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 Lily, Wherever 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 athttp://lilytrilogy.com/index.html

New Irish cartoon will feature main character with Down syndrome

A new children's cartoon in Ireland will feature "Punky" a six year old girl with Down syndrome. It promises to be a positive portrayal, treating her as just one of the family. This cartoon is perhaps a result of living in a nation where 90% of babies with Down syndrome are not aborted. Abortion is still illegal in Ireland, and a visiting US professor wrote an article about how casually children with Ds are accepted in Irish society.
The only US cartoon to feature a character with Down syndrome was Family Guy, which was a disaster, as it led to a disgusting song about the sexuality of girls with Down sydnrome. People with Ds are a novelty in this nation, and an object of ridicule, not simply members of the community as they are in Ireland.

Gerard O’Rourke from Monster animation says that the main character Punky is a playful six year old girl who lives with her family but she is slightly different to other children. O'Rourke told the Evening heard that judging from their research this is the first ever series where the main character has Down Syndrome.

"It was unique and scary to deal with the subject matter on a mainstream cartoon. Down Syndrome Ireland provided a great bedrock and they were completely behind the idea of us doing the show," he said.

He added: "We wanted it to be shown among mainstream cartoons. It's not like a special show being shown at a special time. It'll be shown in amongst Dora the Explorer and Peppa Pig."

Good for Mr O'Rourke! You can't accept a type of person you rarely see, so frequency of contact leads to acceptance. I have never faced rejection of Christina by children, merely curiousity.

Maybe American TV will carry the show and teach young people in the US what a child with Down syndrome is like, they would certainly have to search far and wide to find one here.

Read the entire story at Irish Central.

Book Review: "Roadmap to Holland"

By Jennifer Graf Groneberg
292 pages

Those of us who give birth to children with Down syndrome have been likened to travelers to Italy who find that their plane unexpectedly lands in Holland. The title “Roadmap to Holland” is a reference to that famous essay by Emily Perl Kingsley, who worked for decades writing for Sesame Street and whose son Jason has Down syndrome.
She has for generations provided this invaluable wisdom for new parents of children with Down syndrome. In “Roadmap to Holland” we meet Jennifer, a new and compassionate companion on our journey raising a child who is both very different, and yet surprisingly similar to our other children.

Jennifer and her husband Tom had the perfect life; both writers, they lived on a peninsula on a lake in Montana; they worked in their home office down the hill from their home, surrounded by peace and tranquility of nature. Their life was enlivened by the joy of a young son, Carter. Just what inspired them to test fate by conceiving again? This question kept returning to Jennifer’s mind as the difficulties in her journey to Holland began to reveal themselves. Twin boys, Bennett and Avery and were born seven weeks premature with the daunting possibility of lifelong repercussions. Just when Jennifer thought the news couldn’t get worse, she was informed that Avery, her little blue-eyed boy with a full head of blond hair, had Trisomy 21, an extra 21st chromosome. Jennifer’s first reaction, like so many, was an urge to flee, leaving all the fears behind. She, however being the valiant woman she is, stayed the course, and, for months commuted to the hospital, pumping her milk round the clock, holding her babies by turns, caring for her older son, longing for a full night’s sleep, until, finally, her little boys came home, one by one to the little house by the lake.

Jennifer’s story is a vivid, day by day journal of some of the most devoted mothering in modern literature, tempered by her honest descriptions of her personal growth in acceptance of Avery’s diagnosis. Her vivid descriptions of each scene, draws us into her life’s journey so deeply that we are reluctant to see the book end. “Roadmap” evoked so many of my own fond and painful memories as the mother of a daughter with Trisomy 21, that I feel as if I could easily spend a quiet winter afternoon at the little house by the lake chatting with her by the fireplace, sipping tea as our children play at our feet.

Still searching for the spiritual underpinnings of life, Jennifer is not afraid to admit that she has not found all of life’s answers, yet she is powerfully articulate describing the beauty of what she has found; that life with three little boys, one of whom has an extra chromosome, is a blessing she never would have anticipated. She has been enriched by her experience in ways which, until this book came out, many other mothers could not appreciate: she cites the tragic statistic that 90% of expectant mothers whose unborn child is diagnosed with Down syndrome choose to end it’s life. Books like “Roadmap to Holland” provide support to mothers facing the daunting prospect of raising a special needs child; they know that they are not alone. They can pick up this volume; and enter into Jennifer’s world of challenges, tears, and triumphs, where, through sleep-hooded eyes; a grateful mother can still see the sun shine.

I recommend this book for mothers who are facing challenges, and seek companionship on their journey. Jennifer has an extraordinarily detailed description of the therapies available for our children, coupled with a complete appendix with resources for parents of children with Down syndrome. I hope that “Roadmap to Holland” joins “Gifts” on the bookshelves of obstetricians and genetic counselors who want to give their patients a realistic yet inspiring idea of what it’s really like to raise a child with Trisomy 21 in today’s world.
Order the book here.
Read Jennifer's blog Pinwheels.