Connecting

When Emelyn’s developmental delays were first becoming evident, I grew to hate social media. Seeing pictures and videos of other babies taking their first steps, drinking from a cup, and saying their first words was painful. It’s not that I wasn’t happy for those other families, because I was, but I was sad to see the growing divide between Emelyn and her peers. But like any grieving process, you do eventually get to acceptance and your mind stops the unhealthy practices of comparing and feeling sorry for yourself. It was then that I gradually returned to social media to find support.

When Emelyn was around one I connected with a local group of parents with special needs children on Facebook. While our children have different diagnoses, as well as varying abilities and challenges, we are all navigating the special needs world. The value of connecting with people who get what you’re going though is priceless. When I see a mom post a video of her son or daughter taking his or her first steps at five years old, I not only celebrate with her, but it gives me hope for Emelyn. And while I’ve come to love our online connection, I’m grateful to be able to see these other moms on a regular basis in-person. There is something extra special about our personal connections.

Now, nearly two years later, I’m once again connecting on social media. Within an hour of Emelyn’s diagnosis, I was on Twitter connecting first with another dad whose daughter had just been diagnosed with DDX3X, and then with a private Facebook group of a handful of parent’s with affected daughters. It’s a small group, of less than 100 members representing about 20 or so of our girls. While we’re spread all over the world, I’m hopeful I’ll get a chance to one day meet these moms and dads in-person. There’s something to be said for networking the old fashion way.

So, while social media once brought sadness, it now brings connections and hope. I’ve now read several parents’ descriptions of their daughters and they sound so much like Emelyn, “happiest person I’ve ever met,” “bright red hair,” “loves water,” and more. While you won’t find these things in a study, I’m finding our daughters are bringing a very special love and happiness to each of our families.