Recently our daughter Nicole, who is 21, spent a few days in the hospital. Because she has several impairments that resulted from her extremely premature birth, she cannot speak for herself. So my wife or I remained with her nearly every hour of her stay.
Even with excellent staff, hospitals can leave you feeling powerless and frustrated. As the days dragged by, I wondered, “If I feel frustrated, what must this feel like for Nicole?”
Besides all the strangers rambling in and out of her room at all hours to pull off and replace sticky bandages and check vitals, Nicole could not control even the most basic things: whether she wanted the curtains open or closed, what she wanted for her meals, whether she would prefer to look at a book or watch a video, whether she wanted the blankets on or off. As parents the best we could do was guess what she would like. Read more