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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Wednesday, November 6, 2013

BioTalk, Episode 6: Good News About Down Syndrome

http://www.youtube.com/v/MW7HY5-PDxA?autohide=1&version=3&feature=share&showinfo=1&autohide=1&attribution_tag=76GiqhESXLs5SVbk5C6xnA&autoplay=1

Friday, November 1, 2013

Stand up for Shea Riddell


Shea Riddell is a stunning blond with a dimpled smile and a striking aura of innocence. She smiles shyly from the photos in the article about the bullying incident which had made her a bit of a celebrity. She seems overwhelmed by the attention she is receiving, but still grateful for the support. You can't help but like her. At least thousands of people who have come to her aid feel that way. But not everyone agrees that Shea, who suffered a lack of oxygen at birth which means at 18 she has the mental capacity of an 8 year old, is a lovely teenager.

Someone wants her dead.

Someone in her social circles doesn't like her at all, in fact she has called her vile names and threatened her with rape and violence. Such cruelty is unthinkable, but after a bullied teen committed suicide in Massachusetts and more recently in Florida, it is becoming frighteningly commonplace. How did bullying, which was always present in schools, get so out of hand?

After all, bullying has always existed in the schoolyard. I remember suffering as Shea does way back in 1974, when I was transitioning from elementary school to junior high. An upper class man followed me around the neighborhood, threatening me with a beating as I walked to school alone. Just because of who I was. I was, like Shea, a bit shy, but unlike Shea, I was a good student, a nerd. What we have in common is that we stand out in the crowd, we are different. Different in ways that an unhappy girl can't stand. No school authorities offered to intervene for me and I continued to walk to school alone. Eventually I saw that the threats were empty and the girl who terrified me wound up a lonely single parent in high school. In high school, I felt sorry for her. But that was before cell phones and the Internet made harassment anonymous and omniscient.

I think there is another factor at work in Shea's case. She is mentally disabled. 'Retard' is one of the epithets hurled at Shea, and again, I feel her pain. I have a daughter who has Down syndrome and is mentally challenged. When I learned of Christina's diagnosis and shared it with her nine year old sister, she broke into tears. "Mom, they'll make fun of her like they did to those kids with Down syndrome in school" she sobbed. I reminded her that anyone who is different is mocked by those who are unhappy in life, but she has a point. We have less tolerance for those who are disabled than we used to.It has to do with abortion.

For the last forty years the 'cure' for Down syndrome has been pre-natal testing and abortion. It is now expected that moms who learned their child had Down syndrome will abort, so that no one did research to help those with Down syndrome, and often they were denied life saving treatments. Down syndrome researcher Dr William Mobley shared at a fundraiser for the Lejeune USA Foundation that as a resident working in the Emergency Room he diagnosed a teenager with Down syndrome with life threatening appendicitis. Twelve hours later, when the girl was not operated on and in severe pain, he asked his supervisor why, and the response was "She has Down syndrome". The implication was that her life was not worth saving.  Dr Mobley was motivated by this incident to be a pioneer in Down syndrome research so that this prejudice would be overcome, but sadly, not all health care workers have his compassion. Many of my friends were harassed by health care personnel who insisted that they abort their child with Down syndrome before he "ruins your life, and that of your children". Elimination of 'life unworthy of life' has, like recycling and having only two children, become an unspoken civic duty. For the good of the nation as it says in 1984. 

 So Shea was told by her tormentor. ‘"Why are u still here. Clearly no one wants you. U only have special needs friends." Somehow this person caught the toxic attitude that those with special needs are worthless. 
That pernicious attitude demeans all of us. We all need to stand up for Shea and for Christina. Someday our minds will fade and our usefulness will seem to diminish. Someone will think we are using more than our share of resources, and like the European nations who are expanding doctors' authority to cull the herd via euthanasia of the disabled and children. 


Monday, October 21, 2013

Ha Nacido Una Madre Especial

The very week my book A Special Mother is Born was published two years ago this month, I received an email from a Peruvian priest on the way to Rome. His sister in Peru was expecting a child with Down syndrome and the good Padre asked me if A Special Mother is Born was available in Spanish. I was delighted to be able to answer "yes, someday". My friend Marta who publishes "Fe, Fuerza Y Vida" the Spanish language diocesan paper of Rockville Centre (Long Island, NY) was working on a translation. Sadly, Marta became ill and the translation was not finished.
It must have been God's will that the book become available in Spanish. Last year,  I made a friend in London, journalist and Catholic mom to a daughter with Down syndrome, the gracious Francis Phillips. We are both devoted to Servant of God, Dr Jerome Lejeune, who she wrote about her article Dr Lejeune, Patron Saint of Down's Syndrome? Note that she was able to write to Dr Lejeune for advice when her daughter was born in 1990. Francis was kind enough to review my book for the UK Catholic Herald and  Spero News. She also mentioned my book to her friend, Esther Greciano, acquisitions editor for Edicciones Rialp who contacted me this spring about publishing A Special Mother is Born in Spanish.
I have been keeping this a secret for nearly half a year, and today Esther gave me the go ahead to announce that Ha Nacido Una Madre Especial  will be available in November.
You may purchase it from the Rialp catalouge or from any one of my blogs via the PayPal button, where you may have it autographed.
I am grateful to God who blessed the work of not only my hands but the other parents whose stories are in the new book, and for my new friends Francis and Esther who understand our love for these beautiful gifts of God. And thank you once again, Dr Lejeune, your heavenly intercession which is being felt as your legacy of love and care for those with Down syndrome lives on
.



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Sunday, October 20, 2013

World Mission Sunday Fundraiser: Gabriela's Mission Trip to Eduardor

On World Mission Sunday I am offering the profit I make on my book, A Special Mother is Born as a donation to my daughter Gabriela's mission trip to Ecuador next March. She is going with Franciscan University of Steubenville and is raising funds for it now. Order my book by clicking the PayPal button on the upper right of the blog, order a book,  and I will donate my $6.00 profit to Gabbi's trip and ship you a copy of my book.
That way, everyone wins, you get a collection of inspiring stories from holy Catholic parents, and Gabbi gets closer to her goal of helping the poor in Ecuador.

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Friday, October 18, 2013

True Beauty lies Within


Lord Byron has written a timeless poem about a beautiful woman. If you read it carefully, most of this woman's beauty is spiritual,
 "The smiles that win the tints that glow,
 But tell of days in goodness spent,--
A mind at peace with all below, 
A heart whose love is innocent."
That's why my innocent, loving daughter is the perfect illustration for this poem.(Did I mention that she also has raven tresses!)








"She walks in beauty, like the night"


She walks in beauty, like the night
Of cloudless climes and starry skies,
And all that's best of dark and bright
Meets in her aspect and her eyes;
Thus mellow'd to that tender light 5
Which Heaven to gaudy day denies.

One shade the more, one ray the less,
Had half impair'd the nameless grace
Which waves in every raven tress
Or softly lightens o'er her face, 10
Where thoughts serenely sweet express
How pure, how dear their dwelling-place.

And on that cheek and o'er that brow
So soft, so calm, yet eloquent
The smiles that win, the tints that glow, 15
But tell of days in goodness spent,—
A mind at peace with all below,
A heart whose love is innocent.


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Monday, October 7, 2013

Where do you pray your Rosary?

In honor of the Feast of Our Lady of the Rosary, I asked my holy,prayerful Facebook friends this question.
I pray it at bedtime.
Where do you pray your Rosary?
Here are there responses:
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