The upside of waiting I guess, is that it gives me a bit of time. Since I can’t concentrate, I multitask. Simultaneously taking down the Christmas decorations, while doing laundry and eating chocolate chip cookies with white wine. Seems like a perfect time to stop and blog.
A few months back I posted about Meghan‘s necklace. The one that we had had created, just for her, inspired by the Global Genes Project logo of the denim jeans. She received it in August and was so thrilled. She wears it proudly and looks at it as a platform to explain to people what it stands for.
Her goal in having it created was to ultimately have the Global Genes Project sell them as a fund raiser. She has this hope that her idea will ultimately raise money for rare and genetic disorders. I think she is right, and eventually they will get to selling it. Although the holidays are a crazy time and a lot of major things have been going on at the Global Genes Project. They are a super organization. Working to the benefit of all of us who are affected by rare genetic disorders – in our case, Cowden’s Syndrome.
This fall she had my friend’s husband – who created the piece, engrave hers. It says “August 2012 – First of its kind.” How appropriate. I am quite sure my girl is the “first of her kind” as well.
Because, she decided she wanted me to have one too. A necklace like hers.
“After all Mom, you didn’t just have breast cancer. Cowden’s Syndrome is what we will both have – forever.”
She’s right. As I gulp the last of my wine. We are at this forever. Together. And as much as it flat out stinks, I wouldn’t want to share forever with anyone else. She is one awesome little girl. Each of us 1 in 200,000. Lucky enough to have each other.
beatingcowdens 