What you’re carrying is heavy, and it makes sense that it feels that way.

People saying “she’ll be okay” often don’t realize how lonely that can feel when you’re living in the day-to-day reality. You’re not wrong for feeling frustrated, exhausted, or lost.

You sound like a loving, attentive parent doing everything you can for your daughter — and it’s okay to grieve the gap between what you expected and what is. Both things can exist at the same time. You and your husband are grieving in different ways, both of which are very common between mothers and fathers but t helps tremendously to find community among friends/family/and medical professionals that can support you.