Sharon, if I had some crazy socks, I’d wear them. I promise you, I’ll find some to silly socks to celebrate World Down Syndrome Day.
Back in 1970, when my youngest sister was born, the term used to describe her condition was “retarded.” I still bristle when I hear that word. My ten-year-old self was horrified to think people would call my sister – or anyone else – that.
In 1970, when my youngest sister was born, the term used to describe her condition was “retarded.” I still bristle when I hear that word. #WDSD2018 Click To Tweet
That feeling hasn’t changed.
It has been almost 50 years, but I can recall the day my dad came home from the hospital and said, “Something’s wrong.” He proceeded to tell me her condition, and that she was baptized immediately.
Due to her multitude of health issues, little Sharon’s future looked bleak. She had a feeding tube, and spells where she’d turn blue.
I remember going to see her at what I called the nursing home. It was a good-sized house with a kind woman who had a staff of people caring for babies, such as Sharon. The nursing assistant taught me how to balance my sister in my left arm and hold the baby bottle attached to the feeding tube in my right hand. I was so careful, as I didn’t want to hurt her. I remember hearing my parents talk to their parents about nursing homes and future care. I remember seeing a girl in our neighborhood – one who had the same diagnosis as Sharon – riding around on a big wheel, which gave me hope for my sister. I remember being jealous of one of my friends pushing her baby sister in a stroller – something I wasn’t able to do.
At five-months old, Sharon drew her last breath, cradled in the arms of our mother.
As a ten-year-old – about the age of my granddaughters right now – I heard so many things. I remember hearing my grandmother and great-aunts say that my dad blamed himself for her death, due to his past mistakes. I heard other relatives talk about only one-other disabled baby in the family, in a country in a far-away land. They spoked in hushed voices, but being as inquisitive as I was, I strained to hear as much as I could.
I remember the family, friends and neighbors who supported my parents at Sharon’s birth were the same who were there, a few months later, supporting them in her death.
I remember the smell of the funeral home, the tiny casket and the wicked blizzard that raged the day of her funeral, forcing my brother and I to sit in the car with one of our older relatives – maybe a great-grandmother – during the interment. When the weather was better, we went to the cemetery to see her little headstone, which read, “Our little angel.”
I remember memorizing the Bible verse, “Suffer little children to come unto me, and forbid them not, for of such is the kingdom of God,” Matthew 19:14 (KJV) – the verse that was on her prayer card that I keep in my top drawer, along with her newborn picture and a pair of booties that I believe were hers.
I remember the day my mom was hired to work at a non-profit agency for children with Down Syndrome. They provided art and music therapy, and it began to open the doors for families. In less than a decade after Sharon’s birth, I saw hope – a huge shift in people’s attitudes, realizing that people with DS were people – with skills and talents and the ability to learn. I was proud of my mom for being such a strong person. She may not have led the change, but she was sure in the movement to make things better for others.
I remember working for a church that made a commitment to young adults with DS to come in and work; and how they were so happy to come in and organize hymnals, clean, and have a job – and a sense of purpose.
I remember feeling so relieved that options and organizations that weren’t available to my parents – and so many others – were now available. And that support continues to grow.
Sharon, I want you to know how much the world has changed, and how people like our parents and the families of so many others brought about those changes. How they took up the charge to provide a quality of life for their children. They showed the world just how valuable all life is. That the days of being stuck in a “home” are pretty much a thing of the past.
And Sharon, I am on the search for a pair of crazy socks to wear in your honor and memory. Your niece has a collection of them, and until I get my own, I know she’ll be happy to share.
We’ll never know the “whys” of that chapter of our lives, but we do know this: that some very positive growth came from the pain. We were all better for the short time we had with you, our little angel.
Your big sis xo
© Lynne Cobb – 2018