Full disclosure.

Life is really simple, but we insist on making it complicated. – Confucius

There are a lot of things about Down syndrome that aren’t normal. I’m just going to say it. Let’s put that right on the table for a minute. Most people don’t have therapists, social workers, cardiologists, ENTs, or endocrinologists assessing their child. Not very typical. Although, even though I listed all of those things, no one of them is really a major thing. A lot of the health assessments for Down syndrome are routine. Doctors know what to look for and they stay ahead of symptoms…you know…instead of letting kids die like they used to. Don’t get me started. Humans have a tendency to suck sometimes, if we’re being honest.

I feel like lately I’ve been a little dramatic on the blog. Lots of talk about bigger, better, extraordinary. And it’s true. I want all of those things, and I’m working my butt off to be all of those things for my kids, but let’s be honest about where we are right this minute. So right this very minute, Mia is:

A toddler.


She does toddler things.

Terrifying, I know. I spend most of my days gripped in fear.

She does so many scary things like:

Blowing bubbles

Mia Bubbles

Reading books

Mia Reads 1

Eating Cheerios

Mia Cheerios

Looking at penguins at the zoo

Mia Penquins


Mia Colors


Mia Dances

Watching Sesame Street

Mia Sesame Street

And the scariest thing of all…selfies

Mia Selfies

I just don’t know how we’re going to make it through. Pray for us.

I read a very wise quote once on a blog by Kelle Hampton (who has a little girl with Down syndrome) that the great thing about life is you only have to live it one day at a time. In all seriousness, who knows what life will look like for ANY of us in 20 years. But you know what? I don’t have to live that life right now, and even when I get there, I only have to live it one day at a time too! It’s sort of an amazing thing.

So here’s to living on Tuesday, September 29, 2015. Enjoy your day, one second, one minute, and one hour at a time. I’m sure we’ll be spending it doing very scary toddler things…like making ourselves dizzy.

Not at all what I thought it would be

“If you are always trying to be normal, you will never know how amazing you can be.” ― Maya Angelou

So the big 3-year birthday is just around the corner. I’ve been feeling pretty nostalgic lately, thinking about when Mia was born, what I was feeling prior to her birth, and what life is like now.

I’ve only partially written about the day of her birth. One of my biggest regrets from that day was how few pictures I took. Nate reminds me that there was a lot going on and we were pretty freaked out, but I wish I had more newborn Mia pictures and videos. I also regret how terribly sad I was. I know it’s normal to feel sad. The death of a “dream.” Blah, blah, blah. I’m sure I’ve said it a hundred times and even to new moms. But looking back, I wish I had known I didn’t need to be so sad.

I wish I would have known whom I would be taking home. The newborn stage is hard whether you have a child with a disability or not. You just don’t know who your kid is going to become. You sort of wait for those first smiles because you’ve gone weeks or months without any feedback besides some tiny indications of what their personality will be like. And when Mia smiled for the first time, I was hooked. Her smile lifted the fog off of me and gave me that first tiny feeling that things might turn out okay, great even.

So whom did I take home? I’m going to be honest. I was not prepared. I think I prepared myself for an awful lot. I prepared myself to be sad. I prepared myself to be disappointed. I prepared myself for a lot of worst-case scenarios.

I was not prepared for Mia. Nate and I just said it this week. “Did you ever think that THIS is what it would be like?”

I know everyone’s “journey” is different. I sort of hate the word “journey” now. It’s like you’re on some special quest, not just living life like everyone else. If I’m on a journey, then so is every human on Earth. How about experience? Acceptance? Life? We all live unique lives, so my experience with Mia is my own.

This is how I would describe Mia: Every day I wake up and it’s like I’ve stepped into a Charlie Chaplin movie. I have a silent little friend who understands every single thing that is happening around her. She uses gestures and facial expressions to get her point across. She is funny both intentionally and by accident. She can be feisty and naughty and she can be kind and loving. When she’s mad, it’s like a tiny Tasmanian devil shows up. And when music starts to play, she can’t help but dance. There is never anything fake about Mia’s smiles. She smiles with her entire face. Sometimes I think she smiles with her whole body. And when you get her to laugh, it is literally the most beautiful thing I have ever heard.

Life is very good, great even, at our house right now. Mia does all the things you would expect a two year old to do. She colors, paints, plays mommy with her dolls, plays dress up, looks at books, plays with puzzles and everything else you would imagine. And like every other almost-three-year-old, she has discovered the iPad exists and she’s very interested in it.

It’s not at all what I would have expected. And I know my expectations were clouded in fear. I was so afraid of what I didn’t understand that I couldn’t see how beautiful her life could be. I was so desperate for life to be “normal.”

For a long time, I used to say that Down syndrome would not define us. And the funny part is that it while it may not have defined us, it definitely has refined us. Mia’s diagnosis has made me take a step back and look at our life with an entirely new viewpoint. Life is never going to be “normal.” And those words have proved to be the most freeing words of my entire life. If our life is never going to be normal then life is now entirely up for grabs. Normal got thrown out the window, thank God. Which left open the very real possibility of extraordinary. And that. That is what I never, ever expected this to be like.

Bring on the birthday. I’m ready for extraordinary now.