What would you miss the most if you could not take your children outside when ever you wanted to? Would you miss the walks, the playing in the yard, the beach, the picnics,or being able to pick up and meet friends at Disney when ever. The other day I was talking to another mother of a child with TTD and we both agreed that this awful illness stinks no matter what but one of the hardest things is having to watch your child watch the world from a window. Watch the children that walk by, watch his sister playing in the backyard, or just watching life pass him by. This puts such huge limits on us as a family. Yes, we push the limits every once in and while. We slather him in sun screen, put his UV clothing on, and put his cooling vest on BUT we can not do this often. It is really like a game of Russian rullet. One day Collin might handle it just fine and the next time he might start seizing, blister, burn, or just get sick. Today a mother asked if I was putting Regan in the pre-k summer program. I explained to her that I didn't want to put her in summer school because that would be the only time that I would have to take Regan to the beach or play while Collin is in summer school. I had to explain to her about Collin and all of the things that can happen to him during the summer when it is hot and and UV is high. She looked at me with the saddest look. She told me all of the wonderful things that she loves doing with her family in the sun in the summer. She said she couldn't imagine giving any of it up. Collin has always been this way so this is nothing new and we are very used to it, doesn't make it any easier, but we are used to it. Even when Collin is not with us Regan will look for the shade. It is very much part of him, part of us as a family. I have to say that one of the things that I wish I could have would be a beautiful, sunny, warm day at the beach with both of my children.
What would you miss if you had to hide from the sun this summer??