Today is Rare Disease Day. Ivey falls into this catergory. With her known diagnosis as a deletion to her 21st chromosome, she is a rare little bird. There is no assigned name to her genetic abnormality, no small group of children to connect with, no parents to get advice from, no associations what-so-ever, none of her doctors have seen this before. So please take some time to think about how this rare genetic abnormality affects Ivey, her family and all of us who know her.
Confessions from the mind of this sleep deprived mom navigating the world of complex medical needs, deafblindness, and special education. And y'all, it may not always be pretty, but it's real, and it's always for the love of Ivey.