#12DaysofRareChristmas
On the 6th day of #RareChristmas Phoebe would like you to know...living rare can be lonely. It becomes very easy to feel like you see doctors and nurses more than you see your own family and friends. When you make plans to see your family and friends you need to be sure no one is sick or has been around anyone who is sick, because if they are or have been, it's better to reschedule to not risk becoming sick yourself. And if you do get to spend time with your family and friends, you meticulously plan for every scenario that could happen and hope that your energy can hold up so you can enjoy the quality time together and not have to leave early because you start to feel unwell. But a good amount of the time, you end up having to leave early, wishing you could stay and hoping they understand.
#12DaysofRareChristmas
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AuthorThe 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. Archives
June 2021
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