It’s October 31st. Tomorrow we turn the page to November. Another Down Syndrome Awareness Month is “in the books,” as my grandfather used to say. What an October we had as a community! In addition to an extraordinary celebration at the Baltimore Buddy Walk, as a group we completed the 31 for 21 Challenge.
Erika and I found out in utero that our daughter Amara had an extra chromosome. The doctor told us that she would have a myriad of health problems and would be a burden to us as her caretakers. As we soon discovered, the bleak picture this doctor painted of Amara’s life turned out to be a complete fallacy.
Over the summer, 19 people with special needs were brutally murdered and 26 injured in a facility outside of Tokyo. Some of the people killed were 70 and some 18, just two years older than Robb.
Four years ago our lives began again. On April 20th we welcomed the newest member to our family. This pregnancy was nothing like my first. The cloak of mindless pregnancy complaints and carefree certainty was removed, doused in kerosene and set ablaze.
Sean is 15 years old and attends a public high school in Carroll County. He loves making videos and wants to be a videographer.
Shortly after my son was born with Down syndrome in 2000, representatives of my local Down syndrome organization visited Downside Up, an early intervention center in Russia. When Andy was about a year old, I read their newsletter article about this trip where they reported that more than 90% of the children with Down syndrome were institutionalized in Russia and that the parents of children with Down syndrome often faced isolation and discrimination.
In 1981, just before I turned 12, my family packed our belongings and emigrated my then 15 year old brother and I from the small island of Taiwan. I had understood that I was going to learn English and live in a place very different than Taiwan, but I would not fully grasp the different trajectory my life was about to take.