Sometimes you meet someone and just realise there’s a connection. This was certainly the case when I met Ange online through a Down syndrome writers forum. While not really knowing each other from a bar of soap, I felt very honoured that she and her family went out of their way to meet us in person and share a meal while they were holidaying in Queensland. And I felt even more honoured when they flew from interstate to be with us as we celebrated Nicholas’ life in May. Today, I am proud to share Ange’s thoughts on awareness as our very first guest post this month. Thank you Ange x
Ash is lying down fast asleep close by me, he is unwell with a fever and what my gut feeling says is a viral bug.
Sickness is tricky and induces self doubt even after six years. Our little guy is non verbal and can’t tell me (yet) where it hurts or what he needs. I must do the guesswork and figure out what he needs to get better. This is where the self doubt part kicks in because no matter how in tune I have become to reading his body language and babble, I feel immense fear when Ash is unwell. It’s a fear that I carry deep inside but rarely communicate out loud because sometimes it is hard to say what ‘lays beneath’ as a Mum of a child with special needs.
In considering (and overthinking) a topic to write about for Down syndrome awareness month, inspiration tapped me on the shoulder this morning and brought focus to the word ‘awareness’. What does it mean to be aware and to have awareness of Down syndrome?Awareness, by definition, means ‘having knowledge or perception of a situation or fact and to be concerned and well informed about a particular situation or development’. Synonyms include ‘conscious of, acquainted with, informed about, apprised of, sensitive to’…you get the idea.
If you are an outsider looking in and know nothing about Down syndrome, let me share with you how Ash has made me aware. Come and take a closer look from one Mum’s perspective…
When Ash was born, he made me aware that Down syndrome wasn’t scary. That is not to make light of the very real and overwhelming emotions we felt upon receiving a prenatal diagnosis of Down syndrome. But all the reading and fear of the unknown couldn’t take away from the perfect newborn boy who was placed in my arms. My baby was just that..my baby. He was not and is not Down syndrome. That was my first enlightening lesson in awareness.
When Ash’s heart started to fail soon after birth due to congenital heart disease, he made me aware of the fragility of life and what it meant to love some one with every piece of my being. From the moment the surgeon successfully operated on my tiny boy’s heart, I became aware of new beginnings.
He has made me aware of the goodness and kindness that exists. Because when I reached out to find other parents who had kids with Down syndrome, I became surrounded by my new crew. Strangers who became my friends, knowledge bearers, relief givers, the ones who understood without me having to say a word. I was not aware of the most amazing, loving community that was awaiting us.
He made me aware that his own path would be different and unique to his peers who also have Down syndrome. Let me give you a big insider tip… kids with Down syndrome are not all the same, not always happy and just because our kids may have limited verbalisation or be hard to understand does not mean they cannot understand you and feel every emotion that comes with being human.
Ash made me aware from a very early stage that being his mum would be my greatest source of challenge, fear, pride, uncertainty, joy and opportunity for personal growth. I remember my beloved Dad saying to me a while back that Ash is exactly what I needed for my own growth and those words still ring true. The term ‘everything happens for a reason’ irritates me. But I do believe that we are each dealt different cards in our life – some great and some not so great – and our own perspective and the way we face adversity determines how we deal with those cards. While I initially rated receiving news that our son would have Down syndrome as a not-so-great hand of cards, I soon realised that it was my own ignorance and fear standing in the way of realising I had, in fact, been dealt the most amazing hand. Ash has brought so much good to our family and him having Down syndrome has brought not only good people but the right people into our lives.
He has made me aware of what acceptance means. Ash accepts everyone for who they are. He is one emotionally intelligent boy who smiles at strangers without expectation of anything in return. He is also accepting of my shortcomings as a mum, when I don’t get it right or can’t understand his needs. Acceptance and forgiveness are surely the most beautiful attributes to have in this life and Ash has them in spades.
Ash having Down syndrome has made me aware of the lack of acceptance that exists in our community. While I feel safe in our special needs community, outside this circle can feel brutal and intolerant of difference.
He has made me aware that no matter how hard I beat my proverbial chest with pride at having a son with Down syndrome, ignorance and intolerance is alive and fierce. Prenatal screening has become so advanced that my boy may be part of the last generation of people born with Down syndrome. Some European countries boast of being almost Down syndrome “free”. Orphanages are full of children abandoned because of their diagnosis. Our kids are viewed by some as a tax burden, as being less than and not contributing to society.
Ash has made me aware that October is our month to shout out loud that we are proud beyond measure of our kids. We are willing to fight for our kids right to exist in this world with dignity, respect and equality.
He has made me aware of the meaning of pure beauty, as it beams out of his smile and almond shaped eyes everyday…
Ange is a lover of writing, photography and Down syndrome awareness. She is Mum to Ash and Jessie and wife to a good man who loves his family and smoking meat. She blogs about family, her favourite things and being different at Different Coloured Crayons, and you can also find her on Instagram.
