Dancing in the Rain
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A Trisomy 18 Journey

Life is not about waiting for the storm to pass. It's about learning to dance in the rain. -- Vivian Greene

Tuesday, October 23, 2012

Day 20: Charity/Organization

 Day 19: Charity/Organization

Photo of the Balloon Release in Honor/Memory of  children with a rare trisomy
SOFT Conference, 2012, St. Louis, MO
Through our journey with Julia, we found support in many places.  Because the community of families of living children with Trisomy 18/13 is small, finding your way into the community can be difficult. After Julia was diagnosed, we first found the Trisomy 18 Foundation's website.  It contains information about Trisomy 18 as well as beautiful Legacy pages for Trisomy 18 angels. We also found the Support Organization for Trisomy (SOFT) website.  This website offered two books on caring for a child with Trisomy 18 or 13. We ordered those books a couple of weeks after Julia was born. SOFT holds an annual conference to bring together families of living and angel trisomy children. Although we have not yet been able to attend, it is something we would love to do in the future.  After spending the first few months of Julia's life in isolation from the Trisomy community, finding them was a God-send. There are several Facebook communities that have been profoundly helpful to us as well. If you are the parent of a child with Trisomy 18 or 13 looking for support, please try one of these organizations or facebook groups.

Facebook Groups: 


October is Pregnancy and Infant Loss Awareness month. This national observance month was established in 1988 by President Reagan.  This post is part of Carly Marie's "Capture Your Grief" 31 day photography project for Pregnancy and Infant Loss Awareness Month.


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