On Monday, a friend of mine recently shared something of his experience of raising a child with Down Syndrome. I found his reflections moving and wanted to share them with you.
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As is probably true for most of us, he knew little of the reality of living with Down Syndrome. So when the doctor explained that there was a chance his unborn child would have the Down Syndrome, neither he nor his wife knew what lay ahead.
However whatever fears and uncertainty this couple had, they were confident of "God's good control over everything." That included the precious little life which she was carrying at that moment.
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Of course, when we talk about 'unborn children' and 'Down Syndrome,' we need to be careful not to lose sight of the fact that we are talking about a person. This is an individual with their own personality. A person who loves, and is loved by others. Who has interests and passions, joys and struggles which are all unique to them.
In this case that person is an almost 11-year-old girl named Jade. Her father reflects on her life so far he can see that: "Down Syndrome has made things harder for Jade, but her enthusiasm and perseverance is a challenge to everyone. She has had to work hard to reach every milestone. Many might not realise that. It has been hard and many tears have flown along the way. Head control, sitting, walking, swallowing, talking all took massive effort for her, yet she persevered. I am deeply thankful for Jade's zest for life, determination and perseverance."
I have not personally known too many people with Down Syndrome. Had my wife and I received the same diagnosis with any of our kids we would have been every bit as ignorant about how that might shape our lives. I would probably have fear about my ability to cope, or how they would navigate the world around them.
Yet I wonder if that says more about me than it does about those with Down Syndrome. Do my imagined fears come from my imposing my own ideas of what makes my own life worthwhile on others?
After all, my life has its own hardships and struggles in it. I have limitations which mean that I can't do everything well. But I don't think that my life is not worth living because of those things. I love life! Even in the hard times, I love that people get alongside me and care for me. I love the feeling of overcoming obstacles. I am even thankful that those hard times help me to learn and to grow. In so many ways, my life is richer for the challenges I face.
Why would I not imagine that the same is true for Jade? Or for anyone else living with the effects of disability, age or even illness? Who am I to impose my own fears about life upon others?
Indeed, for Jade and her family, whatever fears and uncertainty they may have had, have been dwarfed by the joy which Jade exudes in herself, and which she brings into their lives. If ever there was an example of just how rich and meaningful even a single life which God has made can be, it is Jade's. And so it seems fitting to give the final word to Jade's adoring dad.
"Down Syndrome may be seen as an inconvenience in this world (and if that is true, what a sad place our world has come to)... but my daughter Jade is far from that.
"She is a joy and I believe she teaches the world what is of real value. Real value comes in joy that cannot be quenched.... And that comes through Jesus. I am so thankful that my daughter has joy in what matters."
David Robinson is the Anglican Minister in Glen Innes
