December 11th, 2008
About Life
When I started downsyn.com, I had no idea how much it would grow. When Mikey was born I knew very little about Down syndrome. I created the site as a way to document the research I was doing on Down syndrome. After I created the site, I received many emails thanking me for providing information about Down syndrome. I realized that there were lots of parents like me who were encountering Down syndrome for the first time, either with the prenatal diagnosis or with the birth of their child. That’s what led to the forum.
When I created the forum, I expected that it would be me and a couple of other people trying to answer each others questions. I never expected that it would grow to the size it has with so many people across the United States and around the world. As Mikey has grown older and with his dual diagnosis of both Down syndrome and autism, I have found that I have less in common with the people who visit our site but that’s OK. The members of the site take care of each other and help each other and support each other. When a new member shows up worried and frightened, the members of our site quickly answer their questions even if the answer is as simple as, “I have been there and I understand.”
The underlying theme of downsyn.com has always been that the lives of people with Down syndrome is worth living and worth protecting. I am pro-choice but I have always believed that choice is about making intelligent and informed choices. Aborting because your baby has Down syndrome is always the wrong choice because the lives of people with Down syndrome can be wonderful when they are raised by loving parents who understand the special needs of their child. I guess this is why what happened back in September hurt so much.
What happened? Certain members of the site became angry with me because I expressed my pro-choice beliefs. These people said that I couldn’t possibly be a Christian because I supported Obama and Obama supports choice. (Although, by their definition of what a Christian is, I would prefer not to be one.) These people left the site to start their own “pro-life” site because they couldn’t see what downsyn.com is about. I have no problem with someone wishing to start their own site, but to leave the site that brought these people together, to leave the site that showed them how to be a better parent to their child, to leave the site that comforted them in their time of difficulty, and to leave our site and then to try to convince other members to leave breaks my heart. It is as if a friend stabbed me in the back.
But these people fail the most basic understanding of what downsyn.com is about. Children with Down syndrome are saved by this site. Parents who are looking for information and are thinking about making that choice are not going to “pro-life” sites. They are looking for honest and complete information from non-biased sites. They are looking for information, not “abortion is wrong and you aren’t a Christian if you have one”. But that is what they get from “pro-life” sites. This means that the people on “pro-life” sites are talking to each other. The people who go to those sites have already made their choice.
I have never kicked anyone off my site for being “pro-life” and I never will. For children with Down syndrome, I am pro-life throughout their lives. I think our site (and by “our”, I mean all the parents who share their children on downsyn.com) have proven that people with Down syndrome truly have lives worth living and even more, they make our lives better.
Elbog wrote,
Well said, Tom.
Compassion and Grace take many forms. It hurts when it is not reciprocated. I am sorry, too.
Thank you for your continued compassion and friendship.
Link | December 12th, 2008 at 10:59 am
Solveig wrote,
Amen.
There are literally thousands who have become members of downsyn, and the greatest thing about the site is that it has an enormous diversity within it’s members. We are of different religions, different nationalities, different sex. We are single parents, parents who are in relationships or married – both gay and hetero.
Downsyn’s ultimate strength is this diversity; it is a sentiment to the world that babies with DS enrich the lives of any kind of parent. And every one of these parents will support a scared and worried newbie coming to the site without telling them whether or not they are considering them a good or bad Christian.
I send my thanks, too, to you Tom. And to Michel. I’ve been on downsyn for more than 8 years. I am sure that most of the members of the pro life boards are convinced that I am going to burn for what I believe in – so I’m right there with you. As are the remainder of members on Downsyn, I am sure.
Link | December 13th, 2008 at 8:57 am
Leah wrote,
I’m pretty sure the hurt goes both ways, and that things were said on both sides that shouldn’t have been. I’ve learned a lot since then, things that shock me really. Nobody has said the banning had anything to do with pro-choice/pro-life disagreements. To my understanding, the other site wasn’t created to ‘take the place of’ Downsyn, but to give those who WANT to discuss the pro-life issues a place to do that without being told they can’t. I know a lot of people who post in both places, and there’s nothing wrong with that. Just as people were told to discuss politics elsewhere (as well they should be) the other site is a place where people can discuss pro-life DS related issues. What I do think is wrong is that people somehow feel disloyal for posting if they post on both sites. Nobody should feel disloyal for doing so. Some people have gone there because people they internet company they enjoyed disappeared, and they went looking for them. Is there something wrong with that? I don’t think so. How many people stop posting on Downsyn because they’ve moved onto other sites like Unomas, or T21, or NADS, and we don’t even realize aren’t posting anymore? Different people have different needs in their journey, and the other site is fulfilling the needs that can’t be met on Downsyn, because Downsyn isn’t a place to discuss those issues. Good for them for creating a site to meet their needs. Just like you did all those years ago. As for me, back in September/October, and the political messes that happened on Downsyn, I was shocked by things I saw come spewing out of people’s keyboards. There isn’t one person who participated in those discussions that I wasn’t shocked by. NOT ONE! It took awhile for someone to finally say, “This doesn’t belong here.” Something that should have happened long before. There were people lost during those discussions too. I’m still learning about things that happened back in the fall, and am still finding myself shaking my head, and in some ways feeling the need to choose. There was dishonesty, deceit, and hurtful things said. I’ve just recently learned there are people who get put into leadership positions who haven’t changed at all in 2 years, and yet they’re allowed to stay in those positions. That things that are private really aren’t. That my blog post I wrote weeks ago about privacy….still sitting in my drafts folder…echos in my head every time I do something I *think* is private, but maybe really isn’t. But at the same time, the family that is Downsyn is MY family. I am not loyal to a SITE, I am loyal to my FAMILY, and that’s just where they happen to be. I don’t feel disloyal if I post on a site such as Unomas, T21, or NADS, and I won’t feel disloyal if I chose to post on this other new site either.
Link | December 14th, 2008 at 10:25 am
Tom wrote,
I think you completely missed the point of my post. Perhaps if you reread it?
And I should add that no one was told that they could not discuss pro-life issues. The issue was referring to people who disagreed with them as “baby killers”.
Link | December 14th, 2008 at 4:07 pm
Alyssa wrote,
“They are looking for honest and complete information from non-biased sites.”
I totally agree with you on that. With downsyn there is someone who has “been there done that” and that is a great thing about it.
I’m sorry you got your feeling hurt Tom…but keep your chin up… Jesus loves you too!
Link | December 14th, 2008 at 6:03 pm
Leah wrote,
Well, my response was probably to the situation as a whole, and not specifically this post. Sorry about that. Sorry about that. It’s been on my mind for a couple of weeks and I guess it all just spewed out. I’d understand if you didn’t want it here and deleted it.
Link | December 14th, 2008 at 6:56 pm
Tom wrote,
Let me add that I have no problem with people posting on other sites. I have no problem with people starting their own sites. There were very specific things that hurt me and Michel and I tried to explain them.
Link | December 14th, 2008 at 7:08 pm
Karyn wrote,
Tom, I just want to let you know that from my perspective you are totally right about how some parents with a prenatal diagnosis would not frequent a pro-life site. I know that would have been the way it would have been for me when I had a prenatal diagnosis with Quinn. I searched and searched on the internet and luckily I found downsyn. Your site gave me a diverse view. Your site helped connect me to awesome support right here in my own area. I totally get what you are saying. I am glad that everyone was passionate about children with DS, but I think we also need to all be passionate about being nice and not hateful to one another. Thank you so much for all you do with downsyn.
Link | December 15th, 2008 at 2:02 pm