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To Medical Professionals Who Will Provide Care for Children With Complex Medical Needs

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I am a registered nurse for an amazing home visitation program for families who have children with special needs, and I work with nursing students. As RNs, we visit these families and do assessments and provide support. If there aren’t any home visits scheduled, I sometimes assign students old medical cases and ask them to present how they would medically assess the infant and assist the family in the home.

In one case, the baby had some pretty complex medical needs. I was absolutely floored when the students asked me how they should broach “family planning” with the parents. I must have looked puzzled, because they explained the mom and dad had other kids with this disorder and thought they needed to be educated on not having more children. They did not have questions about the complex medical needs of this child. My stomach churned and I bit my tongue. I walked in my office and grabbed a picture of my son (who has some complex medical issues) and I put it on the table. I said, “The minute you talk to me about family planning and the idea that I shouldn’t have more children like ‘this’ is the minute you will never set foot in my house again. You guys devalue a child when you do this.” I had hoped I’d gotten the message across when one of the students said, “Oh, I have heard that kids with Down syndrome can now live to be adults.”

This whole interaction prompted me to write some thoughts. I am writing this to everyone who provides care to children.

I am an RN and also a mother to six amazing kids. I spend my days working with families who have babies and children with special needs. There are things you need to know, things that these moms and dads need you to hear. Things I need you to hear: I wish you would see my child is flesh and blood, snuggles in the evening, and silly giggles when he’s nervous. He is a child first and has a diagnosis last. I wish you knew there were things I could teach you that you’ll never find in a book. I live with his diagnosis every minute of the day, and no one is more expert than I. My mother’s heart is in tune to every breath and hiccup, cough or sneeze. He does not speak well, but I understand him loud and clear.

I wish you knew I desperately desire my child to be valued. I don’t need you to point out his “inadequacies” or his failure to meet neurotypical milestones. I do need you to point out how well he is walking today and how he looked you in the eye when you called his name. I need you to see the whole picture. I have laid my baby in the hands of a surgeon, opened my home to every specialist known to man, and traveled hundreds of miles to wait hours in a waiting room, only to spend 10 minutes with a doctor. I have laid bare my heart and home to help my child. So when I miss an appointment or don’t follow through on a therapy, there is a reason.

I wish you’d move your eyes from your chart, and look. Look at my child and see that he is more than a piece of paper, a jumble of abbreviations, or a grim prognosis. He is more than a textbook or a medical journal. If you must label him, may I recommend “amazingly awesome.” There are days I’m lonely in a world of discrimination, ignorance and judgmental stares. But there are also days I am exposed to the most beautiful kindness and love, days when a milestone is actually a miracle, and a hard-fought battle is actually won. I wish you knew that “Oh, he looks normal” or “You must be a special person to raise a child with special needs” is not a compliment. I wish sometimes you would just listen. And hear. And see. Perhaps you’d catch a glimpse of who my child really is, not just what you read on paper.

Image via Thinkstock.

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Originally published: December 29, 2016
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