Tag Archives: Memories

Thanksgiving

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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.

The Little Things

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TheLittleThings

When Emmy was first diagnosed with Williams syndrome, I talked to other moms who told me that I would appreciate the little things more. But I didn’t really know what that meant. First of all, at the time I was really upset about the diagnosis and didn’t want to appreciate the little things more. I just wanted Emmy to be miraculously cured. Second, I thought I had already been appreciating the little things with my first daughter, Charlotte, so I couldn’t imagine how I could appreciate them any more. And, finally, I didn’t know which little things they were talking about.

Until I experienced them for myself…

The first time my older daughter, Charlotte, put a toy phone to her ear, and said “Hello,” I thought, “Awww that’s cute.” I didn’t gasp in shock or run to get my camera. It’s expected that a typical child would put a phone to her ear. When a typical child plays pretend, the parent doesn’t go bonkers with excitement. It’s just expected.

Likewise, playing with a toy phone is not considered a milestone. Most parents of typical children could tell you exactly when their child took her first step or said her first word. But they probably couldn’t tell you the first time their child played pretend.

And there isn’t a spot for “first time playing pretend” in the baby book. First word, first day of kindergarten, first tooth, first haircut are all in the book with a blank line for date accomplished…nothing about “first time playing pretend.”

With typical kids, milestones like walking and talking are a big deal. But other smaller things seem to just happen. There’s not a ton of effort put forth by parents and therapists and doctors and other cheerleaders. Things just happen.

Many things with Emmy have been slow to arrive. It wasn’t like I blinked, and suddenly she was using crayons to draw on paper. We practiced a lot. Every time I see her take a crayon on her own and start drawing, I feel an overwhelming sense of joy. That one was a long time coming, and now it feels so good to see her scribbling away.

So in order to get Emmy to play pretend, we practiced. We put clothes on baby dolls. We cooked toy food in little pots and pans. We wheeled toy trains around a track and demonstrated how to say “Choo choo!”

We put toy phones to our ears and said, “Hello, Mommy. Hello, Daddy.”

And when Emmy spontaneously put a toy phone to her ear and said, “Hello,” I let it all sink in and appreciated every single second of that small gesture.

Right now, she imitates us a lot. But when she was younger, she would just watch intently. I used to push trains around the track, while her eyes were fixed on my every action. I would think, “Is she getting this?” And then, a few days or weeks or months later, she would totally impress me by imitating my exact motion and vocal expression. She was paying attention! She was drinking it all in and then showing off her skills in her own time.

I believe that she gets it long before she actually shows it.

And, as I’ve learned to follow Emmy’s pace, there have been many benefits:

1. I don’t make myself crazy with baby/toddler milestone books. I can’t tell you the last time I looked at one of those books, but I think Emmy was probably a few months old. Why fixate on a timeline that probably won’t apply to her and will just make me frustrated?

2. I burst with pride when she hits a big or small milestone. I don’t grumble, “Jeez that took forever.” Instead, I say, “AHHHHH!!! Look what she’s doing!!! Go Emmy!”

3. I really do appreciate the little things more. Here are a few things she did that knocked my socks off and caused me to savor every second:

-She “drove” a car at an amusement park without any prompting. The way she turned the wheel was just glorious. There’s a picture at the bottom of this blog entry: https://williamssyndromesmile.com/2013/09/04/when-you-really-really-really-need-a-vacation/

-She started finishing songs and doing the hand motions. I probably sang “Wheels on the Bus” 7,895 times without her joining in. And then, one day, I started to hear this little voice finish the lines with me. Music to my ears.

-This is a big one. In the past, when she’s been ready to take a nap, I asked “Nap?” and she responded, “Nap!” But lately, when I ask “Nap?” she responds, “Book!” because she knows that I always read her a book before putting her down for a nap. It seems like no big deal, right? If a typical child said, “Book,” it probably wouldn’t be cause for excitement. But it shows that she’s remembering what comes before and after. She gets it.

For me, appreciating the little things hasn’t revolved around the usual milestones. When she started walking, of course I was ecstatic. It was awesome to witness, and I loved cheering her on. But I’ve felt just as much excitement, if not more, over something much smaller — like the day she spontaneously picked up a toy phone and said, “Hello.”

Loud and Proud

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LoudandProud

The average person wouldn’t know that Emmy has Williams syndrome. First of all, it’s a rare (1 in 10,000) genetic condition that most people haven’t heard of. And, secondly, to the untrained eye, she outwardly looks and acts like any other child. If you’re not an expert on genetics, you probably would have a hard time picking a child with Williams syndrome out of a crowd.

This applies to many other syndromes as well. Since finding out that Emmy has a genetic condition, I’ve met other families who have revealed their own child’s diagnosis. And, just looking at them, I would have had no idea.

So I don’t have to tell anybody.

Nobody needs to know.

It can be a secret between me, my family, and the school system.

These ideas went through my head in the beginning, when we first found out. Especially because a doctor told me that I shouldn’t reveal her diagnosis until I knew someone really well. She told me that people can be confused and, later, cruel. I became terrified that other people would hate us; hate our family — just because we were different. I had an image of everyone gathered at a neighborhood picnic, and our family showing up. In my head, I saw the heads in the crowd turn to look at us and whisper among themselves that we were “that family.”

I saw it because I knew it.

When I was growing up, we had people in my town who were different. And everyone knew who they were. There was the guy who always walked around town because he couldn’t drive — because he has special needs. I always saw him at the park and the coffee shop. I was aware of the fact that he was different. And I wasn’t anywhere near as open-minded and curious as I am now.

When I was growing up, I casually noticed him, but I never spoke to him. I should have said “hello.” I should have been friendly and welcoming. I have learned SO MUCH about other people and their differences since finding out about my own daughter. That has been one of the many gifts she’s given me.

Recently, I drove around my old town, and I saw that very same guy walking down the street. I swear I cried at the wheel. All of a sudden, I became more aware of who he was. I became curious about his story. And I also reflected back on the kindness of others. I thought about the people who had talked to him at the coffee shop and shook his hand at the park. I now believe that there are more loving and caring people in this world than there are cruel people.

I believe that those who love will embrace our family enough to drown out that small faction of cruelty.

So I write this blog and share our story, loud and proud.

The response has been incredible. I don’t feel like “the others.” On the contrary. I’ve been so moved by the number of people who have accepted us — and appreciated us — just as we are. This is my family. This is reality. I can’t change who we are, and I don’t want to.

When I found out about Emmy’s diagnosis, I had some incredible phone conversations with other Williams syndrome moms, which I will never forget. I remember telling one of the moms that I was too scared to reveal Emmy’s syndrome — too afraid that the other moms on the playground would ostracize me.

She replied, “If that happens, you need to silently thank them. They’re showing you who they are — right off the bat, and you wouldn’t have wanted to be friends with them anyway.”

I take that with me. She’s absolutely right. I wouldn’t have wanted to be friends with those people anyway. And the people I have met as a result of sharing Emmy’s diagnosis? They’ve been amazing.

Gratitude

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Gratitude

I have a confession. I can be kind of a complainer.

You probably wouldn’t know it from reading this blog because:

(1) I’m not really focusing on the trivial things about my life. I’m not going to put my to-do list on here, though I would really like for everyone to help me tackle it collectively! 😉

(2) Most of my complaints come when I’m talking. When I sit down to write, I’m able to hone in on the positive.

(3) I am constantly striving to be optimistic. It’s a personal goal of mine. So I’m trying to put the good energy out there!

But, really, I can be kind of a complainer. It’s a quality that I very much dislike about myself and one that I’m trying to change.

So I am proud of a huge stride I made in that direction yesterday!

Yesterday was my 35th birthday. I’m a big, big birthday person. I’ve always enjoyed my birthdays. That has changed slightly as I’ve gotten older and found a few grey hairs but, for the most part, bring on the presents and the cake!

But yesterday didn’t feel much like a birthday — at first. Earlier in the week, Emmy and I traveled to Kentucky to meet with a wonderful team of Williams syndrome researchers, and yesterday was our flight home. Due to bad weather, we ended up getting stranded for 6 hours in our connecting airport, Charlotte (coincidentally, also the name of my older daughter!). This wasn’t just any 6 hours, but the 6 hours around dinner and sleep time. Yikes.

It had been a long trip, and I was exhausted. Not Emmy though! She wanted to run. The airport was packed with people waiting for delayed flights, and Emmy got her exercise running in and out of people and their luggage (with me trailing behind calling “Emmy! Emmy!”). This kid was having so much fun. If someone dared look her way, she would flash a huge smile, turn on her heel, and keep running. In the middle of the running, she would check back in with me for her supply of crackers to keep her going.

It occurred to me that chasing my kid through a busy airport for hours was not how I imagined spending my 35th birthday. It also occurred to me that this is the same kid that had heart surgery a couple months ago, and now her energy was limitless. When people remarked on how cute she was, I just wanted to grab them and say, “Let me tell you what she’s been through!”

When I managed to corral Emmy for 2 seconds, a fellow passenger came up to me and said, “They might cancel our flight altogether. They’re going to make the call at 9:00 pm.”

I stared at her blankly. I had already been at the airport for 6 hours, and this flight might still get canceled? I imagined finding a hotel room and then a taxi, all without our checked luggage and spare diapers. I imagined Emmy jumping on the hotel bed at midnight. I looked over at the flight board. Every flight going to our destination said “Cancelled” next to it. Except ours. Ours still said “Delayed.” There was literally a column of red “Cancelled”s and then our beautiful flight — a shining beacon of hope — that was still holding strong.

And 15 minutes later, they made the call that we were going to take off! I nearly hugged the person next to me. I was suddenly filled with so much gratitude.

We took off around 10:00 pm. Emmy curled up on my sweatshirt, and slept the whole flight. She’s actually quite good on planes. Whenever we board, people always look at me like, “You seriously brought a child on this flight?!” And then when we land, they give me big smiles and say, “She was so GOOD! So QUIET!” She knows how to make friends…

So Emmy slept, and I sat there thinking about my 35th birthday, which was nearly over. I could complain about everything under the sun. For sure, there was A LOT to complain about. I could go on for days.

Or I could switch my mindset to gratitude.

I could start with “thank you”s.

My daughter, who had heart surgery a few months ago, was just running around. Thank you. Furthermore, our flight was the only flight that wasn’t cancelled. Thank you. We were going home! I couldn’t wait to see my older daughter, Charlotte, and I also couldn’t wait to see my husband. Thank you.

I decided that I didn’t want to ruin my birthday with complaints. I wanted to enjoy it. So, while Emmy slept, and as I felt the plane hum under my feet, I kept running a list in my head of things to be thankful for.

I told myself: There are many reasons to want and many reasons to be unhappy. We can find them almost anywhere. Today, I choose to be thankful for what I have.

It was an important lesson for year 35.

And when I saw my sweet husband at the airport, with a big bunch of yellow roses, I was so thankful that he knows that birthdays are special to me too.

For all that I could possibly complain about, today is different. Today I choose to be thankful.

When You Really, Really, Really Need a Vacation

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Vacation1

I remember saying, “I really need a vacation” at various points in my life. This year, I REALLY, REALLY, REALLY needed a vacation. As in — not optional. As in — about to lose my marbles.

We’ve been going nonstop for so long now. We’ve just been pushing through. We found out tough pieces of news and dealt with surreal circumstances (like heart surgery). And with every hit, we would just keep trudging on forward. When you’re a parent, you don’t have the option, right? You can’t just hit the “pause” button. You have to deal with every single card you are dealt — at that exact moment. I so badly wanted to push “pause,” but I had no other choice.

Though, the whole time, I had my eye on the prize.

Vacation.

A friend sent me this funny article about vacationing with kids: http://www.huffingtonpost.com/steve-wiens/with-little-kids-you-take-trips-not-vacations_b_3787677.html

It’s really true. Vacationing with kids is nothing like that easy breezy trip to Aruba that you took a long, long time ago. We’ve taken a few trips with the kids, and usually I’m most relaxed when I return back home.

Not this time.

I don’t know if it was the lack of TV’s, the disappearance of a certain “to-do” list, the kids always having cousins to play with, or the amazing knock-you-over ocean waves. IT WAS WONDERFUL. All of it.

And then I came home. And there was my “to-do” list, on my desk, staring me right in the face. Ugh.

I need to find out how to get that vacation feeling every day. Even if I can just capture it for 5 minutes. Ok, I’ll take 5 seconds! I just want to bottle that feeling and pull it out once a day. Because I’ve discovered this: I really, really, really need another vacation. 🙂

Vacation2

Meant to Be

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MeanttoBe

It’s Williams Syndrome Awareness Month, so yesterday we met up with a bunch of other families for a beautiful walk to raise money and awareness.

We were at the same walk last year, which made me realize how much Emmy has grown. Last year, she was a baby, so we pushed her along in a stroller while she snoozed. I remember looking around at the other children who had Williams syndrome and just taking it all in–trying to figure out what my little girl would be like. I had read all the literature, but I still didn’t know what to expect. I still didn’t fully understand what the diagnosis meant for Emmy and for our family.

My experience has been that I can read all I want but, until I’ve lived it, I don’t truly comprehend it.

This year, Emmy wasn’t snoozing. She was dancing and laughing and eating burgers and tackling her sister and giving hugs and trying to make friends. She’s just so much fun to be around.

By all accounts, Williams syndrome is a completely random genetic occurrence. It could happen to anyone. I think the word “genetic” can be misleading because it sounds like we had Williams syndrome in the family prior to having Emmy. On the contrary, I’d never even heard of Williams syndrome! It was a total shock to everyone.

But spending time with Emmy over the past 1.5 years has made me wonder…

Was this really random?

I can’t help but think that this was meant to be…

She has taught me so much about myself and others. I’ve learned that I’m much stronger and more capable than I ever thought. I’ve learned that other people, whose brains are wired differently than mine, see the world in a special way. And, best of all, I’ve learned much more about what these words mean: love, acceptance, and authenticity.

And one more thing…

Before Dan and I had kids, we talked about what we wanted for their future. Because we’ve both been painfully shy in the past and had to work hard to push through that, we had only 1 wish: That our kids would have social personalities.

When we found out that Emmy had Williams syndrome, we immediately looked it up online. And here’s what we saw:

People with Williams syndrome have “highly social personalities.”

Gives me chills every time I think about it.

Yes, it was meant to be.

A Master of Should

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AMasterofShould

I am a master at using the word “should.” Here’s what I thought when I went back and looked at this Daddy/daughters picture:

  • It should be in focus.
  • Everyone should be sitting next to each other with gloriously happy smiles.
  • I should be able to see the girls’ matching shirts which say “Daddy’s little sweetie.”
  • I should be able to see more of Dan’s face than just 1.5 eyes.
  • Emmy should not be crying.

In other words, this picture is a failure, right?

On the contrary. I think it’s one of my favorites.

When I look closer, I see the following:

  • Charlotte’s personality is perfectly captured (easy-going nature, eagerness to please, her headband which is always askew because she likes it that way).
  • Emmy’s personality is perfectly captured (generally happy but can be very quick to get upset, especially when pulled away from Mommy).
  • Dan’s personality is perfectly captured (smiling eyes, comfortable being surrounded by his girls). I looked closer and noticed his wedding band peeking out behind his oldest daughter. His original wedding band was lost to the ocean on our honeymoon. This one was much cheaper but still holds the same value, in my eyes.

Maybe when things are not as they “should” be, that means they are just right.

We took Emmy to the doctor today. It’s the same hospital where I gave birth to Emmy and, every time I go back there, I’m flooded with the emotions of that time. We didn’t know Emmy had Williams syndrome, but she was in the NICU for 8 days, and the entire experience was emotionally painful. The hospital staff was wonderful and they did their best to console me, but it was very sad to be separated from Emmy right at birth and then not be able to take her home for an entire week.

I found myself thinking: “It should have been different. Emmy should not have been blue when she was born. Emmy should not have had heart problems. I should have had the happy hospital stay that most new moms have…” The laundry list of shoulds continued.

Then I stopped myself. What can defeat a case of the shoulds? Acceptance.

I accept that I had an emotionally rough stay in the hospital. I accept that Emmy was in the NICU. I accept that she was not 100% healthy. I accept that things did not turn out exactly as I expected.

I accept it, and I am grateful for all that I have.

Attached

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Attached

Here’s an easy way to find me…

Look for a cute toddler with a bright smile. Now look to see who she’s attached to.

Why, hello there!

Emmy sticks to me like glue, which is interesting because Charlotte is the opposite. Charlotte has been fiercely independent from Day 1. She has no problem walking into a room full of new people and simply throwing a casual glance back to mom and dad.

Emmy, on the other hand, is either in my arms or clutching onto my leg. If I dare put her down, she turns red in the face and screams at the top of her lungs. She holds her arms in the air, desperately pleading with me to pick her back up.

We were in a restaurant the other night, and I got up to take Charlotte to the restroom. When we were halfway to the back of the restaurant, I heard a piercing scream from the front. “WAHHHHH!”

Emmy didn’t appreciate my disappearance one bit.

Yes, it would be lovely to use the restroom without hearing heart-wrenching screams on the other side of the door. And it’s exhausting to hold twenty pounds of toddler all the time. But I suspect that when she’s a teenager, I’m going to long for these days.

I have a feeling that I’ll miss those little toes following me everywhere.

Being Vulnerable

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Beingvulnerable

I’ve had a scary realization. I’m at my best when I’m vulnerable.

A lot of people were surprised with how personal my blog is because I’ve made a practice out of being stoic and reserved. I once went 5 years without shedding a single tear and loved to brag about it. I used to proclaim, “I don’t cry!” as if it were something that deserved an award.

I didn’t start out that way. When I was younger, I was very sensitive. I would readily reveal my feelings (in many aspects of my life–love, friendship, etc) expecting that the other person would respond in kind. Wow, did I get burned.

When I was in elementary school, I found a friend who wasn’t really a friend, and she announced to the entire class that I had a crush on the most popular boy in fifth grade. Let’s call him Billy. I remember feeling betrayed when that girl came over and whispered, in a snakelike fashion, with blood practically dripping from her lips, “I just told everyone that you have a crush on Billy.”

My heart stopped. Would my Prince Charming finally announce that he’s interested in little old me?

Then Billy came sauntering over and said, loudly and proudly, “Just so you know, I DON’T like you.”

Everyone laughed, and I cried for the rest of the day. IT WAS AWFUL. I can put myself back into the feelings of that scene very quickly.

This pattern repeated itself time and time again, and I retreated further and further behind a protective outer shell. At a certain point, I’m not sure that I even knew what my real feelings were, and I certainly didn’t reveal them to anyone else.

Over the past few years, the concept of vulnerability has kept popping back into my life, and I’ve finally become more willing to explore it. I became vulnerable when I found a partner in life who I can tell anything to and not fear his opinion of me. And thank glory I found him. I dated a string of zeros before meeting Dan. I also became more vulnerable when we had children, one of whom has medical issues that make me worry every day. And then I started to open myself up to new experiences, new people, and a level of openness that I hadn’t touched since childhood. And my life started to take on new, vibrant colors.

It’s scary to be vulnerable, but I have no doubt that it’s where I’m supposed to be.