For so many of us, the day we received a diagnosis for our child with Down syndrome is a day of shock and sorrow. We moved forward from that time, and have grown along with our children. In the book The Time Traveler’s Wife, the main character travels back in time, and at one point tells his doctor that the doctor’s unborn child has Down syndrome. “He’s a wonderful boy,” is the attempt at reassurance from the time traveling friend. Having spoken to so many expectant parents, I can say that this bland generalization is not enough for those facing that raw time of fear of the great unknown. Parents often thirst for so much more.
We talk about “what to expect” so much on our blog and discussion board on Baby Center. NICU stay, prenatal monitoring, medical care, government services – the list goes on. Practical. Informative. Useful. But of course information is simply not enough. We need to mix it up with some personal experience, which we do through our blog comments and discussion board posts. Experienced parents, if you could travel back in time and meet yourself on that day, what would you say? What would your past self need to hear about your child, your life, your family?
Mom and blogger Patti provides a particularly beautiful glimpse into the life of a family which has a child with Down syndrome here.
Darci Howard of BYU tv’s Fresh Take also interviews blogger and author Kelle Hampton, who is also one of our pregnancy book photographers. Expectant parents grappling with intense emotions may identify with Kelle’s account of those first few hours after she learned baby Nella had Down syndrome. But keep watching, and you will hear of the transformation of those feelings, and catch a glimpse of cute baby Nella at the end of the interview.
Interview: http://byutv.org/watch/8303febf-8c13-4a43-a645-99439d54f350 (starting at 17 minutes)
Kelle’s blog: http://www.kellehampton.com/
Kelle’s story of Nella’s birth: http://www.kellehampton.com/2010/01/nella-cordelia-birth-story.html
You can also read stories from other moms and dads around the world who received a prenatal or postnatal diagnosis at Unexpected Stories of a Down Syndrome Diagnosis.Tags: down syndrome, Down syndrome answers, down syndrome pregnancy, downsyndromepregnancy.org