Down Syndrome Diagnosis Network

Before my daughter was born I was worried. None of my closest friends had children and, with most of my friends, our usual communing was done between 7 pm and the wee hours of the morning. I knew things were about to change, and I wondered who I would find to relate to. This feeling was amplified when I realized that she had Down syndrome. Now, I thought, I could no longer relate even to the parents I did know. Of course this has since proven not to be the case. While there are certain things that parents of typical children won't fully understand, so far and for the most part, the daily ins and outs of parenting her are not a lot different than parenting a child without Down syndrome. There are those differences though, and for those I knew I needed to find someone to talk to. I needed someone to express my concerns to, to ask questions, and to generally commiserate with on all I had been through. It needed to be someone who I knew would fully understand. It had to be someone who had gone through the same thing.

Immediately after, and for a couple of months following L's birth, I was not brave enough or ready to reach out to anyone in the Down syndrome community in my area, though I knew I needed to relate to someone. As luck would have it, I had downloaded a pregnancy app months before that I knew had a community of pregnant women and mothers who used the app to talk daily with one another. Lying in bed one morning, I searched the app to see if there was a specific group of moms of children with Down syndrome. There was, and while looking around on it I saw a thread about a Facebook group I could join. This group would put me in a community of women who also had babies with Down syndrome that were all born around the same time as my daughter.


The group, founded by the Down Syndrome Diagnosis Network, was exactly what I needed. To find women who were at the same point in navigating their way through this new life of Down syndrome, give or take a few months, has been such a blessing. Anytime I have a question, whether it be related to L's health, or my own feelings in dealing with the diagnosis, or something as simple as toy recommendations, I know there is someone who can help. There is someone who has gone through the same thing, and has an answer. There are people to share her pictures with who I know truly see her for her, and know how beautiful she is. There are people to celebrate her achievements with who know how hard we worked for them. There is someone to offer support and someone to offer my support to, and supporting each other is so important, especially in the moments directly following a diagnosis.

The Down Syndrome Diagnosis Network gave me a place to grow. I believe that joining their community has been instrumental in helping me become more comfortable with L's diagnosis. It was a tremendous help in getting me through the rough patch that was the first couple of months after she was born. It, along with getting to know my daughter and time in general, has helped to give me the courage to reach out to the Down syndrome community around me. It has been an integral link in the process of transitioning from strictly online friendships to real life friendships as well, and it has benefited me with friendships across the globe that I would have never found otherwise.

The Down Syndrome Diagnosis Network offers more than Facebook groups. To find out more about them click here, or follow the links on my Down Syndrome Resources page.