Some diagnoses have a projected trajectory and you can anticipate how your child’s issues and complications are going to go. Others do not, and parents and doctors cannot project lifespan or how the child’s condition is going to progress. Regardless, there are always ups and downs along the way and living with a child with a life limiting illness is an exercise in accepting uncertainty.  

Baseline is really just a technical term for “the new normal” – it is the opposite of an acute moment or event. It is where things are when they are stable. With children living with illness, the baseline shifts, and often it shifts down over time like steps, where each lower step represents a lower level of functioning. While the Ups and Downs continue, the Ups are, over time, not as high as they were and the Downs are lower. With a declining baseline, the final step is end-of-life.