Do parents ever say, “I didn’t realize how hard caring for my child at home was going to be”? 

Complex care pediatrician Dr. Elaine Lin shares that parents have expressed to her their surprise that the home is not like the hospital and that they underestimated how hard home care would be (including practical stuff like transportation, taking a shower), and the impact the care would have on the family, including when there is a shortage of reliable nursing. She validates the parents’ feelings, and tries to think through all the options: e.g. short term respite, mental health support, connecting families with each other.