/ first grade \

First day of first grade.

My oldest daughter, Anona. She is funny, sensitive, creative, friendly, and imaginative. She is easily frustrated, but also easily encouraged. Her hobbies include drawing, karate, swimming, and hiking with her mama. Today she started first grade. She approached this year with far more confidence than last year. I am proud of who she is ♥️

Lately, Anona has been complaining of her ankles rolling. She complains of occasional joint pain. She is super hyper mobile, is 9/9 on the Beighton Scale (I know kids tend to be more flexible, but she is far beyond her peers), and has had other symptoms/traits that are highly suspicious for EDS. We haven’t gotten her diagnosed yet. I’m not in any particular rush to- but I am nervous to see more symptoms unravel.

She’s my kid. I want to protect her. I don’t want to see her in pain. It breaks my heart to think she might have to go through some version of what I’m going through. We are just going to have to wait and see what happens.

For now, I’m gonna just let her be a kid enjoying her first day of first grade 💫




#ehlersdanlossyndrome #EDS #zebrastrong #POTS #MCAS #mastcellactivationsyndrome #craniocervicalinstability #CCI #dysautonomia #hashimotos #chronicillness #spoonies #alopecia #alopeciauniversalis #thespooniesisterhood #kidsandchronicillness #chronicpainwarrior #chronicillnesswarrior #chronicfatiguesyndrome #CFS #ME #chiarimalformation #butyoudontlooksick #invisibleillness #chronicpainawareness #chronicpain

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