Down syndrome · Down's Syndrome · gratitude · motherhood · Parenthood · thankful · twins · Upsyndrome

Up Syndrome

I often have moments, when I am with Bonnie and Isla, where I stop and look at them. Most parents think to themselves ‘Wow, they’re all mine’, or ‘I made them!’, and alongside these thoughts, I find myself sending thanks- in the direction of the clouds- perhaps to God I’m still not too sure about- that my beautiful girls have been born healthy. Of course, this is a normal thought, and you can be certain that every parent whose child has been born a healthy little babe, has thought this too. But for me, I am sending my thanks on a daily basis.

I work within the learning disability sector, and I love my job. I spend half of my week working alongside some spectacular characters whose views on life and comedic ways often leave me stunned, while going home with a smile on my face. I also see their struggles. In a nutshell, our aim in what we do is to help these adults gain skills to enable them to enter ‘the working world’, alongside the laughs we often have, are the struggles. Many trainees move on to employment and find something that makes them happy, others may move on but can often return due to many reasons; perhaps their own health needs have made it difficult for them to attend work; perhaps the job was too challenging etc. And then there are those who are yet to find something suitable, you worry for them and hope it all works out. But often, confidence can be damaged, and taint that wonderful view on life.

So, at the end of the day, good or bad, I return home to Bonnie and Isla, and am rest assured that they will not have such hindering struggles. I get to be a parent who doesn’t have to worry how the world will respond to their childrens’ disabilities, or wonder how that child will respond to their own disabilities; how that disability will shape them; how it may damage them; and how will they cope with it. Although for my own parents, this was not the case…

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…Paul Edward Vaughan is my brother, seventeen months my junior, and Paul was born with Down’s Syndrome. I recall my mum telling me about Paul’s birth, she spoke of hearing those first cries, of knowing she had a healthy child with healthy lungs, she told me about the moment her newborn bundle was placed upon her chest, and what came with it was an apology. An apology from the doctor to my mother, because she had just given birth to a child with Down’s Syndrome.

“Why are you sorry?” My mother asked, “Because he is wonderful!” 

And so he is.

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Yes, I am lucky to not have to worry about Bonnie and Isla being challenged with a disability, but on the contrary I am so lucky to have Paul as my brother, and to also work with such unique individuals in my job.

Growing up with Paul, especially so close in age, I never viewed Paul as ‘different’. When mum took us out, I asked her why people would stare at Paul. I didn’t think twice when I met someone else with a disability, and if anything, I wondered why every family didn’t have a loving member like Paul.

As Paul grew older, he was faced with many health challenges, his needs became more complex, and even as a child, my sisters and I had to pitch in and help out mum however we could.

Paul’s attitude has always inspired me. He has no awareness that he himself is any different to you or I, he has no inhibitions, resulting him in not giving a crap about the strangers staring in the street, the fact that he will never drive a car, own his own house, or raise a family. And thankfully, for this attitude, I do not have to worry about Paul being impacted by the negative views some people hold in the world, or feel any different when people stare or pass comment. He has a protective bubble around him, in which his world exists, and I find it truly beautiful.

Paul has always been the centre of our family, he has taught me so many things; he has taught me not to care what others think; he has taught me to embrace all of life’s challenges and never ask ‘why me?’; he has taught me to be maternal from a very early age, which helped with my double whammy introduction of motherhood…

… And so I find myself, yet again, being thankful everyday- not to the God I’m not so sure about- but to Paul himself, and to Paul for being exactly how he is. How lucky I am that Bonnie and Isla will have Paul as their uncle, and have him to teach them all of the things he has taught me throughout life, that no classroom or anyone else could teach.

We are the lucky ones.

 

 

 

 

 

 

 

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