It takes a village to raise a Down Syndrome child -- and we have one!

Christena Robbie Cosgriffe and her auntie Christene "Cookie" Cosgriffe Meyers last weekend.
The child has both special needs and special gifts and is surrounded by a "village" of loving support.

CARE OF CHRISTENA INVOLVES DOCTORS, LAWYERS, THERAPISTS, TEACHERS AND SUPPORT FROM HER LOVING FAMILY 

STORY By CHRISTENE MEYERS
PHOTOS By BRUCE KELLER

Christena beams recently at a gathering for her
12th birthday, here with her Uncle Keller.

Christena in red tutu poses at dance class.
At left is her now legal mother, Diane daughter
Dani, granddaughter Lila and other family.
 

THE DAY Christena was born, her nurse confirmed what we suspected: she has Down Syndrome. The family asked the birth mother to have the recommended amniocentesis, to confirm possible birth defects  and give us time to prepare. She refused.

So we took the news on the chin, admiring a beautiful baby -- our niece.  We began contacting special education support which we knew would be essential in making the most of her life.
WHEN MY brother Patrick announced the surprise pregnancy and his impending fatherhood to the family, he was nearing 50.  He and his late wife thought he was not capable of fathering a child; Christena's birth mother assured him she could not conceive.  She was 45. Back then, in 2009, we knew little about the mother-to-be or Down Syndrome. We began to do homework, suspecting what we might be dealing with.
RESEARCHERS know that the extra copy of chromosome 21 comes from the mother's egg and can be related to the mother's age. All that is water under the bridge, long past. The "now" part of the equation is that we have a child with special needs. We love her dearly, she is thriving with our abundant help, and we intend to keep her safe, cared for and beloved in our village.

Her chromosomal condition is often associated with intellectual disability, a characteristic facial appearance, and weak muscle tone called hypotonia. All "DS" people experience cognitive delays, but the intellectual disability varies. We were happy to hear that, because our intent was and is to work with Christena on every level possible. 

We were told she might not be able to read or write. 

Christena's father, Patrick, with his beloved Christena.
This was the occasion of her first birthday. 

She does both with ease, thanks to our tutoring.
She has vision issues and wears glasses, needs her ear canals cleaned frequently because hers are very narrow -- part of the birth defect.  She has permanent numbness on the right side of her mouth, which influences her speech.

THE DOWN Syndrome child has an extra chromosome -- 47.  Most of us are born with 46.  Characteristics besides low muscle tone include small stature, and an upward slant to the eyes, both of which Christena has.  She wore special orthopedic shoes for her first few years but no longer needs them, thanks to physical therapy to improve strength and balance. She has a continually curious look,  a mischievous smile and sometimes shaky hands.

She has struggled to overcome her problems. Walking and moving are easier now and she dances daily. I've found a piano teacher who will take on a special needs child. All thanks to our "village" and patient TLC. 

Loss of Christena's father, click here

CHRISTENA'S BIRTH mother kidnapped her when she was less than a year old, took her to rural California and after losing a court battle for guardianship has not been present in Christena's life for 11 years, except for rare visits and occasional gifts of ice cream and other enticements. The child's now legal mother is Diane, my late brother Patrick's longtime partner.  Her role in Christena's life was confirmed by Judge Moses in a recent court decision. Our attorney, Jeff Turner, did a fine research job, expertly confirming the love and complex care surrounding Christena in Montana. 

Auntie Jane and Christena
at a Halloween party. 

Diane was Patrick's fiancée and she has grieved deeply since his Feb. 5 death from COVID and complications.  They had planned to marry this summer, and his absence in their family of three is profoundly felt by all of us in the larger, extended clan. The birth mother's improved, approved involvement is welcome. We shall see.

Auntie Olivia and Christena play.

CHRISTENA IS sometimes sad. "I miss daddy," she 

says. We aren't sure exactly what's going on in her young head.  But she'll continue to be surrounded by love -- from her aunties, uncle, cousins, friends, school mates and "mama Diane," as she calls her.  Although Diane has grown children and grandchildren of her own, she adores Christena and has been her sole mother figure for the past nearly six years.  She considers Christena, "as beloved as if she were my own flesh and blood." She told the court this in a recent guardianship hearing.

 The birth mother's attempt to keep the child in Anza, California, where she kidnapped her for a brief time in 2011, failed. 

Christena's first years, click here 

AFTER TESTIMONY

Christena with her mama Diane,
auntie Cookie and Yorkie Nick.

 and depositions by myself, Christena's lifelong pediatrician and others, the judge ruled that Christena stays in Montana. Diane wept. All of us were teary-eyed, for we love Diane and greatly appreciate her tending to our niece's needs. She and Patrick raised Christena for the past six years, and now with help from our family and Diane's, the bonds continue. Christena has aunties, uncles, cousins and new sisters and loving grandparents in Diane's family! Though her early years were fraught with hospital stays, doctor visits, surgeries for lung and respiratory problems, and constant monitoring of a heart condition, both her physical and mental condition are improved. 

Yet, caring for her is a full-time job.  When Patrick was alive and a single parent -- before his decline from more than 14 surgeries and hospital visits -- he spent much time taking her to doctors. He worked with speech therapists, monitoring Christena's progress, finding people to help improve her walking, speaking and balance. He faithfully lined up her medical and dental appointments, read to her morning and night, cooked, cleaned and kept her immaculate. He was an exemplary father, returning to school and graduating college with a double major and high honors.

Christena with family, from left: auntie Jane,
mama Diane, uncle Rick, auntie Misha.

 WHEN DIANE entered the family six years ago, she quickly assumed maternal duties, working with Patrick to teach Christena to read and write.  They enrolled her in special education classes where she excels now at Castle Rock in Billings. She serves coffee and counts change at weekly faculty gatherings and has become a mentor to other handicapped children.  She seldom falls or trips now -- initially she frequently lost her footing.  She was and is a happy child -- affectionate and grateful for her family.

She loves to dance, sing and dress up.  Our musical family has a lifelong tradition of theater, so this is a natural for us. Her Christmas present from us last year was tickets for her and her mama to Shen Yun at the Alberta Bair Theater.  Said Diane, "I could hardly keep her in her seat.  She wanted

Christena with her mama, aunties and uncles
at a recent dinner celebrating a court ruling
that she remain with "mama Diane" and our family.

to go dance on stage."

At family suppers, Christena says grace, thanking the Lord for her parents, her family.  

Her dedicated "village" includes special ed teachers, physical therapists, occupational and speech therapists, psychologists, vision specialists, nurses and social workers.

She learns from them -- and in turn, we learn from her, for Christena teaches us all. From her we learn the virtues of patience, understanding, perseverance -- and LOVE!

 Interested in the fundraiser for Christena's care and education? 

Christena's future, Patrick's wishes 

Even on holidays, faithful food service workers and hospital staffs must be 
open for business. This woman and her co-workers cheerfully serve
meals 365 days a year for patients at Montana's Billings Clinic Hospital.

UP NEXT: As Labor Day approaches, we take the opportunity to express our appreciation for the tireless workers who serve us and tend to our needs 365 days a year, including holidays. We're thankful for our health care workers, restaurant and entertainment workers, gas station attendants, tour guides, bus and taxi drivers, and policemen and women.  From transportation to travel, dining, health and more we offer a special Labor Day salute to the people in our lives who help us through daily rituals, appointments, and life's unexpected events. Meanwhile, remember to explore, learn and live and catch us weekly for a fresh spin on health (mental and physical), the arts, nature, family and more. Please share:

www.whereiscookie.com