Monday, February 28, 2011

Rare Disease Day

No, this post is not about Noah. Although we did go for the whole "rare" thing, that part of Noah's story is over. Hopefully we are done with the scary medical stuff for good. (Yes, I realize at the speed he lives life there are probably some ER visits in my future, but you know what I mean...) And although it has had a huge impact on my life, it is no longer a major part of my day to day life.
That is not how the story goes for children with rare diseases and their families. There is no end to that part of the story, only the beginning of a "new normal." Every day is greatly affected.

This is very important to me because some dear friends of ours are living just that. Their sweet daughter Calla has a chromosomal disorder called Ring 9. You want to talk about rare--there are only about 120 documented cases. Ever. This means a lot of that dreadful "wait and see" game. There are all kinds of physical and metal challenges see could face. Calla is also legally blind; she has some peripheral vision but the center of her eyes didn't develop. (If you want to know more, visit her CaringBridge site at She is a sweet little peanut and I love her.

Calla's mommy is a fabulous writer and this is from one of her recent CaringBridge posts:
I feel like my life before Calla’s diagnosis is separated from me as though through frosted glass. In a way, her diagnosis was a new beginning for me. Everything is thrown out the window and I’m right there with Calla, learning how to live all over again.It’s incredible, really, how one small person can transform your life -- how one single moment can change your life, and the consequences of that change echo louder and louder through all the succeeding moments until all the pieces of your life are shattered by the sound.
As I cycle through my grief over and over again, I’m struggling to figure out how to reinvent myself, how to find a way to transform and adapt. Every day shapes us into who we are by quiet whispers, but the big moments... the big moments stop us in our tracks and force a loud, drastic, painful change. Those are the moments that bring out the truth in us, both good and bad.

I don't have words to follow that except to ask you to think about and pray for Calla and her family today, and remember that many families are affected by rare diseases.
Oh, and click this: (seriously, it will take half a second, you don't have to do anything else, and it donates $ to a worthy cause)

Dear Calla,
Rare can be scary and it can be lonely. But it is also beautiful and special. And that is what you are. You are very loved.
Auntie Ellie

The tag line for Rare Disease Day is: Alone we are rare. Together we are strong. I pray that all those families feel a special stregth today.

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