On the 9th day of #RareChristmas Phoebe wants you to know...living rare means never losing your voice. When you are living with rare disease or caring for someone who has rare disease, you will find you have to explain yourself.....a lot. You have to explain to the doctors what daily life looks like for you/them. You find yourself fighting to keep from yelling because symptoms, patterns, behaviors, emotional breaks are all too often dismissed or overlooked. You are constantly having to bring things to their attention, trying to make them take your concerns seriously, praying if they finally hear you something can be done to help. It can easily feel like you are losing your voice. But remember, at the end of the day it is you, not the doctors, who is living, eating, breathing, sleeping rare...24/7/365. It is you who knows what is your/their normal and what is not. Never lose your voice. Speak up. Be heard. #Roar! #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.