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.

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.

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.

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.

Yep.

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

Coloring

Mia Colors

Dancing

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.

Chapter 6.

“Life shrinks or expands in proportion to one’s courage.” ― Anaïs Nin

I’m not a naturally courageous person. I’ll tell you what I am. I’m the truest definition of an introvert, and my Myers Briggs test tells me I’m an INFJ. Feel free to look it up. Let’s just say I spend a lot of time living in my head. So it takes a lot for me to tell you all that I’m on Chapter 6. I’ve started a novel, and I’m on Chapter 6. Now, you’re probably thinking that it’s a novel about Down syndrome, but it’s not. I just don’t think I’m ready to go there yet. I still feel very new to this journey, and I want to get a few more years under my belt before I even consider that possibility.

But I’m on Chapter 6. See, the thing is that I’ve never been on Chapter 6 before. I’ve started so many novels in my life, and I always stop right before the story starts to take shape. I usually look back through the words and think, “This is the worst piece of crap novel ever written.” Then I give up. It’s much easier to give up.

But you see, I’m on Chapter 6. The story has already taken shape, and instead of stopping and rereading and deeming it an unworthy piece of crap, I’m still writing. I’m writing it in my head, on extra pieces of paper, on my computer. I’m still writing.

When I started this blog after Mia was born, it really was to just get all of these feelings that were in my head out in some way, and if someone read it along the way, then so be it. Honestly, when anyone brings up this blog to me, I still feel a little embarrassed. I feel that way because I imagine writing this and sending it out into the abyss. I still forget that people actually read this sometimes.

I really liked writing for public relations, but I think I liked it because I’m not a naturally courageous person. There’s no by line in public relations writing, and I get to remain anonymous behind words that are not really my own. Sure, I figured out what to write and maybe crafted a message, but I could easily say, “This isn’t me. This is for someone else. I’m writing their words for them.” There was something very anonymous and comfortable about P.R. for me. That’s probably why I still do it here and there.

Just under a year after Mia was born, a friend of mine who happens to be a newspaper editor e-mailed me to see if I would review a book by a mother who wrote about her son with Down syndrome. I’ll be honest, my first instinct was to run. I’d have to put myself out there and write something that more than my handful of friends online would read. I’d have to put my name on it. I was terrified. I said yes, but I was terrified. After I’d written it, and he emailed to tell me when it would be in the paper, for a moment I thought about changing my name and possibly moving to a new state. Of course, it all turned out just fine, great in fact, and I’ve done more reviews, though I still get a queasy feeling in the pit of my stomach when I hand them in.

I’m just not a very courageous person. But you see, I’m on Chapter 6.

Mia has inspired me in so many ways. Not just because she has to work harder than everyone else to reach the same milestones, but because being her mother has made me rethink every single part of my life, and it’s made me think about big, scary things that I’ve never had to think about. I’ve had to learn to be brave. I’ve had to learn to stand up for her and be her advocate. I’ve had to learn to be brave because I’m her example. She’s going to look at me as her role model as she grows. How can I show her how to be brave in the face of the harshest challenges when I’m not even brave enough to put words on a sheet of paper? The truth is that I have to be brave. I have to have courage because she needs me to have courage.

So guess what friends? I’m on Chapter 6, and right now it may be the worst piece of crap novel ever written, but giving up doesn’t feel like that great of an idea anymore.

Potty training.

“Rivers know this: there is no hurry. We shall get there some day.” ― A.A. Milne, Winnie-the-Pooh

The quote above may be a little “on the nose” when discussing potty training, but there you go.

So this week we’ve started potty training Mia. I am happy to say we have it all figured out and she’s going on her own.

Ha! No. Just no. Let’s just say that it is quite interesting potty training a non-verbal child who may or may not have any idea what I’m asking her to do. I literally put her on the potty every 30-45 minutes, and if she goes, I jump up and down and give her high fives, hugs, fist bumps, and she pretty much looks at me like I’ve gone a little crazy. I walk her over to the sticker chart and she puts a sticker on it, which I’m pretty sure she believes is a completely separate activity.

So why do I bother? She’ll get there eventually, right? Why not wait until she’s three or four? I decided to do this right now because she is showing signs of readiness. I’m also doing it now because I was waiting for all the wrong reasons. Let’s just say that for all of my “no limits” talk, there are still times when I come from a place of “she can’t do it.”

We actually just got back from a two week road trip to Minnesota, South Dakota, and finally Colorado. It was a really great trip. The kids did surprisingly well in the car, in restaurants, and at activities.

One afternoon, we took the two kids for a walk around the lake that was near the condo where we were staying, and at the end of the walk, there was a park. Fynn, of course, ran off to find some friends, and we walked Mia to the toddler section. She played there for some time before she started making her way to the biggest slide on the playground.

I could feel myself getting a little anxious. She’s not quite three! She’s so small! She has low tone! She CAN’T do it! I could hear it all in my head. I could see her whipping down the slide, screaming in terror, and banging her little head on the slide. Panic. Thankfully, Nate was there and did the dutiful father thing and walked her to the top of the slide and let her go for it. Granted the first couple of times I sort of “caught her” until she slapped my hand away. Then, she did it all by herself. No blood, no screaming, no tears. Only happy giggles.

It occurred to me that maybe I was the one actually holding her back. She can do it. She really can.

Potty training. I decided that I can’t let my own anxiety of this not working get in the way of letting her try. Sure, she may not be ready, but I can’t determine that without giving it a try. As long as she’s happy and willing and I can keep my patience, why can’t we give it a go? The truth is that Mia is going to do it when she’s ready anyways, no matter how many times I take her there.

So here we go! Day three. Wish us luck!

Talking.

“A wonderful fact to reflect upon, that every human creature is constituted to be that profound secret and mystery to every other.” ― Charles Dickens

Talking. At Mia’s last IFSP meeting, the social worker asked if Mia was talking yet. I sort of sat there for a moment in silence. Yes, she does have a few words – dada, book, bubbles, all done, yes, no, hi, and she does sign milk, more, shoes, and help, but is she “talking?”

Some of you probably know that Fynn was a late talker. Really late. Like so late that he had to have speech therapy and then occupational therapy once we realized that his late talking might have more to do with a different problem than his not understanding how to talk.

It was hard. I think that many people didn’t really realize how hard it was when Fynn wasn’t talking. It’s heartbreaking to watch a child desperate to communicate with you melt down into temper tantrums because he isn’t being understood. You wait for that magical moment when you know what they are thinking and it never comes. I imagined friends and strangers attributing his temper tantrums to my own bad parenting. Sometimes people would suggest talking to him or giving him choices, and I sort of laughed sardonically on the inside. Talk to him. That’s all I wanted to do.

But instead I felt like I was talking at him and getting nothing in return. I often described it as living inside of a Beckett play. For my non-Lit friends, he’s an absurdest writer, and in his work one character might say something to another and the other character might respond with a complete non-sequitur. That was my life. We weren’t communicating with each other.

Ultimately, we settled into a sensory processing disorder diagnosis, got him the help he needed and the rest is history. I believe I even uttered, “He never stops talking,” to Nate at least once this week.

“Is she talking yet?” Having been down this path once before, I said shakily, “She’s not really talking, but she’s communicating. I appreciate the difference now.” Mia may not be speaking English, but Mia is communicating in so many ways.

Mia communicates love with a kiss and a hug. She shows her love for her brother by patting his hair and watching his bed in the morning, so she can wave to him when he wakes up. Mia asks me to read her a book by handing it to me and then raising her arms so I scoop her into my lap. Mia shows me how she wants me to play with her by demonstrating first. Mia communicates her hunger by pushing the chair back from the table. She shows me which song she wants to sing by doing the arm movements. She even tells her therapists she’s done with therapy by escorting them to the door and waving bye bye (although she does it after only 15 minutes). Mia plays pretend with her toys. Her dolls “talk” to each other through her sweet babbling.

Mia doesn’t talk, but Mia is a master communicator. Her temper tantrums are fewer because I decided to understand her instead of making her understand me. Although, lately I’ve been hoping to frustrate her just a bit by pretending I don’t understand, hoping to get her to speak just a few words. She’s on to me now so she just tries a different tactic, which usually includes a big hug. She knows how to make me do exactly what she wants.

So does Mia talk? No, not yet, but I know she will. For now we can speak her language.

In the meantime, the little thoughts inside her head are a mystery to me. I suppose she can keep her secrets for now. I know she’ll tell me someday.

The bus.

“A bend in the road is not the end of the road…Unless you fail to make the turn.”
― Helen Keller

I cannot even tell you how many times I’ve heard this platitude. I’ve said it. I think we’ve all said it or thought it. “I don’t care if it’s a boy or a girl, as long as it’s healthy.” After Mia was born, the platitude took on an entirely different meaning for me.

The other day, I heard these words spoken again. Not by anyone I know, but by a stranger. Out of nowhere I felt it – the disability bus. It happens from time to time. Ninety-nine percent of the time, everything is fine, then out of nowhere, that damn bus runs me over. It sucks all the hope away, and then I just feel the weight of it – disability.

I think those particular words hurt so much because it sets health above all else as the pinnacle of happiness, and that’s a pinnacle that my daughter will never achieve. Mia is healthy, but health is relative. She’s healthy with a hole in her heart, hypothyroidism (that will only get worse as she ages), low muscle tone, pronated ankles, poor eyesight, and a third 21st chromosome that will constantly affect her in every way. I realize all of these things aren’t horrible and she’s doing great, but she’s never going to achieve perfect health.

Of course health is important. I’m always working to achieve better health. It’s the constant mantra in our culture from buying organic food to the ideal exercise to the constant barrage of “what will kill you” in the media. We can’t escape it.

But after Mia was born, “just as long as it’s healthy” felt like such a weird sentiment to me. What does that even mean? Just as long as it’s healthy, what? You’ll be happy? You won’t worry? Your baby will be fine? A giant crevice won’t open in the earth and swallow you whole? What are you going to do if the baby is unhealthy? Are you going to give it back?

I realize the sentiment is really that we are hoping and praying for a healthy child, and there is nothing wrong with that, of course. No one wants their baby to suffer in any way. Everyone wants the perfect birth experience with no NICU stays and the perfectly healthy baby. And there is not a thing wrong with that. I even hoped and prayed for Mia’s health even if she had an extra chromosome.

And usually those words don’t bother me because I understand the sentiment. I hear it and move on. But it’s just that damn bus. The one that reminds me that she has to work harder than everyone else. It’s the reminder that she will be constantly judged by her diagnosis, and that our society has already determined what she is capable of. It just sucks. I hate that bus.

But thankfully that bus doesn’t stick around long. The weight is less and less lately. It shows up, knocks me down for hours, not days, because I realize that while disability is a part of our life, it doesn’t define our life. I get to decide how long it affects me.

I can either let the bus run me over or step out of the damn way.

And who has time for a pity party when you have these two awesome people to look after?

Mia1

Fynn 10

But what if…

“When one door of happiness closes, another opens; but often we look so long at the closed door that we do not see the one which has been opened for us.” ― Helen Keller

Happy St. Patrick’s Day. Also Happy Down Syndrome Awareness Week! This year I’m feeling a little tapped out on how to really educate about Down syndrome. Every day I come across some new ignorant comment or thinly veiled type of racism against people with Down syndrome masked in “their best interest” or “humor.” Unfortunately, three years ago, that was me. I looked at people with Down syndrome with pity in my eyes and sadness for the burden that it must be for their family. Three years ago, at this time, I was blissfully unaware that I would be the future mom of one of those individuals that I pitied so much. I was blissfully unaware of my own ignorance. And then when I found out that I would be the mom of a child with Down syndrome, the fear came. Also the joy came, but that came much later.

Over the last year, I’ve been thinking of those fears. It’s so strange what popped into my mind when I thought about this diagnosis. When the health problems seemed to be less of an issue, the fears started being about every day life. Instead of explaining what Down syndrome means to me this year, I thought I would just show you all of my fears up close.

What if she has no personality?
Mia Selfies

What if she is sad all of the time?
Mia Laughing

What if she and Fynn never play together?
Mia and Fynn instruments

What if she just never experiences the joy of childhood?
Mia Pool

Mia Leaves

What if she never walks?
Mia Walking Outside

What if she isn’t curious?
Mia Undoing the Baby Gate

What if she isn’t interested in playing with toys?
Mia Music

Mia Little People

Mia Plays

What if she never reads?
Mia Reads

What if she’s not pretty?
Mia Green Shirt

The thing about fear is that sometimes it’s based on truth and sometimes it’s based on a lack of understanding. I still have plenty of fears for Mia as she enters school and then becomes an adult. I have fears that will never go away, but every single day, I am reminded that I’m not the only one fighting for a better world for my daughter. I realize that every single day I have to throw my stone in the water and hope that the ripples keep going. If we all keep throwing in our stones, think of all those ripples.

This week, Ruby’s Rainbow is finishing up their 3-21 Pledge drive. Ruby’s Rainbow gives scholarships to adults with Down syndrome who want to pursue post-secondary education. They’ve raised $100,000 so far. It’s amazing. I’m putting the link in this blog in case you want to donate towards the cause. https://www.rubysrainbow.org/321-pledge/

What if Mia gets to go to college? Now THAT is a big dream. It’s a good thing we’ve turned into big dreamers in this house.

Mia Dream Big