“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.