I originally wrote this in October for Down Syndrome Awareness Month, in response to the prompt, “How You Have Changed.”

First, people with Down syndrome and other disabilities don’t exist for us, to  change us, make us better people or inspire us. Google “inspiration porn Stella Young TED Talk.” 

And also. 

I subscribed for a long time to the idea that intelligence is based on, and worth is derived from, academic performance. It makes sense that I would believe that: I benefited from it. When I learned I was pregnant with The OG, I started planning for her to be trilingual, play instruments, excel in multiple sports, earn a perfect SAT score. My husband wanted her to be a Supreme Court justice. Then I learned that The OG had trisomy 21. She’d had it the whole time I was making those plans; I just didn’t know. 

Her diagnosis suddenly forced me to reconcile two opposing ideas: that my daughter was perfect, valuable and worthy in every instance; and that a person’s worth was based on their intelligence, which was based on their academic ability.

I couldn’t reconcile them. 

I couldn’t and wouldn’t change my daughter, so I had to change my thinking. The OG taught me that a person’s worth has nothing to do with how smart they are. A person’s worth is fixed and inherent. My little Ukrainian gangster picked up where she left off. He keeps teaching me that intelligence has little to do with the ability to recall facts for a test: it’s problem-solving, the ability to read a room, making friends easily, learning and using multiple languages, the ability to take something apart and put it back together, and innately knowing that if you’re prepared to deal with the consequences you’re free to do anything you like.

My job as a parent isn’t to build a resume, but to love a child.

The OG’s diagnosis also forced me to face the truth: she probably wasn’t going to be a Supreme Court justice or get a perfect SAT score anyway. Extra chromosome or not, that kid was going to be exactly who she was. I’m fortunate that her diagnosis gave me the wake-up call early. My job as a parent isn’t to build a resume, but to love a child. I’m tasked with helping all of my children cultivate the skills, network and resources they need to live the life that they choose. Every kid has special needs. 

There’s no one-size-fits-all for parenting, and it doesn’t exist for intelligence, either. A person’s ability to perform and produce doesn’t make them more deserving of dignity and it isn’t the measure of their worth. A six pound three ounce baby girl taught me all that, and she didn’t even have to. She changed my life. 

Tierra

A malcontent with a heart of gold, Tierra is a first-year medical student, former high school teacher and history PhD candidate, plus mom to four of Bebe’s baddest kids. She curses a lot. Tierra is a DC native but lives in southwest Michigan and will happily exchange writing (hers) for cash (yours).