#12DaysofRareChristmas
*photo from our November trip to Kozair's Christmas Village..each of our girls put in money and rang the bell
On the 9th day of Rare Christmas Phoebe wants you to know…living rare scares you. It is not just the lack of a diagnosis or the lack of treatments that scare you. It’s seeing how bad things can get and not knowing if that’s the worst of it or if it could get much much worse. It’s not being able to explain to your child why they are going through what they are. It’s feeling like you aren’t doing enough...fighting enough...to get your child the services they need. It’s having to trust other people to provide care for your child (doctors, hospitals) when they have never cared for a rare undiagnosed patient. It’s feeling unheard when you need to keep explaining your child’s medical history, symptoms and risks. It’s wondering if the letters from the doctors will be followed or brushed off. It’s feeling like your fears and concerns are being dismissed by others. It’s seeing your child pushing themselves beyond their limit because they want to be like the other kids. It’s trying to give your child as normal of a life as possible while keeping them as safe and healthy as possible. It’s everything you know and everything you don’t know that scares you.
#12DaysofRareChristmas *photo from our November trip to Kozair's Christmas Village..each of our girls put in money and rang the bell
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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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