A mom of a son with cardiomyopathy describes how during the first few months of her son’s life in the NICU, she and her husband were given little direct guidance. “I think our son was cared for very well and I think a lot of the uncertainty we were feeling was because there was a lot of unknowns. Looking back now, there is still a bit of anger there that there wasn’t more support for us as new parents. This is your child, this your new normal, this is your life. There wasn’t many opportunities to grieve the loss of what we thought our life as parents would be.”
