I held on way too long. I knew it wasn’t a great idea. I knew that eventually I’d have to stop. But I loved the ritual, the closeness, the quietness of it. But Saturday, it just hit me. It was time.

I stopped rocking Mia to sleep.

She didn’t always need it. She could fall asleep on her own just fine. But she still fit so snugly on my lap, and it was 20 minutes of quiet closeness with my wiggly, busy 5-year-old.

But it had to end. She’s not a baby anymore.

But my heart.

There are a lot of really difficult things about parenthood, but I think the worst is the endings. Time just keeps ticking along, and I’m so proud of them and heartbroken all at the same time. Like one last time after another.

Tonight it hit Mia, too. She realized that we weren’t going to be rocking anymore. And her lip quivered, and I gave her a hug and said, “Change is hard, I know.”
And then from behind me, “Change is a part of life, Mia,” said brave little guy who has seen more change than an 8-year-old should.

I underestimate my kids a lot. And I don’t think it’s because I don’t trust them or I don’t think they can do it. I think it’s just because watching them become more and more independent is so bitter sweet. I want them to be independent, but I still want them to be my babies at the same time. I underestimate how much they understand, how resilient they are, and how strong they are.

I’ve seen so many big changes in Mia over the school year already. Participating in class, making new friends, using more words. She’s growing up.

And I’ve seen so many changes in Fynn. He’s adapting and growing, loving learning and reading, and helping around the house. He’s growing up.

All three of us snuggled in bed tonight reading stories. Mia was still getting used this change, and she would sniff a little, and start to tear up, and Fynn would hug her and make her laugh. And then I said good night and kissed her on the cheek and Fynn kissed her other cheek.

Change is a part of life.

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The Red Pill, continued.

Neo, sooner or later you’re going to realize just as I did that there’s a difference between knowing the path and walking the path. – Morpheus, The Matrix

Almost three years ago, I wrote a blog called The Red Pill. I answered the question, “If you could take away Mia’s Down syndrome, would you?” My answer was no.

In three years, a lot has changed in my family. I read my old blogs and think, “You should have known the tsunami was coming.” But I didn’t, and that’s okay. And in this particular blog, I wrote, “No one ever promised an easy life.”

In two days, Mia will be five years old. Since I wrote The Red Pill, Mia has been through preschool, daycare, and has now started K4. Three IEPs and therapists. Three different teachers and then daycare teachers. Two echocardiograms, a set of orthotics, blood draws, endocrinologists, a night in the emergency room because she wasn’t able to breathe during an episode of croup.

So now that I’ve walked down the path for a few more years, having to let go to different people, being immersed in a new reality both at home and school, and starting to really see what all of this means for the future. Would I take it away?

Disability is terribly unfair. It’s incredibly difficult to watch Mia struggle. In fact it just sucks. It sucks. The fact that Mia has a disability that is all encompassing sucks. There is no sugar coating it. I can wrap it in rainbows and unicorns, but it doesn’t suck any less.

There are experiences that she may never have because of her disability. College, marriage, motherhood. All of it was written before she was born. A mistake in cell division. One little extra chromosome.

Disability is terribly unfair.

But would I take it away?

I wish I didn’t have to fight so hard. I wish I didn’t have to be constantly vigilant. I wish I didn’t have to worry about her being accepted. I wish she didn’t have a heart defect. I wish that she would start talking more. I wish she wouldn’t have to struggle.

But here’s the thing. Wishing away Down syndrome is wishing away Mia.

As I said in that other blog, Mia isn’t sick. She didn’t develop a disability over time. The very blueprint that makes her who she is has a tiny extra chromosome.

Who would Mia be without Down syndrome? While her disability doesn’t define her, it’s part of her.

From her sandal toes, to her flat nasal bridge, to her trans-palmer crease, to her slanted eyes…to her stubbornness, kindness, independence, and spunkiness. Down syndrome is part of every bit of who she is. At the same time it’s not who she is. She’s a little paradox. And that’s what makes her so … her.

Because life is better with her, exactly as she is.

So once again, even three years later, I’ll take the red pill.

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A birth story. Almost 5 years later.

“Only people who are capable of loving strongly can also suffer great sorrow, but this same necessity of loving serves to counteract their grief and heals them.”
― Leo Tolstoy

It’s Down Syndrome Awareness Month and I realized the other day that I never did write down Mia’s birth story. I did write a sort of blog announcement, but that was public relations Erin talking. The face I put on like a shield. It was a cozy place to retreat to at the time. So here it is.

Mia’s birth story starts quite a while before she was actually born. It started during my 20-week ultrasound. I wasn’t working at the time, so finding a babysitter was a problem, and we brought our squirmy 2 (almost 3)-year-old along. Our ultrasound tech was very professional, pointed out body parts and a healthy heart beat. She told us we were having a girl, and we smiled and giggled because we got to have one of each. But her face darkened. I distinctly remember that. She had a sort of grimace on her face, smiled a tight smile, and said, “[The perninatologist] will be in shortly.”

He came in briskly, sat down in the chair, and got right to work looking again. I knew something was wrong. Something felt different about this time around. And then he sighed, looked up from the screen, and said, “What do you know about Down syndrome?” I remember describing it once as someone pushing all of the air out of my chest and then sitting on it. I don’t remember a lot about what happened next. He talked about soft markers, and the only way of knowing would be an amnio, and that termination is an option, but only for 4 more weeks. It went by in a blur. I tried to get out of that conversation. I couldn’t process it. I remember asking if I could talk to my OB. I just wanted to run away. And he kept telling me it wasn’t necessary, and what she said didn’t matter. I finally said I needed to think. Nate spoke up and said we didn’t want to terminate so why have an amnio? And then he said, “Good luck.”

And then I waited it out. The early blood test was not available. I was 9 months too early for that. Prenatal counseling was non-existent. I was offered nothing. No one offered someone for me to talk to (aside from my friends), no one gave me information. No one said anything at all, except, “Well, we’ll find out when she’s born.”

It was 5 months of pure torture. Grief, hope, despair. You name it, I felt it. Instead of happily buying baby girl clothes, I would just think these dark thoughts like, “Should I name her? What if she dies?” While Nate traveled, I’d sit in our apartment researching soft markers and wondering if she’d be one of the 96% of kids who have this specific soft marker and are born with a typical set of chromosomes.

And then in my desperate searching, I ran across two websites – two mommy blogs that turned the tide a little bit – Enjoying the Small Things and A Perfect Lily. I remember the first picture I saw. The most beautiful little blonde girl helping her dad wash a car. And in my head, the world was an entirely different place. If you ever wonder why I post about Mia and write about her, it’s because that moment changed my entire perspective. Sure I was scared out of my mind, but that photo made me believe, for a moment, that life might be beautiful after all. And I think that maybe someday, someone will run across my blog or my photos of Mia doing typical kid things and drag themselves out of that dark place, too.

Even though I comforted myself with these families living typical lives, I was still holding out this hope that Mia would be born without Down syndrome.

She made me wait 5 long days past her due date. She was actually due on Halloween, but I went into labor on Guy Fawkes/Bonfire Day. It was more fitting anyways. Remember, remember, the 5th of November.

Honestly, the actual birth was easy. Easier than Fynn, even though she was a big baby, just like Fynn.

They put her on my chest and I didn’t see it. I saw her blonde hair and blonde eyebrows. I picked up a hand and looked at it, and no transverse palmar crease – because I remembered that was a thing. (It was on the other hand.) I thought, “Whew, she doesn’t have it.” And for 30 minutes, Mia didn’t have Down syndrome.

Then the nurse picked her up in a strange way, looked into her face, and turned to me, “I’m going to call a NICU nurse down.” And then the other nurse arrived and the two nurses argued about whether or not they thought Mia had Down syndrome. Then the NICU nurse walked over to us and said, “You knew ahead of time, so this isn’t a surprise, but I think your daughter has Down syndrome.” I said, “Oh, well, should we just order the chromosome analysis?”

The nurse shrugged, said, “Well, I’m telling you she has Down syndrome.” And then she left.

And then we went to a normal room. The nurse, in a hushed voice, told the nurse on duty that “This is Mia; she has Down syndrome.”

The rest of the day is a little foggy. I remember being fine. I was fine. Mia didn’t go to the NICU that day. She stayed in the room with me. I sort of kept wondering if she was going to die. Like, what happens now? No doctor came to talk to me. No one examined her. I kept wondering if I should say something. But I didn’t know at the time that I needed to take on a different role. I wasn’t just a mom anymore. I was an advocate.

But I was completely fine. I was FINE. I do remember saying that a lot.

Until about 12:30 AM. Nate had gone to get Fynn and take him home to sleep. I put Mia in the bassinet, walked into the bathroom, looked in the mirror, and it was like 5 months of grief came out all at once. I can’t tell you how long I cried. So much that my eyes were almost swollen shut.

I didn’t want anyone to know I was sad. It’s the other thing people don’t prepare you for – the shame in feeling a sense of grief over your living child. I kept all the lights off in my room and wrapped the ice from my water cup in a paper towel and put it on my eyes to reduce the swelling so the nurses wouldn’t know. Silly right?

The rest of the hospital stay included being yelled at by a doctor because I wanted to breastfeed and I didn’t understand this new polycythemia diagnosis. We found out about her heart defect. I had a group of wonderful nurses and lactation consultants who took my lead (the happy face I put on so they would all start talking like normal people) and started encouraging me instead of avoiding me. The polycythemia landed her in the NICU because her blood was turning to sludge. And then…the rest.

I’ve hesitated for a long time in writing this birth story because it’s not pretty. It was not a week of unicorns and rainbows and support. It was raw and wrong. It was full of misunderstandings and pain.

But here it is. And this is why I advocate for more information. This is why I post about Mia. This is why I say yes to anyone who wants to “send someone with a diagnosis my way.” Because this birth story is not Mia’s story. It’s just the beginning, and the beginning was hard.

But then Mia came home. That’s her real birth story. When the little girl with Down syndrome became just a little girl. But you all know that story already.

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“Every person needs to take one day away. A day in which one consciously separates the past from the future. Jobs, family, employers, and friends can exist one day without any one of us, and if our egos permit us to confess, they could exist eternally in our absence. Each person deserves a day away in which no problems are confronted, no solutions searched for. Each of us needs to withdraw from the cares which will not withdraw from us.” ― Maya Angelou

Tomorrow Mia starts 4K and Fynn starts 2nd (how did that happen??). And aside from buying Mia school supplies and taking her to meet and greets, I’ve barely thought about it. After two years of logistics and getting kids in the right spot and then somehow getting to work, I’m just looking forward to some kind of normal.

The truth is that over the course of almost five years, I’ve gone from being completely petrified to confident that Mia is going to be just fine at school. A lot of that has to do with the many amazing therapists and teachers who have been her guides and cheerleaders for her entire life. She’ll be amazing, I know it.

But you guys, I’m tired. Like I’ve reached a profound tiredness where one day bleeds into the other. Mia’s very kind daycare teacher, on Mia’s last day, told me how impressed she was at how I’m always positive and upbeat. It was a very sweet compliment, but my internal, snarky-self thought, “It’s the years of acting. I’m very good at pretending.”

And I am positive and I do believe everything is going to be fine and I love my kids and I love my job and I’m excited about things in life, but I’m exhausted. Do you remember in college, when the end of the semester hit and you went home for summer break and you slept for a week straight? That feeling. But instead of sleeping, imagine starting another semester the next day.

Part of me blames it on grieving, and those of you have grieved for a long time will know exactly what I’m talking about. First I grieved Mia’s diagnosis and then that grief just bled into grieving my marriage, and this feeling is what happens at the end.

And then part of it is just being a parent. I don’t think many parents don’t know this feeling. The feeling of just needing a nap…or several.

And of course there’s the guilt piled up on top of knowing deep down you need a very long break from your children. Of people needing from you. I think mothers specifically feel like their identities disappear in motherhood to other people’s needs.

This year I bought a subscription to the theater. Part of it was because I miss the theater. I love working for the orchestra, but my heart is in a theater. In plays and (sometimes) musicals. Shakespeare and Tennessee Williams and Arthur Miller and Henrik Ibsen and Tom Stoppard are just my people, and I miss it. But another part is that for 2-3 hours a few times a year, I’m going to sit by myself in a theater without anyone needing anything from me. I bought one subscription. One ticket. One seat.

Sometimes I think it’s hard for moms to admit they need it. They need time where they can do something completely for themselves. Maybe we’ve conditioned people to believe that if they don’t give every part of themselves to their children or to their work or significant other, then they are somehow selfish and horrible people. But over the past two years especially, I’ve realized that moms, myself included, have got to cut ourselves some slack. Facebook and Instagram and Pinterest are telling everyone to be perfect, but sometimes leave the stuff on the floor and the dishes in the sink and go to bed. Go read a book or watch a movie that doesn’t include a cartoon character. But to do something that does not have anything to do with another person, just themselves. To remember that person that is you separate from other people.

And maybe I’m writing this for me as much as for any other moms out there who feel the same way. I hope your Labor Day includes a little break for you too. And if it doesn’t, the kids go back to school tomorrow. And if you’re the mother of an infant or toddler, don’t clean up the house during nap time. You have my permission to eat ice cream and watch bad television or do whatever else makes you happy.

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Holland again.

“I have become a world traveler and discovered that it doesn’t matter where you land. What’s more important is what you make of your journey and how you see and enjoy the very special, the very lovely, things that Holland, or any land, has to offer.” Welcome to Holland, Pt. 2, Emily Pearl Kingsley

You’ve all read or heard of the first “Welcome to Holland” short essay? I wrote about it way back at the beginning. I wrote about how it just wasn’t me. And it still isn’t. I never felt like Down syndrome took me to Holland. After Mia was born, I still felt like I was on my way to the vicinity of Italy. I mean, maybe I was landing in Greece or something. Greece is pretty nice. Still in the Mediterranean at least, am I right? There’s Athens. Beaches. The Parthenon? I mean, it may not be everyone’s first choice for a vacation in Europe, but it’s definitely in the top five.

And then I got divorced, and my plane ended up in Kazakhstan. I don’t know anything about Kazakhstan. Feel free to Google. I couldn’t point to it on a map. Lost.

I dated my ex-husband throughout college and got married the summer after he graduated (I graduated the year before). It was supposed to happen. We were in love. Looking back, it was silly. We were babies. What did we know about anything? But we did what we were supposed to do. Got jobs, both went to graduate school, had a baby.

But then Mia was born and it was like someone had dismantled our future. Two “normal” kids. Two “normal” childhoods. They’d graduate from high school and then college, then empty-nesting, and then retirement. Like a map. Then it felt like someone took a big Sharpie to our map and just wrote, “No.”

And then I sort of started a new one. Over time, I felt like I was navigating the world pretty well. Navigating this new map, this new “normal.” Then someone took a big Sharpie to my new map and wrote, “No.”

Well, shit.
Now what?

Those four words pretty much sum up my last, nearly, two years. So for two years, I’ve been trying to figure out the “Now what?” part. Because that map is long gone, people.
And I’ll be honest with you, I have absolutely no idea. I have no idea what’s next. For those of you who know me, I’m a planner by nature. I love planning. And boy did I have a plan. I mean, two years ago, I could have told you the plan for the next 20 years of my life. And now, nothing.

It took a long time to let go of that other life. I still don’t think I’ve completely let it go. I think it will always haunt me a little, just like the little girl who Mia “was supposed to be” will haunt me.

It sounds a little reckless to say this, but I think I’ve decided to stop drawing maps. My long-term planning is on hold. At least for now.

For now, I’ll plan on fireworks. Parades. Blue moon ice cream. Toddler giggles. Baseball gloves. Whether I’m in Holland, Italy, Greece or Kazakhstan.

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A hot mess.

I just figured, if I’m going to be a mess, I might as well be a hot mess, right?” – Mindy Kaling

So usually for Mia’s birthday, I write a post about advocacy and Down syndrome and what I’ve learned and all the awesome things about her. And there are tons of awesome things about her. She’s amazing and I love her. And she makes the world a better place. Just the other day another mom told me that her child cannot stop talking about Mia. Since she is the embodiment of pure sunshine, I was not that surprised.

And I love motherhood, but I’ve been talking to a lot of moms lately about life with kids, the mid-30s, and how hard everything is, and I decided to celebrate today by being completely honest about something.

I’m a hot mess.

Between IEPs, struggles finding a daycare, being back in the office, general kids in school drama, and just being a mom, I’m one problem away from spontaneously combusting.

I really want to be positive, but I’m in this funk. This enormous funk. Like the funk of all funks. Gosh I love my kids so damn much. But being a mom is hard. It’s HARD.

And I look at social media and think, “What are they doing so right? How am I such a huge mess? Why is everything so damn hard?” But then I look at my own Facebook page with the cute videos of the kids and adorable, strategically staged pictures (meaning I make sure the dirty diaper I left on the floor is not in the shot), and I start to wonder what people think about me. I wonder if I put on a good show that I have it all together.

And I think we’re afraid of admitting it. We’re afraid of saying, “I want being a mom to be awesome, but some days, it’s just SO HARD.”

So for Mia’s birthday. My advocacy is this. Hey mom out there who is struggling, who is sad, who is working her butt off but feeling like she’s going nowhere. Who looks at social media and thinks everyone is doing so much better than her. I hear you. I see you. We’re in this together. I’ll be a hot mess with you.

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Let go.

“Let go or be dragged.” – Zen Proverb

My fellow horse-back riding friends will understand this completely. That moment when your horse spooks, you fall off, and you’re still holding the reins. You have two choices. You either let go of the reins and let the horse keep running or you hold on and try to stop it. And if you hold on, you are going to be dragged. Because that horse isn’t stopping.

Acceptance is a process. When Mia was just a tiny baby, I thought about that other baby a lot. The one I was “supposed” to have. I thought about what she would have looked like, what milestones she would have been achieving, when she would have said “mommy” for the first time. She was sort of this ghost who followed me around all day, reminding me of what it all was supposed to be like. I let myself be dragged for a good long while, holding on to something that was just never going to be.

I don’t think I could pinpoint the moment when I finally let her go. I know she pops up every now and again. When I have to go to IEP meetings or when I notice the delays when she’s with children her age. But instead of spending the rest of the day upset about what was “supposed” to be, I just wave her off. I have Mia, and she is exactly who I am supposed to have in my life. And I am exactly who she is supposed to have in hers. It’s just as it should be.

But damn is it hard to let go of what was supposed to be. I remember those early days well. I put on a brave face, but I was scared, terrified, petrified. The only thing I wanted was for us to all be “normal.” I wanted it so much that I was white-knuckling those reins as if I could do something about it. But I couldn’t.

And isn’t that how it is in so many areas of our lives? I feel like I’m white-knuckling the reins of everything lately. I’m holding on to some kind of fantasy of perfect or ideal or just normal. And I’ve said it before. Life is never going to be “normal” so why can’t I just let it go?

Because being out of control is terrifying and I want to hold on to what I think it should be and control the outcome of everything. But I really don’t want to be dragged anymore. Eventually, I’ll lose my grip anyways and be in the same spot, only bloodier.

For me, Mia is the perfect example of how everything turns out “all right” in the end. I put “all right” in quotes because is it perfect? No. Is it hard? Yes. Are there days when I think I just can’t do this? Yes. But 99 percent of the time, all I can think about is how lucky I am and how awesome she is and how I am so deeply in love with this little girl that I can barely stand it. While I was letting myself be dragged three years ago, I would have never expected that if I had just let go and accepted my reality, I would be in this place right now.

“Let go or be dragged.”

Time to start letting go of the things I can’t control. It will all be “all right,” whatever that means.

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To tilt.

“What a pair we make, huh? Both trying to hide who we are, both unable to do so. Your men love you. If I knew nothing else about you, that would be enough. But you also tilt when you should withdraw, and that is knightly, too.” Prince Edward, A Knight’s Tale

So do you tilt or do you withdraw? I’ve really started thinking about which one I do most often. So do I tilt or do I withdraw? Both. Ironically, I withdraw when the challenge disappears, but the bigger the challenge, the harder the circumstances, the worse the possible outcomes, I tilt. I think the fact is that I always tilt toward possible heartbreak, always hoping that I win this time around.

And sometimes I do. With Mia, I feel like I’ve won. Instead of withdrawing, protecting my heart, and expecting less, I tilted right toward the heartbreak. I knew that it might be out there, the tremendous heartbreak of it, but I couldn’t help myself. I ran right at it with no concern of how badly it might hurt. I didn’t feel like I had a choice. In reality, I’m still running at it.

But sometimes, I tilt toward heartbreak and lose. And usually the loss is extreme.

I can imagine myself now, lying in the dirt, wondering how I got there. The pain from the lance still searing my chest.

But then what? What should I do when that happens? Quit? Give up? Stop tilting? Do I protect my heart? What do I do in the face of a broken heart?

I plan to pick myself back up, dust off the dirt, pick up my lance, reassemble the tiny pieces of my heart, and I’m going to go looking in a different direction. I plan to find the biggest and most dangerous chance for heartbreak, and I’m going to tilt right at it.

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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.

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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.

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