attend Mass in Maine this summer.
Mass of Thanksgiving for the Lives of People with Special Needs on EWTN Sat Nov 22 at 8PM

The commercial brought me to tears. I have never heard of a Mass of Thanksgiving for the Lives of People with Special Needs. I have heard of people with special needs being highlighted in events with all three recent Holy Fathers, but never a Mass of Thanksgiving for their lives. The idea that Bishop Peter Baldacchino recognizes that they are "windows into Heaven" for which he wants to encourage the faithful of Miami to give thanks is unprecedented. I am very grateful for this and intend to thank him for it. May all bishops be encouraged to do the same. 

I will never criticize the Church for a lack of specific ministries for my daughter with Down syndrome. I just want my daughter to be included in our parish at Mass and social events. But, lately,  I get discouraged when its difficult to bring Christina to Mass on Sunday. She used to love going to Mass and receiving Communion but lately she will only go on Monday evenings when the church is nearly empty. She is isolated from our wonderful parish and so is her father who stays home with her and attends a later Mass in another parish. 
Thanks to the Lord for my thoughtful pastor, Fr Tito, who never misses a chance to shake her hand when she does make it to Mass. He understands that she is more comfortable coming to Mass on Mondays. and makes a point to welcome her. He even spoke about her contribution to the world in a short documentary Gabriela and I produced about her called "A Missionary of Love". 
Thank you Lord for these pastors who recognize that our "windows into Heaven" are gifts to us from God and give thanks. 

Thursday, November 13, 2014

Book Review: Yes, God! What Ordinary Families Can Learn about Parenting from Today’s Vocation Stories by Susie Lloyd

In a recent address, Pope Francis described the family as the, "primary place for education, the community of love and life in which every person learns to relate to others and to the world." He continued, "All vocations make their first steps in the family."
We Catholics know this, deep down, but we have a tendency to deny the latter part of that statement. Vocations are for other people’s kids, we tell ourselves, our families aren’t perfect enough. We over-idealize those families who have produced vocations to the priesthood and religious life. We place them on a pedestal; imagining a large family filling the pew each morning at Daily Mass, homeschooling in Latin, cheerfully doing farm chores all afternoon, then serenely kneeling in the living room each evening for the family Rosary. These ideal Domestic Churches have no loud arguments, no black sheep, and no doubts that their children would serve the Church. Since our own families are not like those, we reason that our children could not possibly have vocations to the religious life.
 Susie Lloyd, the best-selling Catholic humorist, and homeschooling mother of her own large family, assures us that these lofty images are accurate, some of the time. But there’s much more to depth to families who produce vocations than we think, and in exploring their various characteristics, we just might find our families have more in common with them than we think.
In “Yes, God!” LLoyd chronicles the childhood and vocation stories of nine men and women religious, describing the details of their family which she believes brought each of them to say “yes” to God’s call to religious life. Chapters are named for the predominant strength which those religious and priests learned from their families. There is “Yes to Strength”, “Yes to Duty”, “Yes to Generosity”. No matter what the inherent strengths of a family, a vocation always begins with a “yes” and a family which strived to serve God with their lives. Families bring their particular gifts to their vocation whether their home was rural or urban, athletic or artistic, rowdy, quiet, or just plain contentious!
These families are not perfect. At times, Mrs. Lloyd points out; even the challenges in the home were used by the Lord to help the future religious transform weakness into virtue. This is true in the family of Sister Marie Jose de la Rosa S.C.C. whose chapter is subtitled, “Yes to Spiritual Poverty”. Her father’s long term unemployment and depression posed a daunting challenge for her mother who worked to support and raise her children singlehandedly. For Mrs. Lloyd, it’s not about perfection, number of children, or proximity to a Church building, it’s about the attitude which engenders the person’s “yes” to God.
And the attitude is not always universal. Sometimes a vocation comes as a surprise. One of the funniest stories in the book involves Mrs. Lloyd’s inability to see the great potential in a college friend, Fr Jeremy Paulin, OMV, now a Vocation Director.
 So it seems no one is off the hook when it comes to raising Catholic children considering religious life, since no two vocation-producing families are alike. Mrs. Lloyd’s characteristic humor keeps the Catholic guilt light-hearted as she brings to light helpful habits which an aspiring mother to a religious can implement in her Domestic Church. It’s a lead by example book on Catholic parenting, and it will have you smiling at both the strengths and faux pas of your own family as you read the captivating stories.

Monday, October 20, 2014

Review of "Seven Saints for Seven Virtues"

Jean Heimann, the author of Seven Saints for Seven Virtues had a wonderful Catholic mother. She modeled charity in action; she baked goodies for neighbors, nursed her sick and cranky father in his final days and was a model of charity for her daughter. also grew up with the venerable old volume Lives of the Saints which in archaic diction and fascinating details, told fantastic stories of the heroic virtue of the saints. I wonder, if as a child, Jean thought, "saints are models of charity, so is my mother, therefore, she might be a saint". I know I didn't  think that way about holy people whom I came across in my childhood; for me, saints were far off, ethereal beings who never even considered sinning. I think many Catholics were under that misapprehension, thanks to over zealous authors of saints' biographies and lack of role models in today's darkening world.

That's why this book is so important to Catholic spirituality. By describing how central growth in virtue is to attaining holiness, and by practically defining the seven virtues as well as the seven deadly sins, Jean Heimann gently reminds Catholics that holiness is not for a few lofty individuals, its for everyone. Charles Péguy once said "the greatest tragedy in life is not to be a saint." No one ever grew in holiness by comparing himself to the world.  Seven Saints for Seven Virtues gives us vivid examples of who Catholics should emulate, paired with their best known virtue. It offers the reader a road map for growth in the virtues which leads to holiness.

Seven Saints for Seven Virtues offers brief biographies of the saints,  filled with vivid descriptions of the lives of contemporary saints St. John Paul, Bl. Mother Teresa,  perpetual favorites, St Joseph, St Catherine of Sienna,St Agnes,  and the dynamic duo of mother and son;  St Monica and St Augustine. Despite her Master's Degree in Theology, Mrs Heimann's explanations of why those saints exemplify a particular virtue are easy to understand for laypeople. Her faithful writing at "Catholic Fire", an award wining Catholic blog, has given her the ability to reach her audience, making the seven virtues seem attainable and attractive. By showing how virtue leads to union with Christ, and interior peace, she makes the reader long to practice virtue more in their own life.

But there's more. Just as her mother was a role model in her life, perhaps without her family's acknowledgement of her outstanding virtue, Mrs Heimann knows that many of us live among ordinary people whose lives exemplify a particular virtue. Six other people are held up as role models of virtue. One is Olympic skiier Rebecca Dussault, whose pure relationship with her childhood sweetheart Sharbel,  grew to a chaste and fruitful marriage. A 32 year old mother of four children, Dussault is a model of modesty to her teammates, refusing to wear immodest clothing, be unfaithful to her beloved Sharbel, or be exposed to pornography. She was mocked by her teammates, but it never affected her resolve to live chastely as a married woman, athlete, mother and home educator. Sometimes her career as a skiier took a back seat to her convictions, "I also needed t be clear with my U. S. Ski Team coaches, letting them know that my husband and I practice NFP and that if I were to conceive--not that my chances were any better than any other woman contracepting on my team--we would yield to life unquestionably.I had many opportunities to share to share our use of NFP with others in light of marital chastity, trusting it even when the commitment to the Team was of Olympic proportions."

 Mrs Heimann, a long time blogger friend of mine, saw the quality of diligence in my life (my family are still scratching their heads at this!) and included me in the chapter on the virtue of diligence with my great inspiration St. John Paul the Great. When I studied his encyclical "The Gospel of Life" I was given hope in the idea that even I, a home educating mother and part time writer, could become part of the New Springtime of Evangelization.  Seven Saints for Seven Virtues continues what St John Paul did in his pontificate, calling laypeople to evangelize where they are by leading heroic lives of virtue, attracting others to the light of Christ.

Monday, October 6, 2014

Why I stalked Fr. Benedict Groeschel for Three Years

When you are an enthusiastic Catholic and  live in the New York City area, running into Fr. Groeschel is no great accomplishment, the man had a punishing schedule for decades. I remember running into him at the pro-life prayer walk on the Feast of the Holy Innocents December 28 one year and asked him a question which made his face light up. I said,
"Father, can you tell me the story of the Jewish mother who got ashes on Ash Wednesday?" With a twinkle in his eye, he answered in his fluent Broolynese, "When her son asked her why she got ashes, she say, 'So listen, it can't hoit!'"
Fr Groeschel was a mixture of a teacher, psychologist, storyteller,  and of course first of all a Franciscan priest. The stories he told about little old black ladies at Adoration, the depth of his writing about suffering and his unswerving dedication to Christ made me seek out his endorsement of the book of stories from Catholic parents of children with special needs. So I began seeking opportunities to speak with him about my book. Stalking him.
The first time was at a high school on Long Island, where "The Human Experience" was screening. He kindly told me "I do blurbs." I am going to set up a website entitled "I do blurbs!"
I reminded Fr. Groechel who I was when my family were at a rest stop on I95 near New Haven, CT. He was tired but attentive as his companion Father Terry introduced us and I informed him of the book's progress.
When I was farther along in my writing I found him in Connecticut where he was the keynote speaker for a pro-life conference. No snappy responses and no twinkle in his eyes. He looked tired but still took the manuscript and put it in his bag. I felt awful.
But then a few months later, when he called my home to tell me how he loved the book and how he thought I should publish the 30 plus stories in two volumes, I felt wonderful. Father offered to write the foreword and said that with that, I would have no trouble finding a publisher. Sadly, his punishing schedule kept him from getting to my book. I can only imagine that he had a pile of such manuscripts waiting, so finally I called him at Trinity Retreat House.  Father Benedict sounded very weak on the phone, and a realized that it was not possible for him to do it. He was willing but clearly overwhelmed and there was a pleading quality in his voice.
I asked a good friend of his Mother Agnes Mary superior of the Sisters of Life whom I stalked at the Villa Maria Guadalupe on the Fourth of July Life Fest in 2009, certain that she was not as busy as Father Groeschel. I bet that would make her laugh!
Her foreword was perfect and made me realize that I was meant to be encouraged by Father Groeschel but that Mother was the perfect person to write the foreword.
I saw Fr. Benedict one final time. We had dinner together at a banquet for a pregnancy shelter and he was our keynote speaker. The PA system failed, and by the time we asked him to resume his talk, the wedding next door was blasting "La Bamba" and he could barely be heard. He bore it with patience, but I couldn't bear to bring up the topic of my book after all he'd endured at the banquet.
So we just enjoyed pleasant dinner conversation, and my book never entered into the discussion. Father is my favorite Catholic writer, speaker and priest. I was honored to have spent time with him and to have his verbal endorsement for A Special Mother is Born. He knew, as I do, that the spiritual beauty which emanates from these children would be a powerful means of conversion of hearts. May he enjoy the greeting from Jesus, "you fed me, clothed me, visited me when I was in prison, now enter into the home of my Father."
Father Benedict, the bad news is that I hope to follow you there someday. The good news is that I won't be bringing my book for you to sign!

Thursday, August 21, 2014

Richard Dawkins needs a hug from my daughter with Down syndrome!

Poor Richard Dawkins, he's a bright lad, but he just can't help stepping in it, can he?

Now he's gone and insulted those of us who love our sons and daughters with Down syndrome by suggesting we should have aborted our children. When a mother asks him what to do with her unborn baby with Down syndrome he answered.'Abort it and try again. It would be immoral to bring it into the world'
He's catching it now like a skinny kid in a schoolyard.

I was a bit like him growing up in public school. Bright. Bookish. Lonely.
In sixth grade, I suffered from social awkwardness (getting my head pushed into lockers by a naughty eleven year old boy with a crush on me) and the school psychologist tested me. Not him.
Apparently I had the problem.

Dr. Hess called my parents into a conference and announced joyfully, "I have wonderful news, your daughter is a genius." My parents were nonplussed. Mom had the perfect rejoinder, "That's great, but tell me something,  will that make her happy?" Good question Mom! It has made life both easier and harder. But it doesn't make me more valuable to society unless I use it for the good of others. Its how we use our gifts from God which makes us who we are.
Sadly in Dawkins' case, superior intelligence has made him the social misfit I once was. I outgrew it because God taught me something important; life is not about intelligence or superiority. Its not about being clever or right. Its about love.

The kind of love I experience on a daily basis from a little girl without the high IQ I have. My daughter Christina has Down syndrome and many intellectual challenges. You know what?  It has been those very challenges which have built tremendous character in her. She is persistent to a fault, slow to speak, meditative, and highly sensitive to the feelings of others; qualities which Richard Dawkins sorely needs.
Christina doesn't waste time or get others upset by pontificating on Twitter about who should live and die. She spreads joy wherever she goes and has made her mom into a better person. She inspired me to write a blog, publish a book, and go to Washington every year to defend her right to be born. She strips away my foolish pride, helps me unplug from the computer,  and induces me to spend time listening to crickets on a summer evening. She also makes a delicious homemade pizza!

Maybe I'll ring up Richard Dawkins and invite him over for a slice. 

Thursday, July 31, 2014

Why argue about the percentage of unborn babies with Down syndrome aborted?

Down syndrome advocate and mom Amy Truesdell Becker, recently wondered on her blog Thin Places on Christianity Today why the incorrect statistic that 90% of unborn babies prenatally diagnosed with Down syndrome are aborted us still used. There are new statistics which claim that 'only' 75% of those babies are aborted when diagnosed prenatally with Down syndrome. That means if you have an extra 21st chromosome you have only a 50% chance of making it out of your mother's womb alive.
The history about the 90% statistic is the following; it came from a Wall Street Journal article in which Dr Brian Skokto was quoted. It was read by then Senator Sam Brownback who then went on to introduce the Kennedy-Brownback Bill which required that expectant parents of babies with Down syndrome be offered up to date information on what life with Down syndrome was like. It passed both houses of Congress and was the last piece of legislation Senator Kennedy sponsored, a rare moment of bi-partisanship, which I commemorate here.
So, this bill and the resultant fame of the 90% statistic was the first effort to overcome widespread societal opinion that people with Down syndrome are better off dead. Sadly the legislation was passed as the Obama Administration took over, and HHS Secretary Kathleen Sibelius never funded it, with the required $5million needed to provide informational pamphlets to doctor's offices. So now the effort is going from state to state like the recently passed Chloe's Law in Pennsylvania.
The effort has resulted in a lot of infighting about what  should be included in informational pamphlets as chronicled in painstaking detail in Mark Leach's article. The main objection to the attractive, bilingual Spanish Lettercase booklet was voiced by individuals with Down syndrome who were insulted that abortion was listed under options for parents whose child had been diagnosed prentally with Down syndrome. This became even more of an issue in 2011 when a new blood test for Down syndrome MaterniT21 was released by Sequenom, raising the stakes as potential thousands of parents who would not be tested might now request the non-invasive highly accurate maternal blood test available at around ten weeks gestation.
So the ninety percent statistic is no longer relevant but it may be replaced with far more ominous one as more parents opt for this new testing. Amnio and CVS are invasive and fairly late term tests, occurring at 16 weeks with an few weeks till results are available.  Although MaterniT21 is only a screening test, and is not considered a diagnostic test, Dr Skokto has voiced concern that it will be used as a diagnostic test, and raise the current statistic of babies with Down syndrome who are never born.
All this could have been avoided if in 1959 when Dr Jerome Lejeune's team discovered that an extra 21st chromosome was the cause of Down syndrome, the information was used to improve the lives of those with the condition. He meant for his discovery to provide an avenue for research into prenatal treatments to diminish the effects of the extra chromosome on the developing baby.  Instead the karyotype of Down syndrome was combined with amnio to perform the first prenatal test and the method of search and destroy pre-natal testing was born. Eugenics took a leap into a brave new realm of science. Abortion was not widely legal in the US, however, abortion of babies with Down syndrome was more acceptable to the American public who saw the lives of those with Down syndrome at that time largely lived in neglect in state institutions as miserable. Mothers of a certain age were encouraged to abort merely based upon statistics that they might be carrying a baby with Down syndrome. So the prenatal test was touted as lifesaving, the very same claim made by Sequenom for MaterniT21. It will save babies lives.
In fact, Down syndrome was the abortion wedge issue of the 1960's. Those who would not approve of abortion of typical babies did approve of abortion for babies with Down syndrome. But Dr. Lejeune spent his life trying to undo the great harm caused by misuse of his discovery and died in 1994 regretting his failure to come up with a cure, which he insisted was necessary to save their lives. "In order to save them, we have to cure them. The task is immense, but so is hope."
Today, according to an article by Lejeune USA president Mark Bradford no fewer than five clinical trials for treatments to greatly improve the lives of those with Down syndrome are in progress, a testament to Lejeune's legacy and advocacy by parents like Rep Cathy McMorris Rodgers, (R-WA) mother of Cole a young man with Down syndrome and founder of the Congressional Down Syndrome Caucus. The Congresswoman has advocated tirelessly for more research funds for Down syndrome and with leadership growing in the Down syndrome community from groups like Keep Infants with Down Syndrome and Saving Downs the future does indeed look hopeful and terrible stats like 90%, 75% or 50% will be a distant memory. Because even one death due to one's unique chromosomal structure is one too many.

Thursday, July 17, 2014

Living with the Unthinkable; leaving your child to die in a hot car

As the mother of a twelve year old girl with Down syndrome, Christina's safety has always been my primary concern, and too often my obsession.
 . . . sometimes I have to put in a load of wash or get involved in yard work, look up and Christina is gone. The house is eerily silent, and she does not answer my panicked calls. It last happened on Sunday, in the dark, and she was found in the car in the driveway, waiting to go pick up Bella from youth group. Most times it is something normal which any other ten year old could do without freaking me out. But Christina is NOT a normal ten year old and stories like this terrify me.
 News that a child with Down syndrome like Christina has died in an auto accident as she wandered from her home in the middle of the night sets off my inner terror. So I put up extra high fences with locks around my property on a quiet country road, and changed all the door locks so that Christina could be locked in and allow us to sleep in peace knowing that this probably will not happen to us.

Recent news events have made me very grateful that my daughter's tendency to wander and her inability to be left alone for long periods has made me a super-vigilant parent. I don't have the luxury of being distracted very often. I must know where she is at all times, and rarely leave her with a babysitter who is not a family member. Its difficult to supervise someone that closely at age twelve, when she, an adolescent, pointedly slams the door in my face to get some privacy, yet it makes me feel that a certain type of agony is less likely to happen to me.

 I don't know if I could ever recover from the horror of finding that I left my child to die an agonizing death in a hot car.

When I read the multiple stories of such deaths in the news this summer, I wondered how parents could be so forgetful or careless that they forget their child, and then I remember that two of the holiest people who ever lived, St Joseph and Our Lady, left a twelve year old behind in Jerusalem.  Surely such holy parents were not guilty of sin, but Mary was most likely thinking that Jesus was with the company of men, and St Joseph was sure He was with His mother. Its a familiar scenario to even an obsessed mother like me.

 It happens to the best parents who misunderstand one another, who are overburdened with work schedules, or a large, disorganized family.  It happens to parents who share custody and are not accustomed to caring for their child, and it happens to parents whose motives are questionable. 

The real questions we need to be asking are:

1. How to prevent this tragedy from happening
2. How to help grieving parents.

There is a novel written after the author, Michelle Buckman read such a news article, and pondered for some time what sort of agony the mother who left the toddler in the car endured, and how she regained her sanity. Rachel's Contrition 
is a wrenching novel about Rachel's grief after leaving her child in  a car, and how it hurtled her spiraling downward into near insanity. She was delusional, almost catatonic and lost her home, her husband and custody of their son. She had nothing to live for as she slept her days away in her friend's guesthouse, visited only by her wraith-like, disturbed teenage daughter.

Rachel's Contrition shows how deep is the suffering that these parents endure, and how futile it is to expect them to recover in a short period of time regardless of how many children remain in their care.
The novel  reveals how help can come from the most unlikely of places, which gives the reader hope, how the grace of God, through His friend St Therese of Lisieux, reached into the pit of despair in which Rachel found herself and offered her a way out. 
When it was published, it rocketed to the top of Amazon's list of books for women, and rightly so, as its power and impact are unforgettable. If you like me are puzzled and disturbed by this rash of terrible events. and want to know how you might survive such a tragedy, this book is a riveting read and a consoling companion in this dark journey.

Wednesday, June 18, 2014

Our children radiate the Joy of the Gospel

I was recently reading about an upcoming conference at the Vatican entitled, "The Pastoral Project of Evangelii Gaudium” to implement the Holy Father's new apostolic exhortation, "The Joy of the Gospel". The keynote speaker is Jean Vanier, founder of L'Arche communities, a group of homes for the disabled where their gifts are cherished. For a minute I pondered the unconventional choice of speaker; the point of the conference is to help bishops bring the joy of the Gospel to their flocks and Fr Geno Sylva, the planner of the conference, chose a man known for seeing the spiritual gifts in the disabled. It was a connection that would escape many, yet the understanding of this connection between those with special needs and evangelization is becoming more and more common; the disabled, the little ones in the eyes of the world, are becoming recognized as living Gospels for those of us who are in need of evangelization.
I see it as the mother of a 12 year old daughter with Down syndrome, many times after Mass, parishioners will share with us that seeing my daughter at prayer or receiving the Eucharist inspired them. I hear it when I speak about my book "A Special Mother is Born" on live radio and the phone lines light  up with people anxious to tell their favorite memory of a loved one with a disability who helped expand their heart and grow their faith. The stories in the book have inspired parents who have received a prenatal diagnosis of Down syndrome to bring their child to birth despite their overwhelming fears. Our children have the purity of heart you must have to see God, but perhaps their greatest gift, is that they help us see Him as well.
Here is the story of a Canadian doctor who experienced a conversion from seeing nothing wrong with abortion to a rich life of faith.
But it slowly began to dawn on Dr. Lewis — by God’s grace, she says — that abortions were not a reasonable or safe option for either the mother or, of course, the baby. It was especially babies targeted for abortion because of a chromosomal abnormality that brought this to her attention.

“Gradually God began to reveal to me His heart for life. First He highlighted people with Down's syndrome in our community,” she said.

“I noted how joyful they were and how they impacted many around them in a meaningful way, often forcing us to stop in our busyness and celebrate the simple moments. I wondered when we, as a medical profession, felt that we had the right to decide who should live or die. I began to question prenatal screening for the purpose of eliminating a unique people group. How did we get to such a place — from protectors of life to destroyers of life?”
Perhaps the strongest anti-faith current in our society is what St. John Paul II called, "the culture of death", which is opposed to the Gospel of Life. Yet, somehow our single-hearted, loving children manage to pass through the bitterness and  name-calling and touch hearts. Even in the Huffington Post where the joy of little Pip, poster girl of the Happy Soul Project, is sprinkling joy like spring flowers. Her mother said in an interview where she did not stop smiling,
It's up to each and every one of us to change the world into just that. It's up to us to break down stigmas, motivate positive perspectives, see the ability in all, and respect and appreciate the value in everyone.
Joy, acceptance, love, and faith, coming from those who once embraced the right to abort such children. These children facilitate this miracle of grace in the hearts of those who experience the love they exude from every pore. 
Pope Francis knows it.Who can forget the image of the him embracing eight year old Dominic Gondreau on Easter Sunday 2013? It was covered by press outlets around the world as the we absorbed organically this "One Minute Lesson on Love". Dominic's father explains.
Why is the whole world so moved by images of this embrace? A woman in the Square, moved to tears by the embrace, perhaps answered it best when she to my wife afterward, “You know, your son is here to show people how to love.” To show people how to love. This remark hit my wife as a gentle heaven-sent confirmation of what she has long suspected: that Dominic’s special vocation in the world is to move people to love, to show people how to love. We human beings are made to love, and we depend upon examples to show us how to do this.”
So, Father Geno, thank you for calling up Jean Vanier,  the world's greatest advocate for those whom the world calls "disabled", to teach the shepherds of the Church, to look to these blessed individuals whose innocent faces behold God as examples to follow. If our faces could shine with that same pure love, our smiles could transmit that same electric joy, and our arms be as ready to embrace others, we would truly understand how to share the joy of the Gospel!

Tuesday, March 4, 2014

Guest Post; Preemie Prints Offers Families with Preemies Hope

We are an organization sharing hope and supporting tiny lives. Preemie Prints began 3 years ago with an idea. A spark, actually, from the Holy Spirit! After many prayers a decision was made to start an organization in Bryan College Station to offer support to families who had babies born prematurely or critically ill.
 With trust in the Lord and a passion to support families traveling this difficult road, we began our journey, hosting support group meetings and giving no-charge photo sessions for families in the NICU. About a year later we added sewing meetings and started donating needed items to our local NICUS. At first the only photographer was myself. Three years later we have over 75 photographers nationwide and have gifted close to 300 sessions to families. It's a beautiful thing!
 Our local support group meetings continue in Bryan College Station, and we continue to donate positioning devices for premature infants, colorful giraffes to bring joy to families, and much more on a monthly basis. I want to focus on our photography and prayer outreach with you today. We have an amazing community praying for preemies and babies born critically ill every day. We are always here to pray for those walking in these shoes. On our website you will find a prayer request form and anyone can email me directly anytime at amber@preemieprints.org to submit prayer requests. 
Why NICU Photography? For me personally photographs in the NICU gave me something tangible to hold and look at every day I was at home without my babies. Photographs helped me cope with the experience and helped me to heal afterwards. To this day I treasure those photos of my girls in the NICU, because it brings back an incredible part of my life. One filled with unexplainable faith in the Lord's plan, hope, and the ultimate love - the love you have for your children. 
I was blessed to bring my girls home. Their NICU pictures hang in their room to this day. They know how they fought to be here. Many families will face a different ending one in which they do not bring their child home and in this situation photographs are all the more sacred. I've had so many NICU families, each with their own individual journey, thank us for this gift. 
Through our volunteers, now over 75, we give a family at no cost, a professional photography session and a disk with a minimum of 25 photos that the family is free to print from (however many at whatever size). Our sessions are generally lifestyle sessions in the NICU. Photographing the babies, their surrounding, and the mom and dad naturally interacting with their little one. Some of our volunteers do offer more of portrait style session for graduates. In addition to our NICU photography we offer NICU graduate photography up to a baby's 1st Birthday.
 It is the family's choice weather they would like photographs in the NICU or once their baby is home. In more critical cases we always recommend inside the NICU. No family will know how their journey will end and in many cases in never truly does. We are here at any point between a baby's birth and their 1st birthday to provide a Preemie Prints Photo Session at no charge, it is our gift. It is our way of capturing proof of a miracle and letting families know they are not alone. It is our way to help a family always remember the strength they had together in overcoming a crisis. It is our way to celebrate God's gift of life. 

I continue to put this organization in the Lord's hands. He created it and He will lead us to families. We are only hands doing His work. I'm personally reaching out to other friends in the community to try and spread the word about our organization and ministry, so that we can reach more NICU families. A Family can visit www.preemieprints.org and click on "Program Service Areas". There they will find a map searchable by zip code and city. The request form can also be found on our site, along with inspiration and more online support. We also have a Facebook page with lots of information and inspiration that can be found here https://www.facebook.com/preemieprints
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Friday, January 17, 2014

The first week of homeschooling

I have homeschooled my older girls, Gabbi, 20, now studying for her BSN at Franciscan University and Bella, 16 who is at Marianapolis Prepartory School. They enjoyed homeschooling and parent led cooperatives until around high school, when they yearned for a brick and mortar type school. With Christina, its the opposite. I had Early Intervention, special ed pre-school and then, moved to Connecticut in time to start Kindergarten in our local public school. I had attended many conferences touting the advantages of inclusive education and wanted the best for my little girl.

All went well for the first three years as I document in "A Special Mother is Born" but then we discovered Christina has a congenital anomaly in her cervical spine and had to remove her from the playscape at recess. I realized that it was her primary source of socialization, and slowly, she began to lose interest in school. Then her pediatrician and I decided she needed more intensive personal instruction as she was losing her language skills and I had a PPT meeting and opted for non-inclusive self contained classroom placement. The Special Ed Director encouraged me to enroll her in an Applied Behavioral Analysis program they were starting in the Elementary school in September 2011 and I agreed.

It was a BIG mistake.

To say the next two years were an educational disaster is an understatement. I detail it here, so there is no need to belabor the point, but it led to my decision to once again become a home educating mother this December just before Christmas. I was anxious as Christina through all the struggles with the ABA or really the autism program, had become adverse to attending school and once at home, was very isolated, wanting only to see DVDs in her room. I feared she would remain up there, refusing to learn. But a report card from school convinced me that, as difficult as it looked, I could do no worse than they had. Christina received all zeros in every subject except Computers (95) and Art (100). I certainly could do better than that mockery of a report card. Educational tesing with three outside psychologists revealed a 50 point drop in IQ scores since Christina has been in school and described her as 'non verbal'. She has lost the ability to speak and read, so I knew it was time to go.

And, in the coup de gras,  I was informed by a member of the community, that Christina had been refused a library book by her aide, saying she would rip it. In eleven years of taking out books, both in our local library and at school, my daughter has only torn one book, and it was an accident. I see that as a clear sign that there was discrimination against her in school, and when I gave the staff a chance to explain what happened, they lied. So I knew I could no longer trust them to either be competent, fair or honest.

During Christmas vacation, her sisters and I made a daily schedule with her help, and she said, "School" which gave me hope that she would come to understand that school can happen at home.

Now in our daily routine, which is slowly moving from part time to full time, we do warm up swings as part of a sensory diet, do counting with manipulatives (see photo) , and are following a Downs Education International reading program designed specifically for students with Down syndrome, and, as a reward on Friday evenings,  we are attending Special Olympics swimming. So far Christina has been very cooperative and enthusiastic. I will document her progress here and welcome your input.

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Monday, January 13, 2014

Showers of Joy

She looked harried when I drove up to the clubhouse of her apartment complex yesterday. The heavily pregnant woman in a parka ran back and forth, trying to find the super to open the room where we were holding her baby shower, he was not to be found. I tried to comfort her as I dialed his number, hoping that the two dozen women I had invited would find a warm room to come out of the raw January wind. Soon he appeared, opened the door and the women, many of whom had never met this 38 year old single mother, flooded in, bearing gifts and food. Within ten minutes the room was decorated in baby blue and festooned with balloons and flowers, and an appetizing snack table set up. The Baby Shower I started in desperation to save a baby in danger was coming together at the last minute.

I met Carol five months ago, after she confided to a mutual friend that she was considering aborting her unborn baby boy because he had just be prenatally diagnosed with Down syndrome. She was recently divorced,battling her ex over child custody, and the baby's father had abandoned her and found a new girlfriend. She was being told by her doctor and every nurse she had contact with that abortion was her best option, that she was not capable of raising a little boy with an extra chromosome.  In fact, Carol had an abortion in a similar situation a few months ago and it did not improve her situation at all. She felt alone in the world and her self-confidence was at an all time low.

Our friend introduced us to have me share my thoughts on what life has been like for me as the mother of an eleven year old girl with Down syndrome. We met several times at my home, where her lovely six year old daughter and mine began to get acquainted, and she saw with her own eyes, the happy life of my Christina. Thanks to this, counseling at CareNet and Birthright, and many prayers from hundreds of my friends on Facebook, Carol chose life for her son, whom she named Elijah, and today we who loved her and her son, were celebrating with her.

We oohed and aahed over the tiny socks, the decorative onesies, the cuddly pjs, and the array of homemade knit caps and warm quilts. We talked about the joy of mothering a newborn and Carol began to smile. She was surrounded by love and support, with many women taking her contact information and promising to visit her and baby Elijah when he was expected in less than two months. She is no longer alone in her special mothering journey.

 I will take her to meet other mothers and children with Down syndrome, and attend conferences with her to help her best meet Elijah's complex needs. However, the child with Down syndrome does not need a PhD for a mother, the one thing he needs most is a mother who loves him and who feels loved herself. Thanks to an army of good-hearted women, Carol has been blessed with that gift which she can share with her new son.

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