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@www.wikipedia.jpg: Hello #moms #teenagegirls #LanguageLearning #girlblog #asf
ℒucky 𝒱icky
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Sunday 01 November 2026 01:46:27 GMT
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Adaptability. It’s one of the biggest learning curves as a parent of a child with EB, and also the biggest blessing. Initially when we found out about Mackenzie’s EB, we learned about how her body would be covered in wounds. We learned she’d need dressings covering nearly her whole body. We quickly found out that she needed those dressings to stay on always- without them blisters and skin tears inevitably tore apart her skin. I remember the grief of thinking that she’d never be able to have “normal” childhood experiences, that she wouldn’t be able to play with her sisters in the backyard, explore the water, go swimming. But with the months of parenting this beautiful girl who has EB comes months of learned adaptability. I’m constantly shifting what our “normal” looks like. And this weekend we adapted what outside play got to look like for Mackenzie. Yes this is more challenging with her EB. We had to do a dressing change twice yesterday to allow her to play in the water. But her joy was so worth it, and we learned that just because it’s different doesn’t mean it’s impossible. #parenting #medicallycomplex #raredisease #poolday #mindsetshift
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