On 2 March, 2006, I said goodbye to an ideal and faced my most difficult lessons in vulnerability, courage, and letting go of perfection, and I gave birth to my daughter Ruby who has Down Syndrome.
Every 21 March, we celebrate World Down Syndrome Day. I can still remember that very first walk around Safa Park in Dubai (where I had Ruby) 12 years ago where my flesh felt tender, and my soul even more so. Pushing this tiny bundle of chromosomal wonder around I was hoping I wouldn’t have a breakdown. Turns out I was still coming to grips with the idea of a giving birth to a child that I had not dreamed of, nor asked for. There may or may not have been a sand storm that day, but one thing I know for sure is that I wore my sunglasses even though it was overcast (in case of a sandstorm approaching of course…).
I’ve written about my journey with Down Syndrome and this incredible human being many times before, but one thing I’ve never really expressed is a fear that most of us come across in our lifetime. It is that deep seated small voice of insecurity that resides in our social programming. The “What if they don’t like me?”, or “What if I don’t get chosen?”, or even “Am I good enough?”.
Inclusion is a huge buzz word that seems to percolate and drip feed into conversations, particularly when discussing education. Going back 12 years ago, I can still feel my skin tightening in resistance to the cold metal surface that lay beneath me as the recovery room feel silent and they whisked my baby away. There was an eery calm that fell over the room that day, and it was not until the words “Down Syndrome” were uttered, that the cold amplified through my veins. My mind raced with visions of my child sitting alone in the playground, or even worse being bullied.
“What if they don’t include her?”
Ruby recently celebrated her 12th birthday with a disco at home. We invited her whole class plus a few others, and were so happy to see almost every single child attend her party. There were boys in Ruby’s class that don’t normally attend girls birthday parties. Their mums went out of their way to tell me that it was really important to them that they attend Ruby’s party. I cannot tell you the joy I felt seeing my girl playing with 20 some odd other children here at home, dancing, singing, swinging and eating pizza on her special day. Ruby has been blessed with some incredible friends, and it is by inclusion and integration in her classroom that these friendships have developed over the past few years. There is no pity party here. These kids genuinely love Ruby for who she is and see her gifts so beautifully.
Our biggest challenges lie in educating adults when it comes to the potential and abilities that are held in our daughter’s DNA. The fears I had of children being unkind or cruel are no match for the relentless truth of pursuing the true goal of inclusion in the adult world. We are getting there, but it is not without continuous championing and advocating for our children that this will become a reality.
I am grateful for how far we’ve come, but what warms my heart the most, is that these beautiful children that surround Ruby with their love are the leaders of the future. I just wish their time to lead would come sooner! They do the most beautiful job of including, nurturing, understanding, and loving our daughter.
Twelve years on, it’s a an honour to walk this path and educate, advocate, and mainstream beauty in difference.
For more information on the advocacy work Stephanie is passionate about, please visit www.iammostextraordinary.com.