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The Question People Need to Stop Asking Me as the Mom of Two Kids With Disabilities

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There is one question I receive quite often, even now, four years into my daughter’s life and two years into my son’s. I hear it during initial educational evaluations. I hear it in different community settings when an acquaintance is first invited to cross over that proverbial line into friendship. I hear it even from my own doctors.

“Did you know about your children’s conditions before they were born?”

My daughter has Down syndrome and my son has an upper limb difference. Neither of them inherited these conditions, so our family has had to start from the beginning in learning everything we can to help them grow to their fullest potentials. That said, they are an extraordinary pair and I can’t imagine life without them. My daughter has the empathy of a saint, and every time we turn around it seems my son has learned something new.

My husband and I regularly receive undeserved compliments simply for being the parents of two very unique little children; we receive unwelcome sympathy for the same reason. We have been told we’re brave for handing our daughter over for open heart surgery when she was 10 weeks old — the alternative would have been watching her die. We have been told we’re patient and strong as we watch our son learn to navigate the world in a way we cannot teach him — the alternative would be withholding life from our spirited boy. We are not brave for keeping our daughter alive, and nobody is privy enough to our lives to know whether we are patient or strong as we raise our son.

Yet all of this pieces together a puzzle some people really want to figure out: Did we choose this or are we surviving some difficult life that has been thrust on us against our choosing?

There are assumptions built into the question, which change depending on who is asking and what their frame of reference is as they approach the topic. But answering doesn’t merely feed a curiosity — it perpetuates the stigma associated with parenting a child with a disability. Our family lives with Down syndrome. Our family lives with limb difference. We are passionate about inclusion and acceptance. Whether we found out when I was pregnant or when our children were born, which was once a critical piece of our story, is inconsequential at this point. We love them unconditionally and have absorbed our children’s differences into our lives with open hearts.

If there’s one group of people who can ask the question of whether we had a pre- or postnatal diagnosis, it would be the parents in our particular communities. I do not mean to sound exclusionary when I say this, nor do I want to break any bridges between ourselves and the general population who might be willing and ready to learn about our experiences. But there is a deep-rooted difference between looking at someone else’s life with sympathy and assumption and joining someone else’s journey with compassion and understanding.

Getty image by Tariktolunay.

Originally published: January 24, 2020
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