On the 2nd day of Rare Christmas Phoebe wants you to know...living rare can affect your job. For 8 years I have been the one to navigate this journey with Phoebe. Every doctor, hospital, emergency room, test, treatment, lab draw etc, I have been by her side. Taking her all over the country, fighting for answers, seeking out specialists and researchers hoping they could help us. But for first 6 1/2 years I was a stay at home mom and student. Studying to become a registered nurse while being a nurse/advocate for Phoebe. Now that I am a nurse, working full time, I am still responsible for all of those. Only now I am faced with the constant decision of when to leave Phoebe to go to work and when not to. Is she stable enough that I do not need to be at home, or is she unstable enough that I need to stay with her, always ready. Then there are the times I have to leave work early because Phoebe has gotten so bad so quickly that she needs to be rushed to the hospital. No matter the situation, I know the effect it can have on my job. All I can do is pray that they understand.
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.