“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.