By Jamie McCallum
HAVING a child with Down Syndrome is challenging at times. I’m sure that most parents have wished the Down Syndrome away at one time or another.
Imagine that I really and truly could do that. 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. Feeling unburdened knowing that our life is back to being the way we had always intended it to be. I open the kids’ bedroom door and am confronted by a seven-year-old child that I have never met. A stranger. As if someone has broken into our home.
She is nonchalant at my presence - as seven-year-olds can be. Doesn’t shout “Daddy!” and 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 events unfolding before us.
Instead she slips downstairs to put on the TV – as most seven-year-olds would do. It’s too quiet. Something is missing from the air.
I drop the kids off at school and the new Rosie blends into the others, as most seven-year-olds would do. There’s an absence of “high fives” as she walks by the other pupils unnoticed. She is just like them after all.
The memories of the old Rosie leave my mind one by one. The highs and lows of emotions. The triumphs as well as the challenges. It occurs to me that those triumphs are precisely because of the challenges - not in spite of them. My value system begins to regress.
I want it to stop. It wasn’t my child that I meant to wish away! Nor aspects of myself! Only the Down Syndrome! How foolish a notion that was. These are not separate entities. Down Syndrome was present in literally every cell of her body. A genetic contribution to her personality, her physicality, her entire being. And to mine.
I want her back. And the memories. The happy ones, the stressful ones and everything in-between. Our old Rosie was not “most seven-year-olds”. Our life was not “normal”. That’s what I miss most of all.
When others hear us utter the phrase “wouldn’t change a thing” they often appear puzzled. “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: “There exist no challenges” or “We don’t have bad days”. But the realists among us see that life doesn’t give you a menu. The challenges we overcome are what make us who we are. Some of the most enriching experiences we’ve ever had are also because of Down Syndrome.
We should be careful what we wish for. When I find myself wishing any aspect of a child away - I try to remember that sometimes it is best to leave that genie in the bottle.
Because this scenario – where you actually “could” or “would” “change a thing” – sends a shiver down my spine. In truth, it would take an army to prise me away from the actual daughter that I have. The one whose unique traits and perspective I have grown to love deeply.
That’s why we really mean it when we say that, given the chance, we genuinely WOULDN’T Change a Thing.
Jamie McCallum, from Prestwick, is one of the founders and is currently Chairman of the parent-led Down Syndrome Awareness charity: Wouldn’t Change a Thing. He created the short video “50 Mums | 50 Kids | 1 Extra Chromosome” for World Down’s Syndrome Day in 2018 which remains one of the most popular viral videos of all time, clocking up around 400 million views on social media and featuring in national news in over 30 countries.
This has been Down Syndrome Awareness Month around the world and Wouldn’t Change a Thing’s mission is “to make negative, outdated perceptions of Down Syndrome a Thing of the past.”
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