The looks people give

This topic contains 1 reply, has 1 voice, and was last updated by  Dawn 7 months, 1 week ago.

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  • #62961 Reply

    Rachel A

    I have a baby daughter with a rare condition that has taken us on a terrifying rollercoaster ride in her young life. As a result, her skin is very red and sensitive and she doesn’t look like other babies. I can’t begin to tell you how often people will look at her and ask what’s wrong. But it’s the way they say it, like she’s a dog that just shit on a rug and not a tiny baby who needs our love. Somehow the hushed tones and fake concern feels just as bad. I try to ignore it, but it really gets to me. I think my biggest worry is what this will do to her. It has me so worked up, what will this treatment do to a little girl? The world is such a cruel place.

  • #63836 Reply


    I’m new to this site and read your post. I want you to know I hear you. My husband has ALS and is in a wheelchair with some breathing equipment. We get stares and such now, and even in places where we know everyone and they see us often (church), I still feel all eyes on me.

    I think anyone who brings up the way your daughter looks has terrible manners at best, and is just unkind at worst. It must be very hard to take care of her without her being able to speak and guide you as to what hurts and what feels better.

    Know that somebody else cares.


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