Having a child with Down Syndrome has its challenges at times. I doubt that I’d be sticking my neck out too much by suggesting that all of us parents have wished the Down Syndrome away at one time or another.
Then I imagine that I really and truly could do that. What if? What if a genie magically appeared to me one day – would that be one of my wishes? Or if I could flick a wand like Harry Potter and cast a spell – “Trisomy Expelliarmus!” – would I do it?
I imagine the next new day dawns. The sun streaming through the window. Feeling happy, unburdened, knowing that our life is back “on track”. Back to being the way we had always intended it to be. A new beginning.
I go through to greet the children. I open their bedroom door and I am confronted by a 7-year-old child that I have never met. A complete and total stranger. It feels like a violation – as if someone has broken into our home. Or like a sleepover had been arranged without my knowledge.
She is nonchalant by my presence – as 7-year-olds can be. She doesn’t shout “Daddy!” like I’d been gone a for a month. Doesn’t melt into my arms exuding love I’d not earned overnight. Doesn’t tell Alexa to play “The Greatest Showman” and perform a 7am musical in our bedroom while the rest of us laugh at the ridiculousness of the events unfolding before us.
Instead she slips by me and downstairs to put on the TV – as most 7-year-olds would do. The house feels different – more quiet for sure – but something is missing from the air.
I drop the kids off at school and the new Rosie wanders into her class, blending into the others, as most 7 year-olds would do. There’s an absence of high fives and no delighted faces as she walks by the other pupils unnoticed. Why would they? She is just like them, after all.
I feel the memories of the old Rosie begin to leave my mind one by one. The highs and lows of emotions. The triumphs as well as the challenges. It occurs to me that the magnitude of those triumphs are precisely because of the challenges – not in spite of them. I’m losing the things I’ve learned in the last 7 years. My value system is beginning to regress.
I want it to stop. I mean – it wasn’t my child that I meant to wish away! Nor aspects of myself! No no – of course not. Only the Down Syndrome – the “condition” – not the child. It occurs to me how foolish a notion that was. How stupid had I been? Because these are not separate entities where one can be kept, and the other vanished away. Down Syndrome was part of my old Rosie. It was present in literally every cell of her body. Part of the foundation of who she was – a genetic contribution to her personality, her physicality, her entire being.
Immediately I want her back. And my memories – all of them! The happy ones, the stressful ones and everything in-between. I see now that the challenges we overcome are what make us who we are.
It is true that our old Rosie was not “most 7-year-olds”. Our life was not “normal”. All of a sudden I realise that’s what I miss most of all.
When others hear us utter the phrase “Wouldn’t Change a Thing” for the first time they often appear puzzled, or adopt a facial expression that portrays some disbelief. It sounds so absolute. “Really? Not a thing?” they say (or think).
It’s worth noting what “Wouldn’t Change a Thing” doesn’t say. It doesn’t say that there exist no challenges. It doesn’t say we don’t have bad days. But the realists among us know that this goes hand-in-hand with the fact that some of the most enriching experiences we’ve ever had are also because of Down Syndrome. Life does not give you a menu where you can select only the supposed “good” bits, and the notion that those enriching high points can even exist without challenge is contradictory at best.
We should be careful what we wish for sometimes. When any of the children present me with a difficult trait – so much so that I find myself wishing that aspect of them away – I try to remember that sometimes it is best to leave that genie in the bottle.
When you really play this scenario out – one where you actually “Could” or “Would” “Change a Thing” – the very thought of the reality of it sends a shiver down my spine. It would take an army to prise away from me the actual daughter that I have. The one whose unique traits and perspective I have grown to love deeply.
That’s why, where Rosie is concerned, as would be true of most typical parents of most typical children, all of us realise deep down, when push comes to shove, given the chance, warts and all, we actually…. Wouldn’t Change a Thing.
Every October we celebrate Down Syndrome Awareness Month and in 2020 our campaign aims to tell the world #OurTruth. Check out the very first Wouldn’t Change a Thing single and music video over on our Facebook page – go on, we challenge you not to be singing it all week! Over the month we will have videos, blogs, interviews and imagery celebrating our members, who will tell us why they Wouldn’t Change A Thing about having that magical extra chromosome in their lives. Most importantly, we want you to be a part of it! Spread the word and tell us why you #WouldntChangeAThing. Our #WCAT October campaign Facebook profile frame is available here for you to join us and take part.
#OurTruth #downsyndromeawarenessmonth #WouldntChangeAThing