#12DaysofRareChristmas
On the 11th day of #RareChristmas Phoebe wants you to know....that there are not a lot of support groups designated for patients living with rare disease, especially if you are undiagnosed. It's not like other disases and disorders which have support groups for the patient, parents and even siblings. But even if there are not organized support groups for your rare disease, if you look around you you will see you have an amazing support system....your family and friends. They are fighting right along side of you. The people who love you will be the soft place you can fall on your bad days. Giving you strength when you feel weak, encouragement when you feel defeated and comfort when you need to fall apart. The people you love will also be there to help you enjoy every moment of your good days. Making cherished memories by celebrating every milestone, participating in holiday traditions, getting to go on day trips to your favorite places, and enjoying time together on play dates filled with laughter. Phoebe and our family have been so blessed by the love and support of our family and friends. Living in world where she feels so different a lot of the time, it is because of them she feels a sense of normalcy and fitting in. For that, we will be forever grateful.
#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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