My previous post discussed two of my takeaways from the 2017 Rockin' Mom Retreat I attended a week ago: the importance of taking time to care for myself and the importance of finding and focusing on the positives. So we spent the weekend bonding and learning more about self-care, but now what?
These ideas are somewhat inwardly focused, but DSDN's mission is anything but! Since its inception on March 21, 2014 (World Down Syndrome Day and exactly one week after Jackson was born!), DSDN's mission has been "to connect, inform and support new families at the time of diagnosis and to impact the diagnosis conversation so that every family receives accurate, up to date information along with the diagnosis."
From one hundred moms who connected after their diagnosis on Baby Center, DSDN has become an organization that has connected over 4000 families worldwide and continues to grow daily. However, the connecting part of the mission is just one small part. During the retreat we also spent time learning about different ways moms can inform and support. I am calling this "Spreading the Good."
And let me tell you, some moms have taken the idea of "spreading the good" and have run with it. Two moms, Becky and Megan, announced the launch of a new organization at the retreat: Down Syndrome and Cancer Coalition. Down Syndrome and Cancer Coalition's purpose is to help support parents whose children have both DS and a cancer diagnosis. These two moms have gone through their children with DS having cancer, they saw a need within this particular population, and they decided to do something about it. You can learn more about this awesome organization at https://www.facebook.com/
When Nancy Gianni, one of our retreat speakers, saw a need for a place for children and teens with DS to go to learn and play, she went on to found the first Gigi's Playhouse. There are now 33 Gigi's Playhouses around the country! Plus, at one of the breakout sessions we could attend on Saturday, moms learned how to bring a Gigi's to their hometowns. What an amazing instance of one mom's mission continuing to inspire other moms to spread the good!
For me, this is where DSDN has really hit its stride. Yes, it has connected over 4000 families, but it's these connections and the opportunities DSDN provides, like the retreat, that continue to inspire and empower moms.
And what do empowered moms do?
Empowered moms start organizations. Empowered moms bring amazing organizations centered around DS and achievement to their communities. Empowered moms write letters to the doctors who delivered their child's diagnosis (see mine here). Empowered moms take up-to-date and correct literature about DS to doctors, genetic counselors, and local DS organizations (You can order these for free here). Empowered moms reach out to families with a new diagnosis. Basically, empowered moms see a need within the DS community and figure out ways to fill it.
I can't speak for other moms, but when Jackson was born and we received his diagnosis, I was pretty much the exact opposite of empowered. I felt, alone, ashamed, and wanted to crawl in a hole and hide. I can't express how horrible it is to feel that way after giving birth to your child. I remember one particular phone conversation I had with a friend who hadn't yet had children; through tears, I told her not to risk having children at our age because it wasn't worth the heartbreak.
Yep, that was where my head was, but thankfully, due to other empowered moms, DSDN was there to help me get connected to other moms. Those moms embraced me, helped me through the initial grief, and then empowered me to work with other new moms. I figure if I could have been in such a dark place and come out on the other side to revel in the beauty of my child's very worthy existence, then maybe other new moms might need to see an example of what the other side can look like.
Sometimes it's easy to think that these smaller actions aren't worthwhile, but at the retreat they showed a very fitting video about a little girl throwing starfish back into the ocean. It was an enactment of the Starfish Story, pictured below.
From personal experience, I can unequivocally say that the moms who reached out to me after Jackson's diagnosis were so important to my journey. They made a difference to me, and I now strive to do the same for others.
To quote Theodore Roosevelt, “Do what you can, with what you have, where you are." After this retreat there is a group of 300 enthusiastic and empowered moms on a mission to change the world for their children. I can't wait to hear about all the ways-big, small, local, international, etc.- that my fellow DSDN warrior moms decide to SPREAD THE GOOD.
See you in Phoenix!
See you in Phoenix!