Your child’s serious or life-limiting condition can feel overwhelming and deeply upsetting on multiple levels. You have new information to absorb, questions to ask, decisions to make. Your hopes and dreams and expectations for your child and family now shift.
You may feel profound sadness, anger, frustration. You may experience grief that starts now, at the beginning as you contemplate the loss of what your expectations were for your child, and not just at the end of the journey and beyond. And you will also experience hope and even periods of great joy. Please know this: you are not alone. We have been there too.