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4 Things I Wish Doctors Wouldn't Say About My Medically Complex Child


After seeing at least 100 doctors for my 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 patients (and their parents) live with their disease 24 hours a day. They know it inside and out, from morning ’til night, every day of the year.

It astonishes me when I think back and remember what doctors have said to us in the past. Here’s the highlight reel:

1. “Mrs. Burke, I need a break.”

Please, don’t say this to an overstressed, worried mom! This is the last place we want to be, exposing ourselves to all the germs your wonderful office has to offer. Instead, treat us with love and compassion. After all, we are only doing our best. Did I mention we are overstressed and worried?

2. “You should take care of the other 75 percent of your family.”

What does that mean? Should our sick, needy newborn live somewhere else because we are busy taking care of everyone else? That’s not why we have children. Please acknowledge our situation. Support would also help a lot.

3. “Children like this don’t live at home.”

Well, since my children live at home, 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 respect our decision to take care of our kids as we see fit.

4. “Stop worrying, they’re fine.”

Please don’t minimize my role as my children’s mother. A blind 1-year-old who is not holding her head up, rolling or sitting is not fine. A baby who has had no head growth in seven months is not fine. A toddler who loses consciousness and ends up in PICU for three weeks is not fine. Understand that a worried mom knows her child. It’s 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.

A version of this post originally appeared on The Heartful Mom

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