It Truly is the World Wide Web

If you read the About Me section of this blog, you'll see that I wrote:

We decided one thing we could do was start a blog to create a bit more awareness and give other families with this disorder the opportunity to connect. 

We started this blog within a few months of getting Teddy's diagnosis. There was so little information available, and so much of it was so dismal and didn't match our experience with Teddy. We wanted to put more information, including more positive (yet realistic) information out there, for others searching for this diagnosis. We also wanted to provide a way for other families to connect, particularly before we found our amazing Facebook group of families.

In those early days, there were perhaps 5 other families in our Facebook group. It was a big deal when every six months or so another family got added. In the past two weeks, though, we've added 3 more families with CDG-PIGN to our Facebook group. That absolutely blows my mind that we're growing so much and that families are getting connected to this amazing resource sometimes even the same day they get the earth-shattering diagnosis.

The thing that's made my day, twice this year, is that I've had two different mothers reach out to me after reading this blog. One doesn't use social media, so she wouldn't find our Facebook group. The other came across the blog while searching the Internet and reached out, so I could connect her to the Facebook group. That particular mom is from Germany. This blog is reaching out around the world to connect others, to give them hope and to bring them into our group of CDG-PIGN families where they have all of us to use as a resource.

When that mom told me that she spent much of her day reading my blog, it just made me smile. Everything on here isn't all sunshine and roses because life isn't always easy (for anyone, regardless of diagnosis or not). But it's realistic, and there's so much positive in our life with Teddy. I'm grateful that even these two families have been impacted by this blog.

And with World CDG Awareness Day coming up May 16, I'm hoping to do another round-up that will include as many of our CDG-PIGN kiddos as possible. Those seem to be the posts that spread like wildfire and reach the farthest. That, and our kids are adorable and amazing, so the world needs to see them.