On the 10th day of #RareChristmas Phoebe wants you to know....it is hard to stay positive when you are battling rare disase. We are now in the 5th year of Phoebe's battle as an undiagnosed rare disease patient. She has watched her older two sisters go through elementary school, getting to experience school events, recess, art class, music class, gym, after school activities, field day and more. And just as any little sister does, she has looked forward to one day being old enough to go to their school and do all the things they were getting to do. But Phoebe is not able to do all the things that her sisters were able to do. Perhaps the hardest part for her is that she is aware that her body will not let her do all things she wants to do, that she has watched her sisters and now classmates do. And the longer she goes through this, the more aware of her differences and the fragility of her health she becomes.. It is not easy to stay positive when you are always going to doctors or hospitals and nothing ever changes, you still feel the same way you did when this all first began. #12DaysofRareChristmas.
The true author of this blog is my daughter Phoebe. This is her life. I am blessed beyond words to be her mommy and to be able to share her story with you.