Thoughts from a CURE Parent…

Days Like Today-

These are the days no one warns you about. Yes, you get into a new normal with medically needy children, and you learn to balance the endless days at the hospital, the middle of the night ER trips, and the normal life doctors visits. This becomes your new normal. And you become ok, really ok, with this new normal. It takes time, but this is your normal now, and it’s good. What people don’t warn you about are the EXTRA life events that inevitably happen. The events that, for a normal person, causes stress. Holidays, anniversaries, weddings etc. Days that are supposed to be joyful… But instead, a stark reminder that your “new normal” of life isn’t normal at all. These are the days where your heart is in two places, because usually your child can’t attend such gatherings. A day where your whole family might be in pictures, minus your child. A day where people you rarely see will bombard you with questions about your life that seem sincere, but they don’t realize you’ve been asked all these questions 100 times all day long. These are the days that are the hardest!

To the parents or caregivers reading this, I see you. I see you trying to be happy, and possibly avoiding people. I see you struggling through your emotions and “trying” to have fun. Most importantly, I feel for you, and you’re not alone. It’s ok, EMBRACE your new normal! These harder days will pass.

To the family and friends reading this, remember our feelings might be different than yours. It’s a happy day, yes, and if we look sad, don’t take it personally. Also if the day is not about us, don’t make it about us. We don’t want to be the center of attention, it’s not necessary. Please don’t ask us how we are doing or what the current medical update might be. Enjoy the fact that we showed up, because it was hard for us, and help us enjoy the day as best we can.