Read it. That’s all there is to it. I loved this book and would recommend it not just to those closest to our daughter Ella, who also has Down Syndrome, but to anyone looking to become a better person. In An Uncomplicated Life, Paul Daugherty explores the complicated kaleidoscope of emotion that comes with his daughter, Jillian’s uncomplicated life. We don’t all have the privilege or opportunity to be front and centre in the life of an individual with Down Syndrome but because of this book, anyone can read about what that is like and draw wisdom and inspiration from the author’s experience. Daugherty traces the life of his daughter Jillian from her birth to her engagement to the love of her life, Ryan. He recounts the struggles, the victories and everything in between. It struck me as I read about his later conversations with friends of Jillian, that I have never heard of someone feeling as though their relationship with an individual with Down Syndrome was detrimental but rather, quite the opposite. Everyone who let Jillian into their heart benefited from her friendship – they felt that she helped them become a better person.
As a parent of a child with Down Syndrome this book struck a cord. Actually, not just one cord but many – from the twinkling major note flutters to the deepest minor cord clusters. It filled me with hope, it inspired me to keep fighting for inclusion and it gave me perspective on the challenges that lie ahead. Daugherty keeps it real. He doesn’t try to sugarcoat Jillian’s disability – he admits, its hard work. So many memoires about Down Syndrome only explore the grieving process after a child is born and while these books have their own benefits what happens after acceptance? What does life actually look like? Daugherty hits on all the major aspects of raising a child with Down Syndrome from IEP’s (Individualized Education Plans), to pre-natal testing and Down Syndrome Research, to inclusion, to sex to independent living.
I know that not every individual with Down Syndrome will live a life like Jillian Daugherty’s however, even now, at six years old, I see many similarities between my Ella and Jillian and I can only hope for some of the same experiences: going to university, finding belonging and falling in love.
I want everyone who loves Ella to read this book. When you have a child with Down Syndrome you mourn the ideals that you had for the life of your child but here is the clincher – their life might not be as you imagined but it can still be full and wonderful and rich and Jillian Daugherty’s life is the perfect example of that. I want everyone to know this. I want everyone who holds either conscious or subconscious stereotypes about disabilities to take a step back and adapt a new perspective – one of ability, not disability, one of more the same than different.
Thank you to Paul and Jillian (and Ryan) for sharing your inspiring story with us. You are changing the world and I dare say, Ryan, you are truly famous in my eyes!
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