From an EB Mom:
“Don’t sweat the small stuff”…..people often say that. There is one character trait among EB parents that I have noticed to be true. We “sweat the small stuff”. Like if the laundry is folded, if the permission slip was signed, if the appointment was made, if we are 5 minutes late, what we will make for dinner, or if the floors need to be cleaned. Those “small things” keep us up at night, cause our anxiety, and our bad moods. BUT…we can accompany our children into operating rooms to attach central lines with ease. We can calmly peel the bandages off our children while they bleed in a bath filled with chlorine and play legos at the same time. We can sit in a room filled with educators and work as a team to decide how to best educate our children. We can hold conversations with Head Doctors at large healthcare facilities and talk medications, infection control, nutrition, gi complications, and the future of research as though we are experts. I have seen mothers and fathers gently distract their newborn babies with soothing voices and singing while they are also lancing blisters with needles and applying bandages to kicking little feet. For almost a year now…I have watched my good friend Vanessa Delgado hold it together for her son Anton. Anton has suffered tremendously physically for months now. Any human parent would have broken down by now. She has not. She has continued to be joyful, faithful, hopeful, and loving. Anton’s world has been OK in his mind because of it. I can promise…there is no greater task than being brave in front of your child while they are dying. Today I want to recognize all of the parents who have put on their “game faces” in the moments that most people would crumble. I have never felt more honored to be part of this community of EB people and their parents.