Almost 17 years ago my wife and I became the parents of twin boys, and upon their birth we also discovered they both have Down syndrome (DS).
We knew almost immediately that we were in over our heads, so we reached out to our local Down syndrome association for support. A young woman came to visit us in the hospital, her name is Robin, she happens to be the mother of a son that was also born with DS, she brings us information on DS in the form of a book and pamphlets and stuff . . . what she really brings is hope and proof, proof that we can live in spite of our sons disability and hope that we will be the parents we had hoped we would be.
Robin and her husband are the parents of more than just their son with DS, they have other children and in time, they would adopt a daughter, JK. JK was given up by her birth parents because she too was born with DS and multiple other physical and genetic challenges. Robin and her husband are the perfect parents for JK, loving, understanding and willing to live with and face all the challenges JK brings to life.
Sadly, after a major surgery last week and upon returning home, JK died.
She would be 16 years old this year, a sister, daughter, friend and inspiration to all that knew her. Some years into her young life she was also diagnosed with Autism for which and because of, her mother would found the Down syndrome – Autism connection (DSASD) to serve other families faced with dual diagnosis of DSASD.
I will attend JK’s memorial service tomorrow in remembrance and celebration of her life, in honor of her mother Robin. There are few times or occasions in life that we can truly ‘return the favor’ and though my attending this service can never express my gratitude or return the life being celebrated, I will attend in honor of the time that Robin gave to my wife and me when our sons were born.