Saturday, July 27, 2013

Baby Christena has Hillary's "Village" behind her, meeting her Down Syndrome handicap head on

Child born with Down Syndrome sparks

 love, unity, courage in Cosgriffe family

Christena's auntie Misha bestowed a pretty new dress!

STORY By CHRISTENE MEYERS
PHOTOS By BRUCE KELLER, MISHA 
MINESINGER, PATRICK COSGRIFFE

SOMETIMES we're tested in ways we don't understand. Our family has met many challenges. We rise to the occasion, doing the best we can.
So it is with the Cosgriffes as we deal with a first:  raising a handicapped child.
Christena Lynn Cosgriffe was born June 30, 2010, with Down Syndrome.
MONTHS BEFORE her birth, my brother Patrick left a voice message at my Arizona home, telling me "I'm going to be a papa," I was floored -- speechless -- a rarity for me.
Christena likes music, and is happy to sing and clap with her musical family.
Patrick was approaching 50.  He was single. He was planning to quit his job at Sears and return to college. He was overweight, with heart problems.
For all these reasons, I asked my beloved brother:
"A BABY? Seriously? It isn't  April Fool's Day. Are you sure?"
The baby's mother refused to take the test which would have determined a possible birth defect. She was in her mid-40s and the chance of a baby having Down Syndrome increases with its mother's age. We all crossed our fingers, meditated, prayed.
The day the child was born, the doctor confirmed that Christena indeed was a "special needs" baby. She has Down Syndrome, an extra copy of chromosome 21. We had done the homework. We had work to do.

Christena's birthday party attracted family and friends,
caregivers, and her physical and speech therapists.
 
HER FIRST months were complicated and after an emotional, expensive and difficult legal battle, my brother Patrick H. Cosgriffe, obtained custody. Christena came "home" to our care.
She's named after three strong women -- myself, her great-great grandmother Christena Wilson Pittendrigh, and another auntie, the late Robbie Lynn Cosgriffe Townsley, her first and finest advocate. The child adds joy to our lives, just as cliches about special needs children predict.
But as Hillary Clinton famously said, "It takes a village."
CHRISTENA'S "village" is our Cosgriffe family -- strong, loving, loyal and, thank goodness, large. Her support includes a network of savvy and supportive speech and physical therapists, a fine pediatrician, excellent cardiologist, devoted daycare personnel and many others who love her.
Christena turns three at a party with friends and family.
WEE CHRISTENA had her first lung surgery in Denver when she was just weeks old.  She is beset with physical woes, relating to the birth defect: a tendency to ear infections, trouble chewing and sometimes swallowing because of compromised jaw muscles, a hole in her tiny heart which will likely require open-heart surgery down the road.  Her kidneys, eyes, thyroid and other organs are monitored.
SHE COULD develop skeletal problems, so her posture is carefully observed.  She has worn leg braces and supports in her shoes, to boost her ankle function and walking.
At her third birthday, she was walking with spirit and confidence. Patrick walks with her every day.
Christena and her father, Patrick Harry Cosgriffe, enjoy their back yard.
She is cheerful and loving, laughs and mimics others, and is an observant quick study.
SHE QUICKLY learned my Yorkies' names, and says, "Oh, puppies. Hi, Nick and Nora."  She knows her colors and brings me the pups' kibble bowls -- blue for Nick, red for Nora.
"OK, puppies. Eat now," she says, clapping her hands.
WHEN SHE was just days old, I touched my pointer finger to hers and whispered, "Sistine Chapel." That quickly became our greeting, one which others in "the village" have adopted.
Michelangelo's magnificent painting of God and Adam touching hands has always inspired me, heretic that I claim to be.
Christena and the writer, Christene, indulge in silliness, at play with zucchini. 
When Christena sees me, she extends her "ET" finger to meet mine. I hope this is always our special greeting.  She calls me "Ween" -- her version of "Queen," my nickname from her, based on her tiny "Princess" t-shirt. "There are many princesses in a court," I told her when she was just one. "There is but one Queen! It is I!"
"Q" IS A  tough letter to pronounce, but I know she'll master it.
Christena and I have a special connection, which includes laughing and abundant silliness.
My brother loves this late-in-life only child dearly.  He keeps her immaculate and beautifully groomed.  Her dark hair glistens, often in a pony tail.  Her face is always shiny clean.  She smells like a spring valley after rain. When she slops pea soup or smears frosting on her dress, she is quickly changed.
Christena recently met cousins in the "Cosgriffe Village"
at her great uncle Harry Cosgriffe's memorial. Auntie
Olivia holds her at the Harlowton Cemetery.
PATRICK HAS returned to college, with plans to be a drug and alcohol counselor. He is losing weight, walking, getting fit.
He busy day is long and complicated: study and classes, childcare and seeing to Christena's complex medical needs, exercising, support groups, laundry, meal preparation.
Meanwhile, "The Village" fills in the cracks. Sister Olivia walks and dances with Christena. Brother Rick and his partner Jane watch her and read to her.  Sister Misha dotes on her, too, sending her adorable dresses from Atlanta.  I pick out books for her, sing to her and hope she'll be a piano player. She has nice, long fingers! Patrick's good friend, Ginger, loves her dearly and contributes to her care.
Christena had a new birthday gown as she turned three.
COUSINS, FRIENDS and caretakers lavish love and attention upon her.  Her speech therapist Vicki Andre and her physical therapist Linda Malloy came to her birthday party.  They sing her praises, and believe she will be able to attend regular school, so well is she doing in day care and pre-school. The early attention paid is making all the difference in her handicap, needs and personal potential.
MY LATE mother Ellen would have loved this child, a granddaughter younger than her great grandchildren. Her grandfather Richard would be smitten with her sweet smile and air kisses.
YES, CHRISTENE Lynn was born with difficulties to overcome. Down Syndrome is not for sissies. But luckily, she was born into a family willing to share the challenge and joys.
Christena in the writer's arms, with her uncle Rick (in blue)
and from left, her auntie Olivia, father Patrick, auntie Misha.
Early treatment --  including speech, physical and occupational thearapy -- is essential to improving a Down Syndrome child's chances. Christena's therapists commend Patrick for seeking support and treatment the week of her birth, giving Christena a good chance at a happy, productive "normal" life.
Sometimes, I hear Patrick reading her to sleep when I'm overnighting at the Billings house family members share.
HE READS with expression and I hear him answering Christena's questions:  "What's that?"  "That's a deer."
"What's that?" "It's a rabbit."
A bird. A cat.  A tree. A puppy. "Nick and Nora?" she asks.
 Christena Lynn Cosgriffe on her way to sweet dreams. 
PATRICK IS old enough to be her grandfather. He knows that as she ages, her problems may multiply. But for now, she's thriving. Each Down Syndrome child is different. So is each parent. Patrick has devotion and discipline in spades.
I WITNESS that as he tucks her in at night, and wishes her "sweet dreams."
We accept that Christena has Down Syndrome. She also has love, love, love. The Beatles song tells us that's all we need.
Patrick and Christena have that in abundance. And they have the Cosgriffe "Village" staunchly in place behind them.



The Bair Museum is one of the enticements in Martinsdale.


COMING UP: With Pope Francis visiting Brazil and Egypt in turmoil, we examine the cultures and speculate on the excitement and challenge of change sweeping this pair of intriguing countries, both recently visited by the writer and photographer.
And we look at a small Montana town in  summertime splendor as we visit Martinsdale's Crazy Mountain Inn and Bair Museum.
Remember to explore, learn and live, and check us out Wednesdays and Saturdays at:
www.whereiscookie.com.

1 comment:

  1. Christena IS a love--pure and simple. And she will give as much to the Richard and Ellen Cosgriffes as they are giving to her. Wonderful to read about her. Thanks, Cookie. Kathleen

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