If any new parent is facing a similar situation draw from the support group of parents who have children with bladder exstrophy. It really helped relieve our fears when we were able to talk to other families with children with bladder exstrophy. Circling the lodge are 12 comfortable cabins, each with cots, wood stove and electricity. There are shower and restroom facilities. All of this is on 5 wooded acres only a few minutes walk to the lake and river.
Every child is precious and has special needs.
Some needs are simple, some are complex and the needs of exstrophy children seem to be chronic. As you raise these children the road is challenging, filled with peaks and valleys. So many questions and a lot of unknowns. The parents of these precious exstrophy children should look at themselves through God's eyes. He has chosen these parents because they have the love, patience, extra intuition needed, as well as hopes and dreams that these children need.