"You finally get to bring home your baby," she added smiling brightly.
I looked at the pretty young woman and lied through my teeth.
"Yes, I am, " I answered. But deep down inside, I was terrified.
I left the hospital with my newborn infant and a one-page description of a bizarre and frightening disease called Prader Willi Syndrome.
At home, Internet research listed nothing but horrific descriptions of individuals plagued with insatiable appetites, uncontrollable behavior, and morbid obesity. Scholarly articles described the clinical aspects of PWS with gruesome pleasure, documenting disturbing issues of skin picking, OCD and self injurious behaviors. The more I read, the more it seemed that the tiny infant I discharged from the NICU was destined to become a monster.
I was scared.
Family and friends who supported me throughout my life were now, like me, unprepared and unfamiliar with this strange and devastating new disease. They too were suffering. And although they offered me their love and support; they could not provide me with what I needed most....familiarity and instruction.
The astute physicians at Children's Hospital outlined the physical aspects of the disease but they too were overwhelmingly unprepared to educate me on the reality of what life would be like living with PWS.
The future looked so very frightening.
I turned once again to the Internet where I found several communities devoted to serving parents of children diagnosed with PWS.
These small groups of strangers suddenly became my lifeline.
From these parents, I learned how to feed a child who was too weak to eat.
I learned about important new therapies, supplements and medications that would improve the strength of my weakened son.
As he grew, I learned how to diffuse behavioral meltdowns, lock kitchen cabinets and soothe scratched skin.
I was provided with instruction, support, and a deep understanding of the overwhelming challenges we faced.
Like soldiers who serve on the battlefield together, these individuals became my family.
And much like the dynamics in a "typical" family, we are, at times, dysfunctional, lashing out and dumping our frustrations on those who share our deepest wounds. But like this family, when we share our difficulties we also become stronger.
From these invaluable fellow parents, I learned how to raise a child with an incurable disease.
I learned that despite my son's terrible diagnosis, a happy and fulfilling life was possible.
This is Fred, Amber, Chris, Alberta, Denise and Fred Jr. Although I have never met them, their journey living with PWS has given me much hope and inspiration.
Although she is Chris's daughter, Alberta and Fred (her grandparents) have raised her.
Now in their 70's, Alberta and Fred first met at school when they were 10-years-old, where Fred abruptly announced to his fellow classmates,
"That's the girl I'm going to marry!"
Married for almost 60 years, they have raised three children, and fostered several more. They have 6 grand children and 12 great grand children.
Alberta explains that Amber learned to walk when she was 3-years-old. But since that time she has not stopped moving. As a child, she participated first in dance classes and then in a martial arts program where she earned an orange belt. She started bowling when she was five and continued to play throughout high school, earning the highest average.
"We are so blessed with what she can do," explains Alberta recalling when Amber was a small child and begged to ride the roller coaster at the amusement park in Virginia.
"I can still hear her yelling RIDE, RIDE!"
Amber and her family continue their thrill-seeking adventures. This summer, they rode a series of zip lines across a canyon and over the Snake River in Idaho, where according to Alberta.
"Amber was the first one to ride on all of the lines."
Keep in mind Alberta and Fred are in their 70's!
Alberta and Fred love to travel and exposed their daughter to this adventuresome lifestyle at a young age. They traveled in the US from coast to coast with Amber in a backpack or stroller. When she got older, they visited places around the world, like Rome, Australia, Alaska, Mexico and Jamaica.
Alberta, Amber and Fred in Rome
"She rode in the back of a jeep with birds flying at us, down a dusty road in Jamaica and helped paddle a raft down a back river in Cozumel." explains Alberta.
They have encouraged Amber to become independent.
"She has been to camp for almost 20 years, traveling 12 hours each way to get there, we try to expand her mind."
Currently, Amber continues her active lifestyle. She loves to ride horses and participates in shows where she earned ribbons this year in pole bending and barrel events.
She continues to enjoy bowling. She is in an adult league where she has participated for 10 years, earning a high average of 160.
In the summer, you may find her swimming in her pool at home.
And although I have never met this family, they have given me the precious gift of hope for my son and his happy future.
How do you thank someone for this?
Life is a daring adventure or nothing at all. - Helen Keller
Lisa Peters writes about family life at www.onalifelessperfect.blogspot.com. To learn more about Prader Willi Syndrome please visit our national organization at www.pwsausa.org.
Thank you for reading.