This site offers you a chance to share your story with potentially thousands of other new families! This blog is called “DS@DS” which stands for “Dear Self about Down Syndrome.” What I’d like is for family members (parents, siblings, aunts, uncles, etc.) to write down and share what it was like to originally find out about Down syndrome. To make it even more interesting, I’d like all the writing to be in the form of a letter to yourself, starting with “Dear Self,” and followed by a letter from your current self to your past self from those early days when you first found out about Down syndrome. Essentially, this will be the current “you” writing to the former “you!”
For most families, finding out about Down syndrome brings so many emotions and questions that only time can answer. This is your chance to remember those things and respond to them now that you have experienced life with your family member with Down syndrome. You might share about how you were worried about so many things but that things turned out differently than you expected. Or you might share about how you didn’t know something was going to happen but then it did as a pleasant surprise! Be creative! The letter does not have to be of any specific length but keeping it under a page will keep it more readable on an internet blog.
The submissions should be sent to firstname.lastname@example.org. There is no guarantee that every submission will be posted. There is no deadline – new posts can be added continuously. The more stories I can share the better, so feel free to share this idea with your family and friends. Multiple submissions from within the same family are also encouraged – Moms and Dads often have different experiences! I cannot be responsible for any editing so please check it over for any grammatical or content issues before submitting. I’d love that the submission be sent along with one picture of you, your child, and/or your family that I could post it along with your story. Please fill out and e-mail this consent form (https://drive.google.com/file/d/0Bzvq0P4QqKXXWjBnNEExWjVLR2M/view?usp=sharing) so that the picture and story can be posted on this blog site.
My hope is that new and expectant families will be able to access this blog and learn from you about what having a child with Down syndrome is really like. There is a lot of misinformation in the medical community and on the internet so families need to have a place to have real information from real families! Please consider being a part of impacting so many lives with your story!
Kishore Vellody, M.D.
P.S. By the way, this blog is completely a personal endeavor. It is not directly associated or managed by the Children’s Hospital of Pittsburgh of UPMC or the Down Syndrome Center of Western PA.