lol, I know, I feel like a vampire now. And the doctor was right...when the sun hits me it burns like standing too close to a burner on the stove. So I carry an umbrella with me everywhere. 
You could be like one of those turn of the century southern belles - and carry a dainty parasol.
Laura, there are alot of kids who go through what you do, but theirs is a genetic defect call XP
(Xeroderma pigmentosum). They're also called moon children because they have to dress up in what looks like moon suits just to go outside. They cannot be exposed to any light at all. If you do a little research on the internet, you should be able to find peer resource groups that many parents use to cope with the situation and find some solutions that will fit into your lifestyle. It must be a pretty difficult adjustment for you because you didn't have these restrictions placed on you at birth
You also might want to try DNA repair créme applied to your face and hands or any other vulnerable area that despite your precautions might inadvertently get exposed to sunlight.
I would send you one, but I just sold my last one to a woman in Alaska. sorry
