I’ve been told that I need to get out more often or that I need to do things for myself. Alone. Friends tell me to “let go” a little. They tell me not to worry and that my little guy will be fine without me for a night. I realize all of this but to tell you the truth, this is extremely hard for me. I was at a birthday party and a party go-er observed me caring for our son over the course of the party. We didn’t do anything special. I played with him on the floor, I snuggled him, I fed him…all the usual things I always do.…

An old friend of mine would occasionally call her child with medical complexities “broken.” I would smile and go along with her but it always bothered me and I couldn’t pinpoint why. I do understand the need to have humor in our lives. I understand that people all cope differently under stress and unusual circumstances. Believe me, our lives need laughter. But I kept thinking of what she said and thought that if she thinks her son is broken she most definitely thinks mine is too. Our son has a rare genetic condition, congenital disorder of glycosylation (PMM2-CDG). From his head to his toes, he’s affected by his disorder. The…