A day for gettin’ Down…It’s a celebration, bishes!
Before having Aisha, I never had a cause.
Several friends and loved ones have been affected by, or lost their lives to various illnesses such as depression, cancer, heart disease, HIV/AIDS, Multiple Sclerosis, Parkinson’s or Alzheimer’s. Others have children with autism, cleft palate, juvenile diabetes, ADHD, or seizure-related disorders.
I have sympathized and sent condolences, offered words of support (or in some cases, attended funerals) and on occasion written about the battles won and lost by the people I’ve known. Yet in doing so, I never felt “close” to the situation – even when it was one of my own fighting the good fight.
Aisha’s pre-natal diagnosis of Trisomy 21 changed all of that.
As her mother, I wanted to learn all that I could about her condition, and what I could do to ensure that she would receive the best possible care, in turn ensuring her optimal quality of life now and for the future. As a writer, I knew that one of the ways I could help her was to go public about her having Down Syndrome, talking about it openly and often. Culturally speaking, I am an anomaly, for I know that many families of colour tend to hide their differently-abled/special needs children out of fear and shame.
I am not, and never have been ashamed of Aisha’s condition.
She is only a month old, but so far she is a absolute darling. NOT because she falls into some kind of stereotype that people have of kids with Down syndrome, but because she happens to be a good-natured baby (she gets it from her mama. heh). Even at this early stage, she is demonstrating a bit of a stubborn streak (again, from her mama), and I’ve no doubt that her sweet – and sour – sides will continue to manifest as she grows from infant, to toddler into little girl.
I wrote an article on the parenting website mommyish.com describing the events and emotions leading up to her diagnosis. When I was approached to write for the site, I jumped at the chance to expand my portfolio, however, it was actually the editor who suggested that I introduce myself with the story of how Aisha came to be – from meeting her father, to her diagnosis, and the days leading up to her delivery.
The response to that article (and this blog – thank you all) has been the driving force for me to advocate for my little girl. All that having been said, today is World Down Syndrome Day. The date, 3/21 symbolizes the third replication of the 21st chromosome – the genetic mutation that causes Trisomy 21, the most common type of Down syndrome. According to the official website, the purpose of this day is “to help raise awareness of what Down Syndrome is, what it means to have Down syndrome, and how people with Down syndrome pla a vital role in our lives and communities.”
Attitudes toward individuals with Down syndrome have, and continue to change, but I know just from the types of comments I hear on a regular basis (more on that in future post), that there is a long way to go in altering societal perceptions about persons with special needs.
And this is why I write.
Before having Aisha, I only knew of one or two people who had relatives with the condition. And they were kept hidden, like some kind of dark family secret that no one wanted to address. I have always been open and upfront about my daughter’s condition, and instead of being sad about it, I have chosen to celebrate the beautiful baby I gave birth to a month ago, and look forward with genuine excitement at the little girl – and eventually, adult – that she will become.
Aisha is not her condition. She is a little girl, with a unique personality and characteristics, and the extent of her challenges on account of an extra chromosome has yet to be seen. However, I plan to treat her like any other kid, and I will continue to advocate on her behalf for everyone else to do the same.