The Importance of Community for Special Needs Families

When the doctors gave us Rory's diagnosis I didn’t have any idea all that would be gained in the months to come. Last Saturday 9 families gathered with their children to film a video for Down Syndrome Awareness Month. We’ve been connected via The DSND and Instagram for a little over a year now. We have processed our diagnosis, our fears, and joys together.

These strangers came to my rescue. I’m a better person, a richer person because they have been gracious enough to share their stories with me and now they are sharing their stories with you. I was able to be present for all 8 interviews, the entire filming crew was in tears over their bravery.  

Videos like ours are becoming more prevalent on social media. More stories are coming out from the shadows to show the world pregnancies, babies, children, and adults with Down syndrome have a lot to offer their families and the world.  Families are exposing their raw emotions in an effort to support other families and honestly save a child’s life. 

 In the United States, 67 percent of prenatal T21 pregnancies end in abortion. This is an intimate choice that I don’t feel I have the right to judge, but I do have the desire to ensure the choice isn’t made out of fear or misinformation. When you see these videos online I hope you’re left with a better understanding of the value found in our loved one's life. 

 If you’re a medical provider watching I hope you see the pain cold diagnoses can cause. I hope you understand when you urge a family to abort their child you are creating a breeding ground for mistrust between the family and the medical community. Ask yourself, How can a family trust yours to advise on how to care for their child if you didn’t value their life from conception? 

Between tappings, the kids would play and we would stand around chatting about our jobs and holiday plans. It struck me how normal it all was. How Down Syndrome wasn’t our main topic of conversation. 

Families also had the opportunity to meet local candidate Ben Queen regarding areas they felt our state could be better to support our children. It was really such an amazing day. I can’t wait to share the video with you in the coming weeks!

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