Not a joke.

I posted about this earlier this week. The comedy special where the comedian made a joke about people with Down syndrome. And I’ve read the responses by the comedian’s supporters.

Remember how I’ve talked about taking the “red pill”? About learning things that I didn’t know that I really needed to know? For five years, my eyes have been truly opened to the just purely discriminatory treatment of people with disabilities. And how horrendous that it has actually been for people with Down syndrome. The “r” word? Yes, it’s hurtful. But it’s a red herring. It’s a distraction. It’s a thing that people can cling onto. “Don’t be so sensitive.” “It’s just a word.”

There are still countries in our world where children with Down syndrome are immediately sent to institutions after they are born. There are countries in our world where toddlers are tied to a bed because it’s easier to “control the children” with developmental disabilities. There are countries today who take these same children, when they turn four years old, and send them to adult institutions. Imagine little Mia in an adult institution. At her age, she would have already spent a year there. There are countries in our world that still just let children with cardiac conditions go untreated and die.

It wasn’t all that many years ago in the United States when doctors wouldn’t bother treating the cardiac, pulmonary, gastric, and other conditions that go along with Down syndrome, and they let them languish in institutions and then die at young ages. Fourteen was a good life expectancy.

I watched a special once about a deaf woman with Down syndrome who was sent to a mental institution because her pediatrician told her parents it was the best place for her. So at seven years old, they left her there. She was ripped from the only home she had ever known and was sent to live away from her family on a doctor’s advice. There were notes from that institution that when she asked for a box of crayons, she was told that she was “too retarded to color.” Her twin sister ended up saving her from the institution as an adult after her parents passed away, brought her to California, where she was finally loved and cared for. She became an outsider artist, creating the most beautiful fabric sculptures. But those sculptures still captured a woman traumatized by years in confinement.

A few years ago, a man with Down syndrome was suffocated by off duty police because he “resisted arrest.” Meaning, he didn’t understand their command for him to leave a movie theater because he was following the directive of his caregiver to stay in his seat and wait for her to come back. He died screaming for his mother. He died over a $12 movie ticket because the police weren’t trained to handle developmental disabilities.

It wasn’t that long ago that Mia wouldn’t have been allowed in a typical classroom, where she is thriving today. I would have been told that it wouldn’t be worth teaching her because she would never learn. Karen Gaffney (a speaker and self-advocate who swam a relay in the English Channel) told a story about how her parents were told by a doctor that she would never learn to walk or talk. And thankfully, her parents didn’t believe it.

What we have done as a society to people with Down syndrome is criminal. It truly is. The harm we have inflicted on a group of people because they happen to have an extra chromosome has been catastrophic. And the fact is that it’s still happening. There are still places where these horrors still exist. Where children are told they are too “retarded” to be a member of society.

So, yeah, I guess I’m sensitive. Because my daughter deserves better than that. Because Mia should be able to walk out of her house without worrying if someone is going to call her a name just because she has slanted eyes and a flat nasal bridge. That people will determine her value because of her chromosome makeup. She deserves to be heard. To be appreciated. To be valued. And I will make sure of that, don’t you worry. But that’s not enough.

Because I want her to live in a world where people fight less for the right to use a derogatory word and fight more for people to be loved.

Not rainbows and unicorns.

“You may encounter many defeats, but you must not be defeated. In fact, it may be necessary to encounter the defeats, so you can know who you are, what you can rise from, how you can still come out of it.” ― Maya Angelou

Every once in a while, someone asks me to talk to a new mom with a Down syndrome diagnosis. Sometimes it’s a doctor, sometimes a friend, sometimes a therapist. I’ll be honest, before I say yes, I have to consider, “What stage are they in?” And “What stage am I in?” There are stages, you see. And sometimes I’m not sure if I’ll help or hurt.

Because Down syndrome isn’t always rainbows and unicorns. And sometimes you just don’t feel all that thankful.

Sometimes, you’re sad. Or mad. Or defeated. Or hopeless.

I had one of those weeks. Those weeks when the gap between Mia and the typically developing kids in her class felt like a chasm. And no matter how great her teachers tell me she’s doing, I think, “Compared to what?”

One of those weeks when I’ve been working on a skill with her for months, and I just think she’ll never get it.

One of those weeks when I just want a normal family. And a normal relationship with my daughter. When I just want her to tell me about her day. When I don’t want to hear about it from a piece of paper in her folder.

One of those weeks when I just stop telling friends how Mia is doing because they say something like, “Well, typical kids do that, too.” And I look over at my daughter and realize they don’t really understand.

One of those weeks when I’m afraid to say what I feel because people will think I don’t love her.

Because I do.

There are stages, you see.

Because it isn’t easy. And I think that’s what I really want to tell a new mom with a diagnosis. There are weeks when you feel like your kid could conquer the world. When you see what true human potential looks like.

Then there are weeks when you realize what one little extra chromosome can do to a person. When you see the differences and they hurt so damn bad. When you wish everything were different.

And it’s all okay. Because what you are doing is not easy. It’s actually really, really hard.

I hate the statement, “Special kids are given to special people.” Because it’s so not true. Special kids are given to plain old ordinary people, and then it’s not their kid’s potential they have to worry about, it’s their own.

And sometimes you just feel like a big failure. And sometimes you feel like you were blessed with the most wonderful human being on the planet. And your own potential for love is limitless.

Because there are stages.

Here’s to a New Year and new stages. Limitless potential and epic failures. And everything in between.