On the 1st day of Rare Christmas Phoebe wants you to know...living rare on holidays can look a lot different then they do for others. While Christmas is a holiday that is meant to be full of excitement and energy for kids, for Phoebe her excitement drains her energy very quickly. Leaving her weak and tired shortly after reaching the tree to see what Santa has left for her. Instead of ripping through wrapping paper, Phoebe has to take frequent breaks due to shortness of breath and muscle fatigue. By the time she is opening her last present she is laying on the floor exhausted, wanting to curl up under her blanket for a nap. Because shortness of breath and muscle fatigue are two of the ever present symptoms Phoebe has, we have learned to work around them, making sure Phoebe is a part of as many special memories as possible. One way we do this on Christmas is by taking our matching pj photo first thing in the morning before a single present is touched. Christmas memories are priceless. And though we may get them differently than family's not living rare, we wouldn't trade ours for anything.
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.