First, let me recommend You Will Dream New Dreams.
It can be a little schmaltzy, and it is a bit dated, and only one of the stories has anything to with Craniosynostosis specifically. Especially if your child has a syndrome that comes with their cranio, the other stories might be helpful as well. It also has the famous Holland Story in it.
Here are some other articles that might be worth reading:
*Accepting Your Child's Disabilities: Truth and Perception*
*When I'm a Mother, I'll Never Or Mac 'n Cheese and TV*