Friday, April 29, 2011

Book Review: The Lily Trilogy

 Novels can be dangerous; if they are compelling, they threaten to suck up all of a busy mother's time away from her children. For half a week, I have been capitalizing on the distraction of my family or stealing needed sleep from myself, in order to plunge headlong into the world of Lily in Sherry Boas' books The Lily Trilogy. Some novels tempt you to want to live in a fantasy world, to keep the characters you have come to know and love alive.

 I wondered, then, why I was becoming so engrossed with a book about an acerbic old lady alone in a nursing home within the iron grip of the final stages of  Parkinson's? It was the way author Sherry Boas described her adopted daughter Lily. Lily is a young woman with Down syndrome whom Bev had reluctantly agreed to raise when her sister Jen died of cancer at 39. I had never read a novel with a character with Down syndrome before, and Mrs. Boas write about Lily so vividly and with such appreciation of her childlike joy and limitless love, that I was immediately drawn in. 

But the compelling novels of the Lily Trilogy: Until LilyWherever Lily Goes, and Life Entwined with Lily had something more attracting me than merely an affinity for those with Down syndrome, something deeper. I immersed myself into the world of a lonely old lady whose life was coming to an end, and then  the lives of her adopted niece Terry and grandniece Beth in the subsequent books. I lost myself  not because of exotic locations (Washington State) or romantic heroes. I was enthralled by such exquisitely detailed characters made me care deeply about what happened to them, whether Bev would die lonely and bitter, whether Terry would give up on her marriage to her handsome Jake who never picked up a tool around the house, whether Beth could open her broken heart and learn from Lily, that nothing matters in life more than love. I had to know what happened to them, and read these three books at a breathless pace, finding my heart wrapped around the characters. Especially the lovable, stubborn Lily who never gives up on someone she loves.

The characters in the Lily Trilogy are as real as your own family, and as flawed. Yet, there is a theme in these novels, a theme of redemption which starts faintly at first, as a thirty-something Lily walks her frail aunt down the nursing home corridors to patiently feed her meatloaf and mashed potatoes even though she has long ago lost her sense of taste, Lily gives the love Bev meted out to her in tiny pinches, in unmeasured generosity Bev knows she doesn't deserve. But Lily's prodigious love changes Bev, and heals her. Not by taking away from the suffering of losing control of her limbs to the Parkinson's, but helping her to see beyond this life, to an eternal love mirrored in the gentle touch of the soft hands of a young woman whom the world rejects.

The power of selfishness to destroy lives versus the power of self-giving love to restore hope is the theme of this amazing story set in the future. Strange as it was to see dates like 2066 written as dates in the past of the novel's characters, this is no science fiction book. It is a story about real people who resemble people around us, whose flaws hurt and whose love heals us, and the hope that  turns despair into love though the power of pure intentions. 

The Lily Trilogy are the most Catholic of books in that that glory of the fullness of truth well lived and the devastating consequences of the Culture of Death are juxtaposed in stunning relief. The story tells it all, with profound relationships and moving symbolism, and enough realistic detail to remind the reader of a similar drama in their own lives. 
I hugged my nine year old daughter with Down syndrome each time I reluctantly put the books down, and saw heretofore unappreciated qualities in my family. The Lily Trilogy filled my heart with gratitude for my family, and made me determined to be the catalyst of God's healing in my family. 
Give it to your mother for Mother's Day and let a little of Lily’s light intertwine in your own life. 

These are the novels I want my daughters losing themselves in this summer. I want to sit outside with cups of tea in the summer twilight and talk about Lily, Beth, Pablo and Terry. Then, I want to pick up the books and visit them again. These books, after drawing me into their world, make me reflect on my own with appreciation and want to become the transformed Terry who sees the nobility in her husband she missed in 20  years as he moved across the country to care for her sister Lily. To make my home radiate with the joy of their renewed love. To take my precious nine year old daughter Christina in my arms and thank her for the joy she has brought to us, and not to fear what her adulthood will bring. Whether or not she lives independently, she, like Lily will be a blessing to whoever shares her life.

How many times can it be said that a novel makes you a  more grateful, loving person who reenters life from the world of the novel to embrace the challenges which sent you running into the pages of the book in the first place?
Recommended for ages 14 and up, no objective content.
Books may be purchased online at

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Wednesday, April 27, 2011

Link between cancerous cells and Trisomy 21 discovered

Researchers in Boston have uncovered a link between Down syndrome and cancer. People with Down syndrome are LESS likely to have cancerous tumors, and here's why;

The report also for the first time reveals that a molecular switch, an enzyme called DYRK1A, performs a crucial step in assembling the p130-DREAM complex, and thus is novel control point for quiescence and senescence. When DYRK1A is turned on, it acts through p130 to set in motion the assembly of DREAM, which turns off the growth genes and allows cells to depart the growth cycle and become quiescent or senescent.
DYRK1A's ability to turn off cell growth genes may also be involved in the lower-than-normal development of brain neurons in Down syndrome, say the scientists, who are investigating possible new avenues to treating the disorder.
While they tend to have cognitive losses, people with Down syndrome have a markedly lower risk of most types of cancer. DYRK1A is made by a gene on chromosome 21, which is present in three copies instead of the normal two in people with Down syndrome, causing the enzyme to be overproduced. DeCaprio said this abnormal activity could explain both outcomes: DYRKIA-triggered DREAM formation could help suppress cancers by driving them into senescence, and also reduce the generation of brain cells during development.

This discovery can help both the underdevelopment of neurons in the brain of those with Down syndrome, and the unchecked growth of cancerous cells.That's why while those with T21 have fewer brain cells, they also have fewer cancer cells. LIGHT BULB!!!
 It seems that a rising tide lifts all boats, if researchers had shown more interest in Down syndrome earlier we may have made greater strides in curing cancer. Instead, we considered pre-natal search-and-destroy to have 'solved' the 'problem' of Down syndrome, suppressing interest in such research for decades, except of course for that of Dr Jerome Lejeune.
Thanks be to God we are not accepting this any longer and are agressively pursuing knowledge over eugenics. Let us pray that a significant treatment for cognitive delays in Down syndrome will precede widespread use of new blood tests for Down syndrome, or it will be too late to save those we love from extinction.

Read the entire article here.
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Tuesday, April 26, 2011

Easter at our house

  At St Mary's we attended 10AM Mass. Christina wore an Easter Bonnet and enjoyed a dainty pink patent leather purse and tiny blue bunny to compliment her spring-like ensemble. She was an angel in church and received Our Lord in Holy Communion.
Mass was followed by the first annual Easter Egg Hunt sponsored by the Knights of Columbus.
Christina.colored a picture about the Resurrection and won a chocolate Cross. Grandpa had another lovely piece of chocolate waiting for her at home, a handmade chocolate bunny from Northport Sweet Shop. He's be buying those for us since our childhood.
The day was warm and sunny in contrast to the week of rain which preceded it, a perfect Easter Sunday full of innocent joy.

He is risen, He is risen indeed,

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Monday, April 25, 2011

Christina's show on Crossroads TV program

 The show which features my daughters and I is now available online at:  Just click on the date of the show: April 23, 2011, and it should pop up.
 We are on at 8:30 after the piece about the Pope John Paul II exhibit at the Knights of Columbus Museum. 

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Thank you to those who help research Down syndrome

Thanks to the leadership of NJ Governor Christie's wife, Mary Pat Christie, by promoting "Light the Way" an initiative of Research Down Syndrome to call awareness to Down syndrome research projects in the USA, several "first spouses" of our nation's governor's lit their residences in blue on March 21, World Down syndrome Day. Because of efforts like this we have more funding for research to help people with Down syndrome develop their potential.
Here's a bit about Research Down syndrome:

Research Down Syndrome is a non-profit foundation that supports and funds Down syndrome cognitive research conducted at leading institutions that are studying the basis of the intellectual impairments associated with Down syndrome, including Johns Hopkins University, Stanford University, The University of Arizona, University of California, San Diego, and University of Colorado. Recent scientific advances have revolutionized this field of research, providing for the near term development of targeted medical therapies to treat the cognitive challenges associated with Down syndrome, improving memory, learning and communication, expanding and enhancing life opportunities, for people of all ages with Down syndrome. Research Down Syndrome is a legal corporate entity, and is a 501(c) (3) nonprofit organization designated by the Internal Revenue Code. For more information, please visit, or contact RDS at, or 877.863.2121.
Watch their amazing video on Down syndrome research here. 

This Saturday, I had the delight ordering decaffeinated Green Tea capsules for Christina from the health food store, knowing that research results in Spain had already proven their effectiveness.Thank you to the Jerome Lejeune Foundation for the first ever effective therapy for improving the cognition and learning. of people with  Down syndrome.
In France, Jean Delabar, a researcher at the CNRS in Paris, used another method consisting of acting directly on the Dyrk1A gene on chromosome 21. Because it exists in 3 copies, this gene functions excessively, so the aim was to diminish its activity, which Jean Delabar succeeded in doing by injecting a natural inhibitor in the mice, namely a molecule derived from green tea. In Barcelona, Pr. Mara Dierssen successfully carried out a pre-clinical trial with this molecule on ten adult patients aged 20 to 30. She is now preparing a clinical trial on 100 patients.

Read about the research with Green Tea in Barcelona at this link.
May this be only the beginning of a growing trend!

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Saturday, April 23, 2011

Crossroads Show to be aired Holy Saturday

The Archdiocese of Hartford's TV show "Crossroads" will feature my daughters tomorrow on Channel 20 at 10:30 AM CCTV. You can get it across the state of  CT. 
 It focuses on the documentary Gabbi did on her sister with Down syndrome for a film competition and their close relationship. I got in a few words as well!
If you miss it, I can post a link here. 

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Thursday, April 14, 2011

Our new chicks

 Today we bought a dozen one-day-old Rhode Island Red and Aracauna chicks along with a heat lamp to keep them warm, and chick feed. We were asking so many questions,  about how to care for them,  that we gathered a crowd of farmers who congratulated us on our new adventure. They gave us advice and seemed pleased that we were embarking on a new venture. They asked us if we had a chicken coop to keep them in.

 I felt proud as I said "yes", since I've been keeping three hens since the summer. Thanks to the help of my husband and in-laws from El Salvador who had a family farm, we have been running a family farm for a year now.
Now we are really chicken farmers!
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Wednesday, April 13, 2011

Join me for WEGO Health’s Webinar: Navigating Your Health Narrative!

I just registered for WEGO Health’s exciting new webinar and I wanted to share with everyone.
  Here are the particulars:

What: Navigating Your Health Narrative Webinar

Who: Health Activist Panel with Lisa E, Erin B, Jenni P, and Amanda D

When: Thursday April 21st 8pm EST (the webinar will last one hour)

Where: Sign up here (link) and you’ll get all the details

The webinar is for anyone from seasoned bloggers to blog-readers who want to start their own blog. The webinar will cover the basics of blogging and include more advanced tips and tricks for promoting posts, managing your time, and establishing your blog “voice” and how to raise awareness about your condition through blogging. 

By signing up you’ll also have a chance to ask specific questions for the Health Activist panel that will be answered during the live Q&A portion of the webinar. You’ll get access to the archived version of the webinar!

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Tuesday, April 12, 2011

Green Tea proven to help memory and motor skills in those with Down syndrome

This is amazing news!
 The first positive therapeutic trial of a substance we all know, Green Tea, which improves both memory and psychomotor skills, with absolutely NO side effects!!
I am boiling the kettle as I write, I am preparing iced green tea for Christina when she comes home from school! Of course, there is no information on dosage in this article, but I want to get her started in learning to love the somewhat unusual taste. 
God bless the wonderful Jerome Lejeune Foundation for sponsoring this breakthrough trial! If it is to be done in the USA, you will find out here. If you want to find out on your own, sign up for the Jerome Lejeune Foundation's email press review, known as Genethique by clicking here.

First promising therapeutic trial for treatment of Down’s syndrome

First promising therapeutic trial for treatment of Down’s syndromeLe Figaro reports that advances have been made in research on trisomy 21, presented at the second International Conference Jérôme Lejeune (JIJL), held 24-26th March 2011: a first human therapeutic trial demonstrated, in particular, positive effects on memory and psychomotor skills in persons suffering from Down’s syndrome. Press reviews of 21-25/03/11 and of 28-03_01-04/04/11).

In 2009 Jean-Maurice Delabar’s University of Paris Diderot team demonstrated that inhibiting an additional enzyme on chromosome 21 (the enzyme Dyrk1A) improved cognitive symptoms in affected mice. The researchers discovered a natural inhibitor of this enzyme: epigallocatechin gallate, or EGCG, a powerful antioxidant found in green tea. It is a natural substance producing no secondary effects, which can also be administered orally. Prof. Mara Dierssen’s team therefore launched a first clinical trial in Spain in 2010, financed by the Fondation Jérôme Lejeune, at Barcelona's Center for Genomic Regulation. The pilot trial was conducted on 30 patients aged 18 to 26. "Three months after start of treatment, most families had guessed if their trisomic child was receiving EGCG or a placebo, and a month of treatment seemed enough to observe positive effects on memory and psychomotor skills. This effect disappeared with the end of treatment", explains Mara Dierssen. "The encouraging results with EGCG, without any undesirable effects whatsoever, incite us to test other parameters such as dosage and treatment duration", she adds. In the long term, the beneficial effects of the treatment over the course of the illness could be even greater if begun earlier. Meanwhile, Spanish researchers are preparing to launch a vast international study in dozens of hospitals centres.

Thanks to advances in research, specialists say that soon the condition of those suffering from the illness could be somewhat improved. "This was unthinkable 10 years ago", exults Dr. Henri Bléhaut, scientific board member and organizer of the International Conference Jérôme Lejeune; the conference is devoted to research on genetic intellectual disabilities and is also the world's leading professional gathering on Down's syndrome research.

Other approaches were also presented at this second JIJL, demonstrating encouraging results in animals and targeting more specifically memory and learning deficits in persons with Down’s syndrome. Substances such as memantine or fluoxetine, already available over the counter for animal use, could be tested soon on humans. Although not entirely free of secondary effects, they too offer hope in reducing intellectual deficiency in trisomic persons.

Le Figaro (Pierre Kaldy) 05/04/11ac

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Monday, April 11, 2011

Cardinalpitcher Albert Pujols has a foundation to help T21 families

Cardinals first baseman Albert Pujols has a daughter Isabella with Down syndrome. He was featured on 60 minutes last night, where he described his Pujols Family Foundation. which helps the poor in the Dominican Republic, and helps families with a child with Trisomy 21. He plays hard, lives a clean lifestyle, is universally well liked, and is on the road to the Baseball Hall of Fame.
He is a shining example of a sports hero who truly deserving of our children's respect.
Now, doesn't that brighten your Monday morning?

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Saturday, April 9, 2011

The Arc does a good job of describing Down syndrome on its site

I often cringe at the dated descriptions of Trisomy 21 on the web, but this page on Down syndrome at the ARC website was so positive, I had to share it.
"Life expectancy for people with Down syndrome has increased dramatically in recent decades - from 25 in 1983 to 60 today.  Researchers are making great strides in identifying the genes on Chromosome 21 that cause the characteristics of Down syndrome.  Many feel strongly that it will be possible to improve, correct or prevent many of the problems associated with Down syndrome in the future."
You can always tell when someone who is writing about Down syndrome has actually had contact with someone  with Down syndrome. They see their strengths and have a sense of hope for their future.
Good for you, ARC!

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Friday, April 8, 2011

Litany of Humility

This is my pastor's favorite litany

O Jesus meek and humble of heart, hear me

From the desire of being esteemed.........Deliver Me Jesus

From the desire of being loved.............Deliver me Jesus

From the desire of being extolled ..........Deliver me Jesus

From the desire of being honored..............Deliver me Jesus

From the desire of being praised......... Deliver me Jesus.

From the desire of being preferred.........Deliver me Jesus

From the desire of being consulted...........Deliver me Jesus

From the desire of being approved.............Deliver me Jesus

From the fear of being humiliated.........Deliver me Jesus

From the fear of being despised............Deliver me Jesus

From the fear of suffering rebukes..............Deliver me Jesus

From the fear of being calumniated...........Deliver me Jesus

From the fear of being forgotten................ Deliver me Jesus

From the fear of being ridiculed..............Deliver me Jesus

From the fear of being wronged............Deliver me Jesus

From the fear of being suspected...........Deliver me Jesus

That others may be loved more than I..........Jesus, grant me the grace to desire it

That others may be esteemed more than I ................Jesus, grant me the grace to desire it

That in the opinion of the world others may increase and I may decrease..............Jesus, grant me the grace to desire it

That others may be chosen and I set aside............Jesus, grant me the grace to desire it

That others may be praised and I unnoticed............Jesus, grant me the grace to desire it

That others may become holier than I, provided that I may became as holy as I should.......................Jesus, grant me the grace to desire it. Amen and Amen

Imprimatur James A McNulty Bishop of Paterson NJ

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Thursday, April 7, 2011

7 day blitz for Kirill.

our perfectly imperfect life: a 7 day blitz for kirill.: "On March 17, 2011, the Davis family sat in a Russian courtroom and listened as the judge rejected their plea to adopt Kirill, an orphan with..."
The judge refused to allow the American family adopt an orphan named Kirll because he is "socially unacceptable". He has Down syndrome. The family is appealing the case, but the costs which are usually  30K have just jumped thanks to the judge's prejudice. He wants Kirill in a mental hospital, which is where Russian orphans with Down syndrome are warehoused. Its a nightmare.
Meanwhile, there is a great blitz going on at Our Perfectly Imperfect Life to raise money to bring Kirill home.
Click the link above and join in. There are a dozen awesome prizes. Even Patricia Heaton heard about this and is donating up to $10,000 to Reece's Rainbow, the agency which manages overseas adoption of orphans with Down syndrome. She'll donate one dollar for each new follower Reece's Rainbow gets on Twitter.Follow Reece's Rainbow on Twitter by clicking here.
Read more on Fox News.

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Friday, April 1, 2011

Why Terri Schiavo's death was personal to me

And why the Holy Father's death was an affirmation of the value of human life
 is the subject of my article at Patheos.

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