What If They Don’t Include Her?

For the past 12 years, March has been a pivotal month.

On the 2nd of March in 2006, I said goodbye to an ideal, and faced my most difficult lessons in vulnerability, courage, and letting go of perfection, when I gave birth to my daughter Ruby who has Down Syndrome.

In Dubai, March usually ushers in the warmer weather, with skies becoming clearer just for a short time before the air is filled with fragments of gold dust (or to take the glamour out of it, we see more sand storms!). Every March 21st, we celebrate World Down Syndrome Day. I can still remember that very first walk around Safa Park 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, or 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 here in Dubai. 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?”

My own insecurities bubbled to the surface with memories of being bullied in Kindergarten, then again in 6th grade. Perhaps there were more times, but I think we tend to bottle those painful memories in our subconscious and hope they never rise again to hurt us.

Rise and bubble. Rise and simmer. Rise…

“What if they DON’T INCLUDE HER?”

Down Syndrome, otherwise known as Trisomy 21 is a genetic condition affecting the 21st pair of chromosomes. In this case, there are 3, so a lucky dip if you like. From where I’m standing, I can tell you that even though the text books paint a grim picture of what life with Down Syndrome may look like, never underestimate the power of that extra chromosome. The emotional intelligence, sharp intuitive senses, and ability to connect on the deepest level far outweigh any delays in walking, talking, or academic achievement. Of course there are people like my friend Emmanuel Joseph who has Down Syndrome, is a polyglot (speaks 9 languages), plays 3 instruments, has played gold on the PGA circuit. He is also an international advocate who travels the world to share his story. I wish someone had told me about him as I was nursing those insecurities!

Ruby is in Year 6 in mainstream school. The journey has been long, arduous, victorious, and joyful all at once. Inclusion is still figuring itself out. We are advocating for equality where we can, and we will continue to do so. Having 2 other beautiful girls has allowed us to see the similarities and differences that parenting a child like Ruby brings. In most cases, I can tell you there is no difference at all, but then of course in my experience, I can also say that parenting Ruby has been one of the hardest jobs I have ever done in my life, but who is to say that this wouldn’t be the case if she didn’t have Down Syndrome? Many of our challenges with her may be perhaps due to her personality traits, and not Down Syndrome itself?

One thing I can say for sure is that parenting a “person of determination” breeds certain qualities in their siblings. Our two girls Olivia 16, and Lily 8 certainly have fostered compassion, empathy, resilience, and tolerance to the highest degree. These are qualities that I know will be of great use in the future in this ever changing world, and for that I am grateful.

So back to my question and my greatest fears….

“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. 0F7A1544 0F7A1549

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.

Happy World Down Syndrome Day! 12 years on, it is a an honour to walk this path and educate, advocate, and mainstream beauty in difference.