I don't know how to do this...

I've never done a blog before, so bear with me. I'll get the hang of this eventually and I'm guessing it will turn out to be pretty entertaining.

My mom has been bugging me to do something like this for a while. Write a book, keep a journal, or write in a blog about my daughter, Penelope. I guess the blog thing seems most appropriate for all intents and purposes. The reason my mom wants me to keep some sort of record of Penelope ( PP is the nickname of choice on the interwebz ) is because she is a child with Special Needs. My PP has Weaver's Syndrome.

First things first, PP is a very social and lovable girl. Don't feel bad for any of us, including Papa Chris, because we live a very happy and active life in spite of the troubles we come across. We have a fantastic, supportive network of friends, family and teachers who help us every step of the way. Our little family in itself is very strong and the three of us have a bond that is outta this world! The reason I feel compelled to tell more people about Penelope is because she happens to be one of the most interesting and inspiring people I have ever met. I have learned more from her than I have ever learned from anyone, and she still manages to teach me something new every day. I actually used the word 'phenotypic' in a real sentence while talking to a doctor today...WHAA?! It's nice that she is such a good teacher, because there is very limited information about this crazy thing called Weaver's Syndrome.

Here is a website that sums it up pretty nicely: http://www.healthline.com/galecontent/weaver-syndrome

Not very much information is available to read on Weaver's Syndrome because it's relatively new in the medical world. It hasn't been around for long enough to have a lot of longitudinal studies completed so most of what I know only covers up to around ages 5-10. I guess the most interesting part to me is the fact that although it is a genetic disorder, the gene is not inherited and there is no definite gene marker than can be tested for Weaver's. It doesn't really make sense, but the further I go into parenthood I find that's the case with a lot of situations in life. Being a malleable parent is a valuable thing.

I am part of a group on the interwebz created by parents of children with Weaver's; I find that the information on the posting board there is more useful to my daily life than the little blurbs I can find on Google if I have an hour to waste (which I don't). We also attend a class in an elementary school every week for children with Special Needs so PP can interact with other children and I get to talk with parents who are going through experiences similar to ours. This blog is another avenue of communication I have decided to open up, just to see what happens I guess. I would also like other people to learn something from my PP, because she is more than a Special Needs child, she's a Weaver. And she's cool.