We have seen at least 100 doctors for the kids in the last 28 years. There are two things that stand out: the really good ones and the really bad ones. Please, if you are a doctor and reading this, know that your patient (or their parents) live 24 hours a day with their disease. They know it inside and out, from morning till night, every day of the year.
It astonishes me when I think back and remember what doctors have said to us in the past.
“Mrs. Burke, I need a break.” Please, don’t ever say this to an overstressed, worried mom! The last place we want to be is at your office, exposing ourselves to all the germs your wonderful place has to offer. Instead, treat us with love and compassion. After all, we are only doing our best. Did I mention we are also overstressed and worried?
“You should take care of the 75% of your family.” What does that mean? Should our sick, needy newborn (MaryEllen) live somewhere else because we are busy taking care of the rest of us? That’s not why we have children. Please acknowledge our situation and treat us with love and compassion. Being supportive would also help a lot.
“Children like this don’t live at home.” Well, since we live this life, I can say, yes, they do. Children ‘like this’ enjoy life and want to be with their moms and dads. And we want to be with them. We are a family so please treat us with love and compassion and respect our decision to take care of our kids as we see fit.
“Stop worrying, they’re fine.” Please don’t minimize my role as my children’s mother. A blind 1-year-old that is not holding her head up, rolling, or sitting is not fine. A baby that has had no head growth in 7 months is not fine. A toddler that loses consciousness and ends up in PICU for three weeks was not fine. Understand that a worried mom knows her child. Please take the time to listen and treat us with love and compassion. It is not easy doing what we do, even on a good day.
And to the doctors that treat us with love and compassion, thank you. Thank you from the bottom of my heart for being there when we need you and for saying the right things at the right time. Thank you for understanding. Thank you for seeing our children as people, not disorders. Thank you for sitting with us in a cold hospital corridor while we pray for our child’s life. We couldn’t do what we do without you.