Leven met EB



Een blik binnen het leven van een EB-patientje en haar omgeving.

Van dagdagelijkse gewoonten tot multi-disciplinaire consultaties en taboes rond zeldzame ziekten.

maandag 18 april 2016

Mommy is going back to school today!!
"Bring your parents to school day". Loved it!! Ej showing us around in her classroom... We started off with washing tomatoes, "washing tomatoes?" I hear you think... I was as surprised as you. Afterwards, pouring coffee, cleaning up her little table, putting everything back in the right place. She even painted for mommy, like a real artist.
"Mommy, now let's play the djembe", me:"excuses me??" "Mommy, the djembe, nooo not like that, like this" Children don't need things, they need parents who get down on the floor with them, they need to be challenged, not to the point where they give up, but tot the point, where they think:"Wauw look at me go"... This is the feeling I get every day when I drop her off at school....
"She never ceases to amaze me"

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