This post is not intended to offend anyone...I know there are many mom's out there who have kids with DC who read my blog so please don't be offended.
How's that for a fine way to start this post?
Yesterday in the mail, I received our Welcome Packet from Dyskeratosis Congenita Outreach. It was actually so much good information and so kind of them to offer these resources. It included two t-shirts, some brochures, a newsletter, a card with many DC families pictured on the front and hand written message from the organization. There were rubber bracelets and ribbons to wear for Rare Disease Day coming up on the 28th. As a welcome package...it was pretty sweet! But...
It was a welcome packet to the disease that is going to take my kids' life! I'm not going to lie...it struck me as a bit twisted.
Welcome to how it ends!
Welcome to your worst nightmare!
Welcome to the very thing you dreaded for the past 5 years!
Welcome to the biggest headache of your life!
Welcome to your new best friend...a box of Kleenex!
Welcome to the next big thing
Welcome to your insomniac life
Welcome! Enjoy being rare
Welcome to life beyond normal.
I could go on and on but I think you get the picture. It was just weird. I'm not being ungrateful, I'm not, just so disconnected. It was truly, such a nice thing to receive.
Honestly, for being such an exclusive group with such few people, this organization sure has their stuff together. I'm pretty impressed. I can tell that they really care and they are trying so hard to get the word out about this horrible disease...horrible when you are living in reality and not denial! Trust me, those are two separate worlds where we spend an equal amount of time.
It's like denial is our summer home... the place where we run to escape the storms, when we need a break, a little sunshine. The place where we can sit on the beach of Notta Care and bury our feet in the sands of time that run effortlessly through our toes, hardly noticeable. In this world, you forget all your troubles. This is the place where the Cracker Jack band plays and you really are happy landing on a chocolate bar!
Then there is reality! On the corner of Shock and Awe! It's the place where nothing makes sense, and you scratch your head in unbelief. Where stress is alive and well and anxiety thrives. Time does not stand still the land of reality. Nope, you journey back to the past, then jump to the conclusions of the future. You spend very little time in the present and no time in denial.
So, ya...Welcome to the land of 'Now You're Crazy' No one gets out alive so you may as well enjoy the journey!