When you're a new mom, finding a community of moms like you or moms who have been through all of the normal baby stages can be a real lifeline.

But how do you find others like you when your infant has SOMETHING but neither you or all of the specialists in the world (or so it seems to this blog reader) can't determine what it is he has?

3MGA Mom would like to find people like her...

I like other people like me. Motherhood has been a lot easier since I met some like-minded moms. However, a big problem with this diagnosis process and suspect test results is that it leaves us wholly without a community. The listservs of parents of children with mitochondrial disease are full of people discussing when to get their children declared disabled, how to best go about tissue biopsies, and feeding tube infections. Some of their babies never sat, never crawled. Their prognoses are known, but not necessarily good. They have a name for what is going on, they have a community, but they have it because of shared misfortune.

And we don't belong there...

Ignorance is bliss, I guess. And I'm sure parents with seriously ill kids would read this and feel like I'm equally an ass, and in a way I am. But I figure with all of this newborn screening program expansion, there have to be more people like us, perpetually in limbo, regularly terrified, feeling very alone. They are my community, if I can just find them.

Cole sounds like a pretty terrific little boy and his mom is an amazing advocate for him. Are there any mommies out there who have been through the metabolic disorder diagnosis? Are there any mothers out there who understand what it is like to be in 3MGA Mom's shoes? I don't have this type of experience but I would give just about anything to help her find the answers she's looking for ... and help her find her community.

~~Denise
Daily Dose of Denise