Tell me what it is you want to do with your one wild and precious life? -mary oliver

Thursday, October 7, 2010

Sarah first, then Ds

     Throughout my learning journey over the past few months, I've read and processed so much information on adoption, Down syndrome, and Special Needs children.  I continue to learn daily from those who have walked this path before me and look to them for guidance, advice, and a listening ear when I need it.  For our family and friends who have little experience with a child with special needs, I want to share with you some insights I've learned on this journey.

    Sarah is a little girl with chestnut hair and chocolate eyes.  She has Down syndrome, and most likely was placed in an orphanage in Eastern Europe because of her diagnosis.  In her country, there are no therapies, there are no schools for children with special needs, there is no life.  Parents are given their child's diagnosis at birth and the recommendation to place them in an orphanage.  At 4 or 5, these children are moved to mental institutions, where life expectancy after transfer is 2 years.   They do not see potential in children with Down syndrome.

  Down syndrome is not Sarah, nor is Sarah, Down syndrome.  She is not a Downs baby, nor has Downs.  (It does not have an s on it.  It was named after Dr. Down, who discovered Ds, not someone who had it.)  She is Sarah with Down syndrome.  By saying Sarah with Down syndrome, it shows respect to Sarah and that you see Sarah for Sarah, and not  Down syndrome.  Until Sarah was born in our hearts, I was not aware that my words mattered.  It may seem like semantics, but Sarah and other individuals with Ds (Down syndrome) need to be seen for who they are, and not the Down syndrome piece first.  Sarah is beautiful, Sarah is lovely, Sarah is a life to be cherished, and Ds is a part of her beautiful puzzle.   Her potential is bursting to get out, to be given opportunities, to have a life outside the plain walls.   Sarah is a life worth saving, a life worth living, and a life worth the love of her forever family.  So, when talking about children with Down syndrome, remember their name first, then  Down syndrome.

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