On Valentine's Day, I had a chat about school with the nurse practitioner at Collin's neurologist appointment. She was voicing concerns about the risk of sickness in a typical classroom.
"With kids like ours," she said, "the most important thing is quality of life. We want them to have the healthiest, happiest life possible."
At an earlier point in my grieving and healing process, I would have been hurt and taken strong issue with her comments. Aside from lumping together all kids with complex medical and developmental challenges, the statement seems to assume that things important to typically developing kids aren't important for kids with disabilities.
But I know this woman, I know her heart on the issue, and I'm further along in my journey now. So when she said those words and the pain scraped at my heart, it wasn't from offense.
Instead, I saw the faces of my nieces, of my friends' children, and I wondered whether a doctor had ever said words like these over those kids. Had experts ever encouraged their parents to focus on what's most important? Did those families feel empowered to let go of the nice-to-haves when push comes to shove and hold onto the precious no matter what?
It was the first time I remember wishing that something said about Collin could be said for all kids. I wished that we could all look at each other and say, "With kids like ours, the most important thing is quality of life." And then help each other sort out what that means.