Now that I’m older, I completely and totally relate, girl. Rapunzel finally went stir-crazy and broke out of there with some dude. We watched that movie about a hundred times when it came out. Morgan and I used to pretend that I was like Rapunzel from Tangled, hidden away in my darkened tower (bedroom). So I spend my days indoors, hanging out with my dad (truly the best dad ever) and Morgan (truly the best friend ever). If sunlight so much as glances off my skin, I’ll get skin cancer, and my body can’t repair the damage so my brain starts to fail-which could mean hearing loss, difficulty walking and swallowing, movement problems, loss of intellectual function and capacity for speech, seizures, and, oh yeah, death. I have a rare genetic condition called xeroderma pigmentosum, aka XP, which basically means a severe sensitivity to sunlight. I want so badly for this dream to be real, but that would be impossible because my mom died when I was six years old.Īnd I can’t go out into the sun… like, at all. I feel the warmth of the sun on my skin and the comfort of her arms around me. I hear the waves crashing as my mom’s voice rises and falls. We’re at the beach on an old blanket I still have tucked away in my closet. I have this recurring dream: I’m a little girl, sitting with my mom, and she’s singing to me.
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