I think, for me, the light sensitivity issues my girls have, is one of the hardest aspects of this journey with them. My other children love to be outdoors and they just don't. It hurts their eyes to the point that they just leave them closed. I once heard it described like this.
Imagine that initial reaction your eyes have when you're coming out of a dark movie theatre on a sunny day. That's what my girls see all the time. With no reprieve. There eyes are on constant overload from too much light. The picture below doesn't do that description justice, but I this picture when we first learned of our oldest's diagnosis. It helped me understand just how difficult things can be for them.
I can't imagine wanting to spend time outside if this is what I saw either. We try very hard to have them spend some time outdoors after dusk, when it is much easier for them to see, but sometimes I feel like we live indoors. The older Baby Sunshine gets the more she'll get used to it. That's how it was with Princess Cuddles. Now, with a little coaxing, she'll go outside during the day. Yes, sunglasses and a hat help, but only if you can get your one year old to wear them!