This is such a thought-provoking topic, @colleensteele. I used to think this meant to me that someone wakes up every day with PH and sees the things that we deal with. I felt that a few weeks would be good because we never know what the day may bring.
Now, maybe I have “grown” a bit. I just want them to read and understand what I go through. I would not wish my PH life on anyone. I just would like a little bit of compassion and empathy, not sympathy. Family and loved ones need to be more educated and want to learn more about PH. I think this would help them better understand the things that I deal with.
As a parent of a PH child, what do you think this means? Is your perspective different now that right after the diagnosis?