Over the next 48 hours, I binge watched Youtube and every single clip that had anything to do with Down syndrome (Ds). I watched countless families stories, a day-in-the-life-of home videos, educational clips about Ds, and the options went on and on. Some of the videos were encouraging, hopeful and honest. Others were discouraging, ambiguous and painful to take in. Among them, was this short family story that touched my heart in a meaningful way.
I also binge-read every book we had been given by our genetic counselor, Tanya. There were books about how to tell family and friends about the diagnosis. There were books written by families with children who had Ds. There was a book of stories of families who were given a Ds diagnosis and they detailed their personal experiences of receiving the news. If you’re reading this because you too have a Ds diagnosis for your little one, this book is worth having. I read The Parent’s Guide to Down Syndrome: Advice, Information, Inspiration, and Support for Raising Your Child from Diagnosis through Adulthood which proved to be the most informative and resourcing book. If you’re reading this because you too have a Ds diagnosis for your little one, this book is worth having. My book collection had grown exponentially. And just when I felt I’d got a handle on the books, I began to order new books on Amazon….
TED offers many intelligent and experienced people discussing disabilities. Our Pediatrician had suggested we watch this talk, by a mother of a little girl named Fiona who was born with a chromosomal abnormality. It gave us a unique perspective of our built-in perspective of ‘good’ and ‘bad’, and it challenged how we view the journey ahead of us. It’s worth watching.
And then, of course, there was social media and the handful of Facebook groups for families of children with Ds. I was adding myself to these groups without hesitation and grasping for knowledge and understanding for this path I found myself on. Google offered countless articles, blogs and resources to read and I somehow couldn’t stop myself.
After days of this, I would lay my spinning head on my pillow, and as the quietness filled my mind, I’d frantically realize there was so much I had yet to know. I would fall asleep reading the long threads and mothers comments on facebook posts in the Ds groups. The blue glow of my phone would eventually watch me sleep…I was dreaming of my baby.