I recently read an article where a mother whose baby had just been diagnosed with Down syndrome describes the experience as falling into a black hole. She perceived a bleak future with her son; one in which they were both social outcasts. This mother explained how her Internet research made her feel more defeated by outlining a long list of things her baby probably wouldn't be able to do.
These types of stories make me wish that I could stand on rooftop of my home and beckon everyone in the whole world to come meet my sister and my daughter. If everyone had a chance to truly experience Down syndrome like I have, a Down syndrome diagnosis would be met with hope; the same type of hope for the future that awaits any other baby that is welcomed into the world.
As I find my way along the journey of parenthood, I am constantly reminded that there are more parallels in parenting children with and without special needs. The experiences are not identical - but no two parenting experiences are, regardless of a child's needs. I have been parenting for six years now and I still don't know what I'm doing. I don't know what any of my children will become. But I have immense hope for their futures. I believe each one of them has incredible potential.
All too often, society measures a successful individual by how many advanced degrees he earns and how much money he makes. With that standard of measurement, it's easy to see why individuals with Down syndrome are not valued. It's very clear why the diagnosis is perceived as negative. However, there is more than one path to a successful and fulfilling life. Growing up with a sibling with Down syndrome helped me to see that developing our own gifts and using those gifts to help others, striving to attain our highest potential and leaving this world a better place because we were here, and enriching someone else's life because you were in it - that is a meaningful life. If you use that standard of measurement, the value of my sister's life is inexplicably profound. The sacrosanct virtue of her life is the foundation upon which my worldview was built.
Because of the impact that my sister had on Travis and I, we welcomed a baby with Down syndrome with immense hope. We knew that she was filled with potential and that the world would be better because she was here. And just like with our other children, we are invested in helping Josie achieve her greatest potential so that she can set goals for herself and strive to meet them. Her path will be different. Everyone's path is different. But everyone's path is meaningful.
(Pardon the messy hair)
While I was watching the 2nd video and Josie kept straightening the letters, I thought how patient you were because if that was Beth I would have told her, "Beth, that's fine. They're good." And then you said... :)ReplyDelete
Thanks so much for the child activities! Lots of pretty ideas and inspiration!ReplyDelete