Six Years Old

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Emmy is six years old! She was only one year old when I started this blog. Hard to believe!

Emmy is feisty, fearless, and persistent. Those qualities have remained since she was born. She actually broke her arm at the end of the last school year because she was climbing up a structure on the playground during recess and fell at the very top. (I almost passed out when the school called me. But so far, it looks like she’s healing beautifully.) After her arm was out of the sling, we walked by the school playground and she casually asked if she could climb that structure again.

“That one??” I asked. “You fell from that one!”

She smiled and started climbing. No fear whatsoever.

When we were trying to plan her activities for this year, she asked if she could take karate classes. I wasn’t sure about karate… Let’s just say that it’s not really my speed. And a friend said that it really tests your balance, so I was concerned that Emmy would have an especially tough time.

When we showed up early for our trial class, we got a chance to see the older kids sparring. Emmy sat on my lap while we watched the kids really going at each other. My eyes nearly bugged out of my head. I was going to sign up my little darling for this? I figured that after watching the sparring session, she wouldn’t want to do it anymore. Clearly I do not know my daughter!

“Are you sure you want to do this?” I asked nervously.

“Yes. I love it,” she replied, smiling.

So now Emmy takes two karate classes a week. She was right. She loves it.

It’s interesting to see the activities that really capture her interest. She’s tried dance, gymnastics, piano, t-ball, yoga, and soccer. And while she enjoys them, she will drop everything for karate and swimming.

She also loves arts and crafts, but I fear that this interest is really about being destructive. One thing we still struggle with it that Emmy likes to tear things about. I know that this can be common for kids with Williams syndrome. But for a neat person like me, there are some growing pains associated with this one.

For example, Emmy loves to use scissors. And I trusted her with scissors because she does a solid job cutting paper and has never cut her skin. But one day I popped my head into the study to see that she found a bunch of her nice bracelets in a jewelry box and cut them up. Ughhhhh.

Or she’ll take a bottle of glue and, at first, she’ll be purposeful about where she puts it. And then, it’s all over…

Or, we were watching Charlotte’s soccer game the other day, and I gave Emmy a piece of paper and pencil to keep her busy on the sidelines. The paper had interesting designs on it that you could trace. She turned it over to the back and started poking holes in it.

I can tell that she gets a thrill out of being destructive.

But I’m being nit picky here. Most of the time, Emmy is a pleasure. Her personality is awesome. She’s usually in a good mood and smiley. When she does get upset, there is always a legitimate reason behind it. I don’t think she’s ever thrown a tantrum “just because.”

Emmy still loves Halloween. She talks about Halloween from January through December. She’s actually brought a new joy of Halloween to everyone in the family. I wasn’t majorly into Halloween when I was younger. I liked the candy, but that was about it. I was much more of a Christmas kid.

But now, Halloween is such a happening in our house. We have a store nearby called Spirit Halloween with zombies and werewolves that pop out when you walk in. When we went on our first Spirit Halloween visit this fall, it was practically a sacred event. I even took a video of us walking through the hallowed doors and getting scared by the fake spiders that jump out. I think Charlotte and Theo also appreciate Halloween even more because of Emmy. When we drive by houses with Halloween decorations, everyone in the car gets especially excited to point them out to her.

While Emmy’s personality is lovely and she’s a joy to be around, my heart still hurts as I watch her struggle in different areas. She’s repeating Kindergarten this year. She actually entered Kindergarten on the younger side, at five years old. And she immediately stood out in every class picture because she is so tiny. She loved school last year and never complained, but it was tough for her. Once school started, everyone was off to the races. And while other kids progressed quickly onto writing sentences, we were still practicing how to write Emmy’s name. Thankfully, this year, she’s holding her own quite nicely. School only started a few weeks ago, but she’s with the pack much more than last year. I’ve already seen significant gains in her progress.

Emmy has a new phrase: “A little help.” The first time I heard her say it was when she was riding her bicycle with training wheels and got stuck on a dip in the pavement. She continued to push the pedals around and around, but they just kept grinding. She is a persistent kid, so she tried desperately to get herself out of the rut. Finally, she looked my way, flashed her adorable smile, and asked, “A little help?” I’ve heard her say it a few times now. It’s very gentle; very sweet.

The truth about Emmy is that she doesn’t WANT help. She wants to do everything herself. But sometimes, she NEEDS a little help. I think this is a misperception about people with special needs. I’ve heard it said that people with special needs expect things to be handed to them — or that they needlessly demand help with every little thing. I’ve found it’s just the opposite. Emmy doesn’t WANT the help. She would love to be able to do everything herself. But sometimes, she NEEDS a little support to make it over the finish line.

When she does struggle, it’s hard to watch. Every morning, as she reaches for the banister to walk down the stairs, her hand shakes slightly with an intention tremor. I think her brain is still getting in sync with her nervous system early in the morning because it’s most obvious at that time and then subsides as the day goes along. Other people would probably not even notice the shaking. It’s so slight. But I feel it in my heart. It’s that tiny, little shake that is the give away. Things are harder for her, even though she never complains.

Emmy just adores her brother, Theo. If she could smother him with kisses all day, she would. He mostly runs away from her smothering, but they have a ton of fun together. They’re little buddies.

And Emmy looks up to Charlotte, who has very much adopted the big sister role for her younger siblings. Charlotte is a caretaker, but I’m conscious of the fact that I don’t want to put too much pressure on her. We had a disagreement over the summer where I asked her to watch Emmy at camp, and she pulled the reigns too tightly around Emmy’s fun. So we had to talk about what it means to “keep an eye on your sister” versus chasing Emmy around and telling her to not participate in activities because she might get hurt. But Charlotte has always been mature and, at eight years old, she was able to embrace that concept a bit better once we talked about it.

As time moves along, we all find our roles. It’s interesting to see them sway and shift as school, activities, and friends circle around our lives.

My goal this year is to move towards Minimalism. You know these guys?: The Minimalists

I’m very, very good at acquiring STUFF. It’s somewhat of a speciality. So I’m dipping my toe in the pond of minimalism, starting with The Minimalists and everyone’s favorite declutterer, Peter Walsh. As I look over all of my STUFF, I realize that this needs to be a major overhaul. Wish me luck. ūüôā

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Four and-a-half Years Old

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Here is our sweet, funny, smart, beautiful, persistent, and loving Emmy. She is everything I thought she would be. Not at first, though. Not when we found out about Williams syndrome. I wasn’t ok with the diagnosis at first and I thought, “Please just let me be ok with this by the time she’s 8 years old.” I gave myself ample time to let it sink in.

Turns out that I only needed a year, but I’m glad I gave myself 8 because I think creating space is important.

I was ok with it after a year. I was totally accepting of the diagnosis, and I was completely in love with Emmy–just as she was.

And then she changed. Into more. And more. And more. And more. At four-and-a-half years old, she puts me in a state of constant awe.

She is, truly, as sweet as her smile shows.

She shares EVERYTHING. I took her to the library, and the librarian gave us a donut. Emmy said she wanted to save it until we got home, so she could share it with Charlotte.

She will readily give Theo a toy that she’s playing with–no hesitation. “Here, Theo. Have this.”

She says things like, “I love you so much, Mommy” and “You’re the best mommy ever.” (Which isn’t true, but I love hearing it nonetheless.)

She is also witty and sly. With a more crooked version of her beautiful smile, she’ll goad Charlotte on. She definitely knows how to push buttons, but she does it in a funny way. If we’re eating a more adult-friendly meal like pot roast, she’ll knowingly say, “Good news, Charlotte! We having mac-and-cheese for dinner!” Then Charlotte will get all pumped up…only to be disappointed when she reaches the table. Emmy finds that hilarious.

Or before Christmas,¬†I was telling the kids that Santa brings presents to children¬†who are nice; not naughty. So of course Emmy would offer, “Naughty like Charlotte??”

Charlotte is far from naughty, but Emmy totally knows that and loves to try and get under her skin sometimes.

Emmy is very smart, and I feel for her because she KNOWS a lot, but her hands don’t work fluidly with her brain quite yet. So while she knows all the letters, writing is very difficult for her. I watch her hands shake slightly as she struggles to hold a pencil. Drawing a smiley face is an unbelievable accomplishment. I recognize how frustrating it must be to have your mind go one direction and your body another.

But, boy, is she persistent! This kid DOES NOT GIVE UP. She gets up on the balance beam with everyone else in gymnastics. She gets scared. Sometimes she cries. The teachers are wonderful and help her the whole way along. And at the end, she always says, “I did it!! I’m so proud of myself!”

Emmy has therapists in school, and they are consistently¬†reporting back to me that she comes to the therapy room with a smile on her face, ready for¬†anything–even if it’s hard. It’s funny because sometimes they say, “It’s a pleasure to work with Emmy.” And I picture this 4 year old in a little pinstriped business suit, marching off to work in the therapy room. What a trooper!

Our life is quite typical…I think. Emmy likes to do everything that every other 4 year old does. She likes to get her hair braided¬†and put on pretend makeup. She has favorite outfits, and she’ll often ask me if I washed her pink polka-dotted sweatshirt. She loves going to the park, and (naturally) she loves anything with sugar.

She also can be obsessive about things, which I think is more of a Williams syndrome trait. She might ask a question 100 times (like “Where are we going?” even though she knows exactly where we’re going). She also will become obsessed with certain “themes.”¬†For the past year, she was into anything scary (vampires, ghosts, zombies, etc). There’s nothing quite like sitting across from an adorable 4 year old at dinner and having her ask, “What you like better? Werewolves or goblins?”

Right now, her theme is still anything scary, but she’s also introduced CANDY. So now it’s “What you like better? Skittles or Twizzlers?” We have treat nights on Monday and Friday, so all week long, she’ll ask, “No treat night tonight, right?” And then on treat night, she’ll say all day long, “Don’t forget!! Treat night tonight!”

The obsessive stuff can be rough when I’m tired. I usually just answer her questions repeatedly, but sometimes I’ll stop and say, “Emmy, you already asked that question, remember?”

And then she’ll say, “Oops! Sorry!”

She’s so cute.

In a way, I can’t believe I gave myself 8 years to be ok with this. That seems like a long time, when I have someone so irresistible right in front of me. But when you have a baby in your arms who you’ve barely met, and you’re reading about a scary diagnosis, all you can do is promise yourself that–in time–this will be ok. In time, you will accept and even appreciate the sweet gift before you.

Luckily, she is everything I thought she would be–and much, much more.

Tradition

Tradition

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

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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‚ĶThey 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.

Messy Life

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I have a vision of myself in the future.¬†I am totally laid-back and easy going.¬†I wear pajamas till noon, let the kids dump Play-Doh on the couch, and don’t freak out when Emmy tries to put our dog’s bone in her mouth. I’m known as the “cool mom” around town, and my kids brag about how we finger paint the walls.

In reality, I’m kind of OCD. I am very much aware of the slightest thing that’s out of place. This is a great quality to have as an editor. But it’s not so great when I’m trying to raise my children to be more free spirited than I ever was. Charlotte has already adopted my fear of bugs, which makes me realize how easily our children can step right into our shoes.

In my ongoing effort to be more laid-back (let me know if you have any advice!), I didn’t make a peep this morning when the kids threw grass from their Easter baskets all over the livingroom. Where I initially saw a mess, they saw pure joy. They laughed like crazy, and I couldn’t help but appreciate every second of it. It’s the incredible messiness of life.

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I swear I have more to learn from them than they have to learn from me.

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Green Bagel Morning

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My husband, Dan, loves traditions. Two years ago, he decided that green bagels on St. Paddy’s Day would be a tradition. He’ll dutifully go to multiple bagel places and wait in long lines (something I am far too impatient to do). Charlotte loves it. Emmy is still too young to understand the tradition, but she does appreciate a good, green bagel.