Date: 10/22/2021

Sometimes after Hanna has fought a major illness or had a long battle with a fever, her skin will also go through some major changes. Sometimes her skin even begins to change just before the illness sets in (though her skin goes through changes for multiple reasons, often).

This time, the back of her neck was extremely flaky (more than what you’re used to seeing). It was red, inflamed, super sensitive. Usually Hanna is fine when her skin peels off, but occasionally it hurts, and this time it really hurt.

She also had a headache and a really stubborn, often scary high fever, for close to a week. For those of you that don’t know, fevers are rough around here for her because she cannot sweat properly, making fevers last way longer, often spiking even higher.

Interestingly enough, sometimes her fevers allow her to escape her daily lotion routine (tender mercy 🙌🏻). Because of all the hot moisture (sweat) trapped within her body, it holds moisture on the outside of her body as well, allowing her to go without lotion for once!

Sometimes those changes are a harsh reminder of the reality she lives. Today (and until this heals, which won’t be long thanks to her quick cell turnover), normal things are painful again. The air on her skin (finger & wrist) hurts, and using her hand is a bit awkward right now. (Heads up teachers…)

Understandably so, at times she cries about how much she hates her skin, and I try to find the balance between compassion and positivity. Some days I cry with her or just hug her and tell her, “I know it’s not fair.” Other moments I remind her of how much she’s overcome already, and how brave and strong she is. Sometimes I think about homeschooling her, because if I’m being completely honest, she is struggling, and has been for a while. But then I remember, and remind her, her light is too bright to keep it to ourselves inside our home. Her light was meant to be shared. Her courage. Her strength. Her friendship. Her heart. Her story. And each of you remind me of this often as you have been lifted by her. Thank you for the reminders. ??

While I don’t know exactly what the future holds for her, I know it’s bright and full of more miracles.

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