Little Reminders

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Everyone tells you not to compare.

If you have a child with special needs, you tend to compare that child’s progress to her siblings. Because as much as people tell you not to compare, you can’t turn your brain to the *off* position. If you could turn your brain off, you’d stop thinking about the Halloween candy in the kitchen. Or you’d stop thinking about the phone call you have to make by Friday. Or you’d stop thinking about the next chapter in your life.

But you can’t just *stop* thinking. Your brain turns and moves, turns and moves–as much as you might want to quiet your thoughts. I’ve actually tried meditation many times, and I’ve gotten decently good at it. But even if I sit down to quiet my thoughts for 20 minutes, only 3 minutes of that will be successful. For the other 17 minutes, my mind is still on overdrive.

So if people tell me not to compare my children, it’s impossible because I can’t just shut down my thoughts.

But I want to explain that comparison isn’t a bad thing!

I used to beat myself up about it. I would think: Hmmm…Emmy’s not rolling over yet. I’m pretty sure Charlotte was rolling over by now.

Or I used to think: Was Charlotte able to cross midline this early? Emmy isn’t doing it yet. (Midline = a term I never thought I would have to learn. Now, I know it well.)

And when people would yell at me to stop comparing, I would criticize myself for doing so. What’s wrong with me? Why can’t I stop?! Yet, I was unable. So let me rephrase…

I was thinking.

It’s ok to think, right? Everybody does it. And it doesn’t sound as bad as “comparing.”

When I was thinking about Emmy’s progress in relation to Charlotte, I was simply *thinking.* I love, love, love, love, love Emmy dearly. I think she is amazing and smart and funny and gorgeous and sweet. I feel the same about Charlotte and now, Theo. But my kids are different. They do things on different schedules. They have different personalities. They progress differently. It’s not that one who moves more quickly is better. It’s that one who moves more quickly is different.

When people use the term “compare,” it sounds as though one is better than the other. That’s not true. They’re just different.

And I think it’s ok to observe differences. I think parents should give themselves permission to see the ways in which their children are unique.

There is a parent who has twins with Williams syndrome. She commented that she has a hard time not comparing them. Can you even imagine having twins and being told not to compare? Isn’t that the most impossible task in the world? I mean, how do you NOT compare?

But please understand that these comparisons aren’t negative. They’re just thoughts…observations. As human beings, we have thoughts. And, unless we’re going to meditate 24-7, it’s impossible to shut our brains off.

Now, of course, if you notice that your comparisons are turning negative, that’s a different story. “She’s not crossing midline yet” is different from “Why can’t she cross midline yet when her brother did it so perfectly at 1 month old?” Of course, that’s totally different. And, yes, that would be negative.

But most parents I know are proud of even the smallest accomplishment. Their comparisons aren’t negative. Their comparisons don’t affect their LOVE. These are just thoughts…passing thoughts. Love is constant.

So if you have one of those passing thoughts, don’t beat yourself up (as I did for so long). It’s ok to see differences. They’re just little reminders that your children are unique and special in their own ways.

As you can see, my girls dressed very differently for Halloween. Charlotte knew for months that she wanted to be princess Elsa. That’s it–do not pass go. Emmy, on the other hand, isn’t into princesses. She has always been obsessed with monsters. First, our red, furry friend, Elmo. And now, blue Sulley from Monsters Inc.

I love that she loves monsters!! It’s different. It’s cute. It shows a side to her personality–a fun and daring side. She’s rarely afraid. In fact, when Charlotte didn’t want to stick her hand in the “eyeball” soup at Halloween, Emmy dove right in–grabbing prizes for both of them.

Of course I had the passing thought: It’s funny that Emmy is so into monsters, while Charlotte never was.

But it’s just that…a thought.

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I Love to See You Laugh

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We were about to walk out the door on our way to school, when Charlotte asked, “Mom, have you ever laughed?”

I froze.

She wasn’t being sarcastic. She was asking me earnestly if I ever laughed. I thought, Wow my child hasn’t seen me laugh in the 5 years she’s been alive?? Something is wrong here.

Her words resonated in my head throughout the day, as I turned her question over and over in my mind. Was I really walking around in a state of misery 24-7? I certainly didn’t feel that way…

Then I realized what she was asking. She wasn’t asking if I was miserable all of the time. She wasn’t asking about my smiles or my chuckles (many of which I give throughout the day). She was asking about the belly laughs.

Can you picture the belly laugh of a child? It is the cutest thing ever! The first thing you notice is the grinning little white teeth and gums. Then you hear the sound of hearty laughter as they throw their head back. And then they often bend over, clutching their sides.

And what makes them laugh like this?

Usually the word “poop.”

That’s all you have to say to a child: “Poopy poop poop.” And you are gifted with the most incredible belly laugh, one that rings in your ears just thinking about it.

At one point in our lives, that belly laugh was instantaneous. As a child, you could access it at a moment’s notice. But as we get older, that belly laugh is tougher to find. Perhaps the things that once made us laugh aren’t funny anymore. Or perhaps there are fewer things to laugh about.

It was 6 months ago that Charlotte asked me if I’ve ever laughed and, ever since, I’ve tried to let that belly laugh back in. I know she sees my smiles and my chuckles. But I want to show her that I can belly laugh too. I want to show her that I’m having fun with life (even if I’m often stressing about many aspects of it…).

I thought back to my own life and two people I love to see belly laugh — my parents. There’s nothing better than my dad getting red in the face and laughing so hard that he cries. I don’t want my parents to worry or stress. I love to see them happy — to see them truly experiencing lighthearted joy.

Some of the most wonderful belly laughs I’ve ever seen came from my grandmother, who we lost in August. She used to say, “I love to laugh!” And it was true. Even in her 80’s, she allowed herself to go to that silly place. She didn’t constantly mull over the hardships of life and say “Woe is me.” Just the opposite. Even when she had cancer, she laughed and laughed and laughed.

I want to make an earnest effort each day to tap into my belly laugh, especially around the kids. I want them to see their mom having fun with life. I don’t want to teach them that life is difficult and grueling and tough. I want them to see the lighthearted side of things.

And something else… I don’t want my kids to lose their ability to access that genuine belly laugh. But if they see that I’ve lost it, why wouldn’t they just follow in my footsteps?

The tricky part is that it’s hard for me to laugh at “Poopy poop poop” jokes. But we’ve started to move out of that territory a little bit. Emmy now puts things on her head at the dinner table, and there’s something very funny about her saying, “Napkin on my head!”

The good news is that my efforts haven’t gone unnoticed! We were in the car yesterday when Charlotte said something silly from the backseat, and I genuinely belly laughed.

Her response?

“I love to see you laugh.”

The Kindness of Others

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Yesterday, as Emmy was working her way down the steps at school, a parent held out her hand.

“Want some help?”

Emmy gladly accepted the hand, and the two of them walked slowly down the steps together. I don’t know this woman. I’ve seen her around, but we hadn’t officially met until yesterday. Yet she saw that Emmy was a bit slower on the steps, and she was eager to extend a hand.

And when I came to pick up Emmy at school the other day, a little girl saw me and said, “Emmy, your mom is here!” But she didn’t stop there. She put a hand on Emmy’s back and gently guided her through the sea of children. This little girl of about four years old led my daughter to me.

Because my daughter has special needs, I see something that others may not see. I see people who show a level of kindness that goes above and beyond what is expected.

Sure, we all say “hi” to each other as we go about the hustle-and-bustle of our daily lives. We offer a quick smile or a wave. We hold the door for each other. We say “Excuse me” and “Oops. I’m sorry.” We’re in our own little worlds. It’s how we live, and it’s what we’re used to.

But now I also see the people who drop everything to help someone with special needs. When that happens, there’s an incredible kindness that comes through. And there’s a softening. Our crisp, sharp world becomes fuzzy around the edges.

As I stood waiting for Emmy to work her way down the steps holding a woman’s hand…

And as I stood waiting for a little girl to guide her though the crowd…

Time stood still. Everything became softer. 

I wonder about people like this. Where does this kindness come from? Do they have a sibling with special needs? Do they work with people who have special needs? Did their parents teach them to be kind to people with special needs? Or are they just born this way?

Before Emmy was diagnosed, I didn’t have this trait. Of course, I was perfectly pleasant towards people with special needs. It’s not like I was cruel or anything. But I didn’t have the stop-everything-and-help trait. I didn’t know anyone with special needs and, actually, I didn’t think much about it. I was very much in my own little world.

I’d say most people are just like I was. They offer Emmy a quick smile. Or they might look quizzically at her, perhaps thinking, “What’s wrong?” Or they don’t even notice her at all.

But then there are these people who stop EVERYTHING and extend a hand. This woman’s own daughter was at the bottom of the stairs already. She could have easily raced down the stairs, offered me a brisk “Hello,” and marched towards her car — already thinking about what to make for dinner. I wouldn’t have faulted her a bit. It’s what everyone does. Hey, I’m busy too, so I get it!

But, rather, she stopped. And she extended a hand.

When I see the kindness come through in children is when it really gets me choked up. When I see kids holding Emmy’s hand to help her along. Or when I see kids try and pick her up to help put her on a tricycle. Or even when kids stop to say, “Hi Emmy!” Those things make her day. And they make mine too. It makes me feel like we’re going positive places in this world. I applaud the parents who are able to teach this kindness to their children. I think it will make them better people, for sure.

I already see how Charlotte has blossomed because of her sister. She is so kind and so helpful. When she takes Emmy’s hand, that softness happens. Just writing about it, I can actually feel it.

People with special needs deserve this kindness. They don’t deserve hurtful words and teasing. I see how Emmy has completely changed my life. Her incredible spirit has softened me. And she has shown me how to really stop and see these little moments of softness in an otherwise fast-paced world.

The Passing of Time

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I’m so aware of the passing of time right now. Charlotte turned 5 years old  on May 21. Last year, we were celebrating her birthday with my mom and my aunt at home, when I got the call from my husband who was in the hospital with our other little girl–they were going to try and take Emmy off life support in about an hour. She had been on life support for a week and, on Charlotte’s birthday, they were going to see if Emmy’s heart could beat on its own. I was terrified, nervous, and excited. I felt like Emmy had come so far already, and I had confidence that she could pull through. But I was also scared that this wouldn’t go well. Either way, it had to be done. She was starting to bleed from the life support machine.

I gave Charlotte birthday wishes, hugs, and kisses, and hopped in the car. The hospital was about an hour away, so I would hopefully be able to get there just in time. I don’t think my own heart has ever beat as rapidly as it did on that drive. I kept talking to Emmy in my head: “You can do it! Come on, Emmy!”

Right before I crossed the bridge to the hospital, a song came on the radio. It’s called “Keep Your Head Up” by Ben Howard. I’d heard this song a couple times and always liked it, but this time the lyrics affected me differently. I flew over the bridge with the chorus in my ears: “Keep your head up. Keep your heart strong.” I cranked up the volume and, with tears running down my cheeks, sang along: “Keep your head up. Keep your heart strong.” I kept singing louder and louder, willing Emmy to hear me.

I got to the hospital just before she was taken off life support, and it was such a relief when the doctor came to get us in the waiting room. She said Emmy had transitioned off of life support nicely, and her heart was beating on its own!

First we felt joy and relief! Then the exhaustion of the prior week came washing over me. Emmy had gone in for heart surgery on May 16 and, after two cardiac arrests and a crash onto life support, we had been living on pins and needles. We were also trying to make things as “normal” as possible for Charlotte–keeping our promise to celebrate her birthday; trying to devote as much time to her as possible. That day alone, I had made several trips to the hospital. I brought Charlotte in to celebrate with Daddy in the waiting room. Then went back home. Then drove back when Emmy was ready to come off of life support. Dan and I were beyond tired–physically and emotionally–and it would be another few weeks before we were able to bring Emmy home…

And despite all of our hard work last year, Charlotte’s birthday was still kind of a disaster. I think that, emotionally, she is very tuned into us. She could feel that things weren’t right, even though we tried to make the day special. She was a trooper about celebrating her birthday in the hospital’s waiting room, but she also sensed that this wasn’t how birthdays usually go.

This year was much different–thankfully. She had an absolutely awesome birthday, and Emmy was there to celebrate with her.

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Looking at 5 year old Charlotte, I keep thinking of the little baby we met in the hospital in 2009. How quickly it all goes by! It makes me want to freeze time.

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Ironically, during the newborn stage, I wanted time to speed up. We were so tired! We didn’t understand why our baby didn’t sleep. No one told me about that part. Ok, they did, but I apparently didn’t listen. 😉 Now I’d like to go back to that day we met her and learn to take it slow.

I’m constantly caught between focusing on the future and settling into the present. This morning, Emmy was saying funny things at the breakfast table, which is typical for her. She loves to make people laugh. And I found myself thinking, “I can’t WAIT until she’s 10 years old!”

I mean, now the funny things she says are short and sweet: “My birthday too! Need presents! Emmy need presents too!” I can only imagine what a ham she’s going to be as she grows older. But then again…when she’s 10, I’ll be longing to recapture these toddler years.

So here I am at 36 weeks pregnant.

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And on the one hand, I am SO ready! I want to meet this baby, and also I’d like to fast forward through the uncomfortable feelings of the next few weeks (heaviness, lethargy, etc). I’m also nervous about my uterine window holding up and my third C-section. I’ve already been to Labor and Delivery twice over the past few weeks! Once I gave myself an electric shock (by putting my finger in a socket, which was beyond dumb), and the second time I was bleeding (but I’m ok now). So let’s get this show on the road! I’m ready for baby.

Then again…this will probably be my last pregnancy. I really need to try and appreciate these last few weeks. When I let fear and anticipation get the better of me, I live in the future. I want to just end up on the *other* side of everything. I have trouble with the right now.

Sometimes it’s ok to focus on the other side, like imagining Emmy off of life support. That’s an experience that I don’t want to relive.

Other times, it’s better to settle into the present. Time passes whether we appreciate these moments or not. Makes more sense to appreciate them. Hope you enjoy today!

Pamper Yourself

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Some people have yoga. Others have meditation. I have the mall.

No, not them all. THE MALL. 🙂

I haven’t been to the mall in a while. I mean, I haven’t been to the mall by myself in a while. Sure, we run into the Lego store, chase the kids around a bit, have a quick dinner, and head home. We’ve done that a couple times. That’s not relaxing.

But there’s something that happens when I go into a mall alone. It’s a very particular mall, actually — the one I used to go to as a young girl. The elevator music has a calming effect, the perfume-y smell is enchanting, and the tile under my feet feels familiar. I used to go to this mall a lot as a kid, and it brings me right back to childhood. My cares melt away. I’m a kid again.

I haven’t been to this mall in a long time, though. First of all, I don’t have a ton of alone time to go wandering around malls aimlessly. And second of all, I think about the money aspect. It’s not exactly like I’m independently wealthy. Third, I have 10,000 other things to do with my time — things that are seemingly more productive like cooking, cleaning, working on a project, procrastinating…important things.

Well, I’ve been craving a vacation. The heavy winter has gotten me down, and I’m turning into a shut-in.

Out of the blue, the mall beckoned me with its promises of pampering.

But, no, I argued. I can’t waste time at the mall. I have things to do.

Yes, that’s true. But when are we allowed to pamper ourselves? We jump from one thing to the next and find ourselves way down at the bottom of the totem pole. It’s self-inflicted though. If I told my husband that I wanted to go to the mall alone, he’d usher me right out the door. It’s not that other people are holding me back. It’s that I’m holding myself back. I think of all the practical things that I should be doing, and wandering around the mall with zero purpose is anything but practical. I also feel guilty taking care of myself. How can I possibly spend time on myself when I have other people to take care of?

I watch The Real Housewives (because who can look away), and I see how these people pamper themselves. The hair, the nails, the outfits. Who has time for that? I just reason that their luxuries come from being so rich. Of course they have time to do their nails. Then again, I’m sure there are rich people that don’t take care of themselves like these ladies do…

How much time would it take me to put on makeup in the morning or pick out a cute outfit or do my hair? I actually haven’t gotten a haircut in almost a year for two reasons. One is that I have better things to do than sit in a chair for an hour (so I say). And the next is more practical. I have curly hair, and other girls with curly hair will backup the fact that things can often turn disastrous when someone is cutting into your locks. I’ve had some really weird, eccentric cuts done in a salon because it’s fun to experiment with my hair. So I try and stay away.

But then I’m at the point where my hair is a frizz-ball, my face is screaming for moisturizer, and my clothes are wrinkled. Is this really what it means to be busy? Or is this something else? LIKE NOT CARING ABOUT ONE’S SELF?? (Didn’t I learn anything from this post last year? https://williamssyndromesmile.com/2013/07/15/self-care/)

Enough, I say!! It’s time that I put on my Real Housewives facade and pamper myself.

So, for the first time in a long time, I went to the mall alone. Just me and my thoughts. I took my time eating lunch. I walked into all the stores — up and down the aisles until my feet hurt. I bought some body lotion for my super dry skin. And I just let myself be. I tried not to judge if this was a proper use of my time. I just let myself enjoy it for what it was — a day of pampering.

And, as I drove home, I made the bold move of calling a salon to see if they would take me and my frizzy hair. They had an opening! Funnily enough, getting my haircut wasn’t the nightmarish time-waster that I imagined. It took a half hour and was easy as pie. The hairstylist also happened to be a curly specialist, so I lucked out.

Because I took a little time to do some pampering, I feel completely amazing. That’s all it took. Just a few hours of wandering around a mall plus a haircut, and suddenly I’m rejuvenated for weeks. I didn’t have to spend David Foster’s money (Real Housewives reference) to get to this point. It cost me a few hours and a couple bucks. Totally reasonable.

I think everyone needs to waste time on his or herself every once in a while. And I don’t think that sitting in front of the tv like a zombie or playing on one’s phone counts. I mean really, foolishly wasting time doing something that you wouldn’t normally do — preferably outside of the house. Just waste time for a day and don’t judge yourself. A little pampering goes a long way.

To my husband: This goes both ways, you know? I want you to tell me how you’re going to waste time on yourself one day this weekend. No judgement or guilt allowed. Just some good, solid pampering.

Tradition

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My husband is really into tradition. I mean, REALLY into tradition. Actually, the very first post I wrote was about how he buys green bagels every St. Patty’s Day: https://williamssyndromesmile.com/2013/03/17/green-bagel-morning/

He doesn’t just keep old traditions alive, though. He also spontaneously creates new ones! I was heading home with the kids when he called to say that he put the holiday lights on the house and wanted Charlotte and Emmy to turn them on when we arrived.

“It will be a tradition!” he declared.

I love that Dan doesn’t live by the same imaginary rule book that I have in my head. My rule book says that I preserve the traditions that were handed down to me, but I don’t create new ones. Who am I to create a tradition? Those things were carefully thought out by my ancestors! But Dan has no qualms about creating a tradition TODAY.

And I’m ashamed to say that I kind of brush them off (sorry, babe). Traditions are not as weighty for me. I have a few precious traditions surrounding Christmas that remind me of childhood but, other than those, I don’t really think about traditions for the rest of the year.

Over the weekend, I found myself really appreciating the fact that Dan keeps traditions alive when we got the tree and decorated it. And as the kids put ornaments on the tree, I was so aware of how this tradition forces you to be present. It forces you to put down the phone, look at every ornament, tell stories about the ornaments, find the perfect branch, take photos to capture the moment, admire how your daughter is so careful with the precious ornaments when just last year she would’ve been the opposite, notice how your daughter carefully stands on the stool to reach the top branches, and realize how much taller she is than the year before. When you’re decorating the tree, you are forced to be in the moment.

How many times do I swear I’ll appreciate every moment–and then still let all of them pass me by?

And how many times do I swear I will PUT DOWN MY PHONE…and then will see it calling to me from the table?

“Put it down, woman!” I want to shout. “Put it down!” Because when I’m looking at my phone, I am anywhere but in the moment.

I think it doesn’t matter so much when I’m in the check-out at the grocery store and the person in front of me has 1,000 bags of candy to ring up, and I am just passing the time by looking at my phone. I think it DOES matter a lot when my kids need my undivided attention.

On Saturday, I was at a kids’ gym with Emmy, waiting for her class to start. I was watching the previous class wrap-up through the large, glass windows. And here was a boy, probably less than 1 year old, throwing a ball to his dad. And here was his dad, looking at his phone. The ball just fell in his dad’s lap, and he didn’t even notice his son’s effort. Ugh. What are we becoming?

So if traditions, like decorating the tree, do nothing more than force me to put down the phone and be present, then I am incredibly grateful that my husband creates new traditions every week. The more, the merrier! This time with our kids is precious and fleeting. The celebrity gossip and articles with snarky comments that I read on my phone will be around forever.

Thanksgiving

Thanksgiving

This Thanksgiving has been my favorite so far, and the actual day isn’t even here yet! Just listening to Charlotte recite what she learned at preschool every day has been a lesson in life. At four years old, she’s full of amazement, wonder and fun facts (yesterday was something about white and red blood cells that even I didn’t understand).

I love watching her face as she laughs her way through “The Thanksgiving Song”: “I’m glad I’m not a turkey…They stuff you and bake you, and then they all taste you! I’m glad I’m not a turkey on Thanksgiving Day.”

And every day this week, when she’s climbed in the car after school, she starts excitedly talking about gratitude.

“Guess what I’m thankful for today?” The appreciation for life literally pours out of her.

As I was driving her home, I thought, “At what point does this change?”

Because I’ve certainly experienced it myself. As a child, I had that feeling of amazement and gratitude on a daily basis. I remember bouncing a tennis ball against the side of my garage for hours–just enjoying the sun and the feel of the ball in my hand. I was just happy to be alive. Of course, I wasn’t consciously thinking about being alive. But I was enjoying the moment–taking pleasure in the littlest of things.

And as I got older, that feeling began to seep away. First, there were some mean girls (ugh), and I allowed my spirit and sense-of-self to get crushed. Then there was the sinking feeling that came with getting C’s on Math tests. And then there was the pressures of bills and jobs and life. Sure enough, that incredible feeling of being in the sun with a tennis ball in my hand faded and, in its place, came thoughts of “Why me?” and “I can’t do this” and “Life is so hard.” I kept feeling as though life was just dropping things on my doorstep, and I had to deal with them.

I finally realized that it wasn’t healthy to live that way–to always feel as if life owed me something, and it was my fault for not getting the best out of it. My four year old doesn’t feel that life owes her anything. On the contrary, she enjoys all that life has given her, and she voices her gratitude aloud.

I don’t want that shift to happen for her. Is it inevitable? Gosh, I hope not. How can I help her stay grateful for what she has instead of always reaching for something more? Because that’s where true happiness lies–in looking at what’s around us and saying, “Thank you.”

Today I can make a choice. I can always reach for something more, different, or better…or I can land right where I am. So here’s where I am today: I’m in my soft, colorful pajamas on a Wednesday morning. I’m typing away in the study, listening to the soothing sound of rain on the window. My husband is in the kitchen making mac-and-cheese for the Thanksgiving party at school. My two-year-old is still fast asleep in her bed. And the sound of a happy four-year-old playing make believe floats through the air. Thank you, life.