This article written by Marie - mum to a little boy called Jack who is 4 with Apert Syndrome- is amazing.
It describes with such sincerity and accuracy, how we feel and what we experience with our little guy.
Please take the time to read it. It is insightful, educational, and moving. It is also provides a wee glimpse of what life for these little ones and their families and friends can be like.
I am in awe of Marie for capturing in words, what is often so difficult to comprehend, let alone repeat.