I parent two children with disabilities, which means I’ve lost count of the number of people who have said to me that parenting my kids must be “so hard.” That my life  must be “so hard.”

Some of these comments come from strangers. It has happened as I’m lifting the wheelchair into my trunk, or when strangers listen to my daughter with Down syndrome talk. 

It especially puzzles me when those comments come after pretty awesome moments that happen in public. Like my kid receiving an award at school, my kid and I dancing to the music at Target, or when buying ice-cream.

Those comments have even come from family and friends. That’s when it hurts the most.

I do not speak for every parent, nor do I claim to do so. I want to make that clear. But I want to respond to the people who have told me that parenting my kids must be “so hard.”

Dealing with negative attitudes and assumptions is what makes our lives harder.

It is other people and systems that make our lives harder.

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It’s the education system that undervalues disabled students that makes our school experience harder.

It’s the medical system that refuses to cover the care and resources my children need to thrive.

It’s the negative disability attitudes, especially the prevailing attitude of pity often disguised as “niceness” — yet blatant ableism — that suggests our lives are “so hard,” yet not the reality of my children’s diagnoses.

Before the pandemic — back in the day when I spoke at conferences — I sometimes asked the audience to give me words they thought described my life as a parent of disabled kids, then I wrote them in a white board for everyone to see. The words I most often heard were: hard, exhausting, complicated, lonely, expensive.

I then turned to the audience and asked them how many parents could use the exact same words to describe their parenting. 

Almost every hand goes up, because parenting, in general, can be all those things.

Listen, parenting is hard. Ask any parent, go take a poll. Many of us will say this parenting thing is the hardest thing we ever had to do.

And yes, parenting my kids in an ableist world makes it even harder than it needs to be. But not because of my kids. Not because of who they are. Not because of their diagnoses. It’s hard because this ableist world fails to consider the lived experiences of disabled individuals, failing to see them as fully human, or deserving of dignity and respect. But these attitudes are not acceptable.

That is a fight I will keep fighting alongside my kids.

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So to the strangers who see us doing life — when we can finally be out again and the pandemic is a thing of the past — no, parenting my kids is not “so hard.” 

Instead I will tell you what it is:

It’s like having teenage girls, because they are teenage girls.

It’s summers at the lake (because we live in Minnesota and there are so many lakes).

It’s summer grilling.

It’s celebrating birthdays.

It’s laughing at funny jokes. 

It’s watching movies together.

It’s spontaneous dancing in the living room, or the kitchen, or the bathroom, or really anywhere. Because we are that kind of family that dances throughout the day. It’s what we do. 

It’s each family member claiming we are the dog’s favorite. For the record, I am his favorite.

It’s lots of hugging, even amongst the three teenagers.

It’s lots of words of affirmation, from “I want to see your beautiful face” when I get woken up in the morning, to unending statements of “I love you” and “you are my best friend.”

It’s, “Mom! My sister won’t leave my room, tell her to leave me alone!” Because they are teenagers, remember?

It’s doing makeup.

It’s homemade meals and someone saying, “I don’t like it.”

It’s caring about social justice issues that affect my kids, and I will fight anyone who believes my kids shouldn’t have the same rights as other kids their age. Hello school system, I’m looking at you. Hello future employers, I’m looking at you too, because you don’t get to discriminate based on disability or pay someone less than minimum wage simply because they’re disabled.

It’s life. Because here’s the thing: disability is a part of the human experience. It always has been. It always will be.

And we will continue to have brothers and sisters, and sons and daughters who are disabled. And that is not a lesser way of living.

Parenting my children with this abilities is not “so hard.” 

Having to daily live in an ableist world? Now that is hard.

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Image by Quang Nguyen vinh from Pixabay.