It happened to me. Ten years ago someone posed a question that was sacred ground and should never have been asked. Shocking… to the point where I was left speechless, which rarely happens. My daughter Sunshine, who has since been diagnosed with severe cerebral palsy and profoundly deaf, may have only been twelve months old at the time. She was becoming more stable and her six-month stay in the NICU had thankfully ended. Emergency runs to the hospital were becoming slightly less frequent but it was still a mind-boggling stressful journey with no end in sight.
Here is how the benign conversation turned noxious. I was standing next to a man in a busy public space who I knew only by acquaintance. He asked me how my daughter Sunshine was doing. I delivered my usual rehearsed blurb that allowed me to congenially converse but stay emotionally aloof; a self-preservation technique that many reading this blog will relate to. Then I heard the sacred question roll off the tongue like a comment on the weather, “Do you think Sunshine would have been better off if she had passed away?” I coughed and spluttered through the conversation – I don’t even remember what I said.
Since that time (now ten years later) I have often contemplated that question and the motivation or values that man may have held. The question told me a lot about him but also the status of society and even myself. Interestingly I wasn’t angry at the time, and when I think about him now I actually feel sorry for him. Part of the reason I don’t feel angry with him is I can’t profess with a clean heart that I hadn’t thought the
same thing. In the early days when my two pound daughter would arch her back
from excruciating pain I found myself conflicted. As the drugs refused to work
and the heart apnea continued on like a militant regime, I did wonder… I wondered if it was right that any human should suffer like this. There is no hiding the fact that the question should never have been asked of me, but the crass confrontation did prompt me to consider my own secret thoughts, albeit unwelcome and terribly confronting.
Insensitive questions like this irritate the disability community but it simply reflects the tragic, modern belief that life is best when its ‘perfect’. In the early days I thought the same thing even though it wasn’t a cognitive and verbally frequented belief. I am not sure it is worth getting angry at, but rather pitied. The reason I feel sad for the person who asked this question is they don’t know what I know now. They don’t know what love feels like when it has cost you emotionally, making it truly grounded and strong. They don’t know what it feels like when a human being says a deep heartfelt ‘thank you’, not with words, but with a look that reaches into your soul and spins your emotions like a fork in spaghetti. As much as I dislike it, the human struggle seems to give love substance; it reminds me of an Australian gum tree seed that only germinates when a bush fire burns it.
Not long after that man posed the question, I began seeing another side to life that contradicted all the useless lessons I had learnt about what success was, and I am a far better person because of it. Sure, my daughter still suffers but she is mostly happy and brings more than just joy to our lives, she brings balance, substance and offers character development to those around her that can only be realised on the foundations of pain and suffering.
I would give anything to change the journey my daughter has been on, but she has shown she wants to live and because of that, she has taught me what it means for me to live – a gift beyond measure. She has taught me that money means nothing and beauty is barely skin deep. The only reason I scoff at the world’s vain strive for perfection is because Sunshine has taught me this unpopular reality – only those who have paid a price to love someone have ever really loved at all. It isn’t something you can purchase on a
shelf, it has to be experienced and it has to hurt.
People with a disability bring the stark truth to a conversation – there is no room for pretence. They encourage those around to sacrifice and express a love that confronts selfishness, which is often at the root of all bad things. When I sacrifice in order to better the life of Sunshine, a harmonious chord resonates across the sky and humanity is somehow better. The pursuit of success whilst neglecting the less fortunate is toxic and most people would agree it is a precarious path. Perfection doesn’t make me
a better person, sacrifice does.
So the question isn’t about whether Sunshine would have been better off passing away in those early days, but rather, is the world a better place because of her? I of course already know the answer to that.