Thursday, April 4, 2013

Separating Caroline from Rett Syndrome

Wishing for a cure.

It's hard to believe how conflicted I was about it for so long.

I think I so desperately needed to accept Rett Syndrome (and get on with our lives) that whenever I found myself wishing Caroline didn't have this disorder, in my mind, I felt like I was somehow rejecting her. I had such difficulty reconciling that Caroline had an identity outside Rett Syndrome. After all, Rett was here to stay. Nothing would ever change that.

Signing up for the Half Marathon to raise funds for Rett research forced me to confront those feelings. It forced me to think about who Caroline really is. She is sweet, she is smart, she is sparkly, she is feisty, she is demanding, and she is loving. Caroline is not defined by her disorder. Caroline is who she is despite Rett Syndrome. The most painful for me was finally accepting that Caroline's condition gets in the way of her ability to reach her fullest potential. It's so hard to admit that out loud. Writing that very sentence makes me feel like someone just punched me in the stomach.

I hope that researchers soon find ways to treat this disorder. I can now say that without fearing that my feelings imply I'm somehow rejecting Caroline. I simply wish for her to have a life without such profound challenges and struggles. She deserves better than this.

Tuesday, April 2, 2013

Caroline is spreading awareness with Cure Rett

We're proud to share that Caroline is part of the Cure Rett awareness campaign!