One of the Tough Things ...

Scrolling through Facebook today reminded me of the same thing an e-mail did yesterday ... I can tear up for people whom I've never met simply because our children share the same diagnosis. The pain they feel, whether it's 9 years after losing their child, I feel. The emotions that go into whether to have another child, I feel as well.

Since there's so few of these CDG-PIGN kiddos, it's both easy and hard to carry a piece of each of them in my heart. It's easy because I can tell you the names and states or countries of most of the children in our group from memory, although I admit that's gotten more tough as we've added so many more families (comparatively) in the past year. But when you add one family a year, you get to know them. It's hard, though, because I feel a sliver of the pain they feel with their losses ... whether it's the things their child will never experience, the fear in hospitalizations and seizures that put life on hold, the turmoil of whether and how to have more children who may also be affected or the ultimate loss in the death of a child. And I know I feel just a sliver of their pain, not the entirety, but it's so real because it could just as easily be us. It could just as easily be Teddy.

It's been a tough week for some of our CDG families. I've cried two days in a row for families I've never met (although one I desperately hope to because of the friendship already built on shared experiences, hopes and fears).

I know we're not alone in this. Our CDG family is small, but it's the same for families touched by cancer or any other horrible childhood illness that robs children of their innocence and/or lives. It's joining a community that's incredibly tough in the face of challenges, so strong in advocating for their children, overwhelmingly supportive in times of need and understanding without explanations needed ... yet a part of you wishes you didn't need that community.

But we do because that's our life. I'm so grateful for our group of CDG-PIGN families. I'll shed my tears for them and snuggle my child a little longer because I can.