Troubles.

“Man only likes to count his troubles; he doesn’t calculate his happiness.” ― Fyodor Dostoyevsky

I’m not going to lie. It has been a rough week.

I’m not sure when it started. I think it started on Friday when someone asked me a question when they met Mia. “Does she drool?” She doesn’t, by the way, she was just happily blowing raspberries in her stroller before I turned her around. She was bored. It stung.

And then I see it again – the list of things that are wrong. She is almost 22 months old and has poor postural support because of low muscle tone. She’s still using jargon and babbling, but she’s only using maybe two-three spoken words. She’s diminutive and immature looking when she’s with her peers. She can’t walk independently. I start seeing it, and the fear starts again. What is this going to be?

And then I was leaving the grocery store on Tuesday and I saw something else. A mom was walking in hand-in-hand with her daughter and I saw the tell-tale sign, and not the fact that she had Down syndrome. Her hair was just growing back. Leukemia. I don’t know that for sure, but it’s the first thought that popped into my head. Leukemia. Cancer. I walked back to the car with a knot forming in the pit of my stomach.

And then it all came flooding back. She has a hole in her heart. She has hypothyroidism. And people with Down syndrome have a high likelihood of childhood leukemia. I need to get her blood drawn in September. What is that going to show?

It was a rough week.

It was one of those weeks that I just didn’t notice her. I was just noticing Down syndrome.

And then I woke up. Her speech therapist was working on a skill yesterday, and she stopped with wide eyes.

“What?” I asked.

“Sometimes I forget that she’s not even two yet.”

“What do you mean?”

“I wouldn’t expect her to do these things at her age.”

And that’s what I hate about this diagnosis. I hate that it’s always a heartless chronicle of what she isn’t, of what’s wrong, and what she might never be. I hate that sometimes I only see these things. I hate that it’s a constant comparison to “normal.” I hate that we are just categorizing humans. Normal, delayed, “insert diagnosis here.”

I wish that I could just celebrate my awesome daughter who is doing amazing things every day without caring about her chromosomes.

It’s just one of those weeks.

Happy.

“To be yourself in a world that is constantly trying to make you something else is the greatest accomplishment.” ― Ralph Waldo Emerson

A friend of mine and I have been discussing something interesting lately. Both of our kids with Down syndrome have been acting like typical toddlers – throwing things, temper tantrums, total destruction, asserting independence, and stubborn attitudes. For some reason, both of us had this idea that we’d skip this phase – the toddler phase. I didn’t really quite understand why I thought this until Mia’s speech therapist said sarcastically, “You only thought that because everyone told you she would be happy and easy going. Didn’t you know all kids with Down syndrome are happy all the time?” I laughed because, of course, I’ve learned that is not true at all. Kids with Down syndrome are like every other kid. They have bad moods, cranky times of the day, sad moments, and happy times. Just like everyone else, they are complex individuals, not just grinning automatons.

So now I have a toddler who needed to be removed from Best Buy the other night because she was having a tantrum because I wouldn’t let her explore the appliance section. I’ve been thinking about how all of these stereotypes formed over the years. Why would people assume that every kid with Down syndrome is happy? Was it part of some sort of reassurance for the parents? Well, don’t worry they will be happy. They won’t have a care in the world.

The reality is that people with Down syndrome do have cares, a lot of them. They have just as many as everyone else. I think that often in order to help the family, we talk about children with Down syndrome as being happy, angels, blessings, but don’t acknowledge that they are unique individuals with hopes, dreams, goals, sadness, and struggles. They happen to have an extra chromosome, but that doesn’t take away their humanity.

As we raise Mia, I think one of the biggest hurdles we’ll face is allowing Mia to be an individual in spite of these cultural stereotypes. How do we let her uniqueness shine through, even though society wants to confine her. At least Fynn is good at letting her be who you don’t expect. He introduces her this way, “This is Mia. She’s my sister. She is a trouble-maker. She makes so much trouble.”

I can’t wait to see who Mia will become. I’m sure there will be so much trouble. I’m counting on it.