Doing All Of The Things


Our babysitter was telling me about how she was excited to see a friend that she hadn’t seen in a while. The friend said, “Can we do all of the things?” And our babysitter replied, “Yes, we will most definitely do all of the things!”

Every time I think of this expression, it makes me laugh. I guess it’s a new expression that means “doing everything we love to do”?? I guess??

Sometimes I’m tempted to use it in conversation, but then I think people would accuse me of trying to be younger than my years…

But I do think of this in terms of Emmy. I want her to do all of the things.

I want her to play sports, go to dance class, take an art class, participate in the various clubs at school…

She doesn’t have to do anything she doesn’t WANT to do. But I want her to have the opportunities that any typical child has.

Some experiences have been easier than others. We have a gymnastics studio near us, and the teachers have been awesome with Emmy. She takes classes with her peers, but the teachers will modify a little bit for her. One student might walk across the balance beam on her own, while Emmy will get a little support from the teacher. One student might do a cartwheel flawlessly on her own, while the teacher might hold Emmy while she practices her cartwheel. But she does everything that everyone else does, and the teachers have been very happy to accomodate for Emmy’s needs. I didn’t even have to ask them. They just did it.

On the other hand, we have had a doozy of a time with dance. I enrolled Emmy in ballet classes at a very strict studio. It wouldn’t have been my preference, but Charlotte really liked the studio at first, and she wanted to go there. I’m a big proponent of having Emmy try everything that Charlotte does. So I signed Emmy up for the class, but I also told them that she has Williams syndrome because I knew that the standards of the studio are more strict than others. For example, a student would have to pass a “dance test” before moving to the next level.

The receptionist gave me the side-eye and said, “We can put her in our youngest class…We’ll start her there…That’s as young as we go…”

This was one of those situations that made me very uncomfortable. I could feel the judgment. I knew that the kids would be younger than Emmy. But I also felt that this person wasn’t keen to have her in the dance school — period — and this was a way to get her in. After all, the aim of this school is to build up dancers in a very strict, professional atmosphere. If Emmy couldn’t perform the steps, how would the teacher react?

But, on the other hand, Charlotte took a practice class, and the teacher was great. I really wavered back and forth on this, but I signed Emmy up nonetheless and put her in the youngest class.

The interaction with the receptionist made me feel “less than.” It made me feel as though I had to apologize for intruding on the professional atmosphere of the school. It made me feel as though I had to make excuses for my child who was born as she was — through no fault of her own.

I should have known *at that moment* that this wasn’t the right place for us. But, you see, I want Emmy to do all of the things! I want her to wear her little ballet outfit with her hair up in a bun. Mostly, I want her to have the exact same opportunities that Charlotte does. If Charlotte is accepted into the class as a typical child, I want Emmy to be accepted as well.

Here’s the irony. The class ended up being a disaster but not for the reason I imagined. It wasn’t because Emmy couldn’t keep up with the steps. In fact, because the kids were younger than Emmy, they were totally out of control! They didn’t follow directions. They cried during the whole class and ran out of the room constantly. I don’t blame them one bit. They were quite young! But that wasn’t the class for Emmy. Just because Emmy has some challenges doesn’t mean that she should immediately be placed with younger children. It was really illuminating! Emmy surpassed these kids in maturity. I asked the teacher to move Emmy to the next level, and she declined. She said Emmy was placed correctly. I kindly disagreed.

This is a dance school that many people praise, but we ended up leaving. It just wasn’t a good fit.

That interaction soured me to dance for a while, but it was something that continued to eat away at me because Emmy loves to dance. I didn’t want to deny her the experience of a dance class just because of this one situation.

After a few months, I decided that we should try a free practice class at another dance studio near here. It’s a very popular studio, but I’ve heard that it isn’t as strict as the first.

Everyone seemed very nice — the owner, the receptionist…we were off to a good start! This time, I didn’t tell them that Emmy has Williams syndrome. I didn’t want them to put her in the younger class again. I couldn’t risk another experience like the previous one.

This class was for five to seven year olds, so both Emmy (at age 5) and Charlotte (at age 7) would be in the same class. It’s an “acro” class, so it’s like “acrobatic dance.” Charlotte would look out for her sister. This seemed like a good set-up.

I dropped the girls off in the class and was lead to an area where I could watch them. As the minutes passed, I almost cried. I couldn’t hear what they were saying, but I could see how the teachers were treating Emmy. When she couldn’t get into a straddle perfectly, they stood over her and admonished her. When Emmy did a bridge (which is really hard for someone with Williams syndrome!! Really, really hard!!), I could tell that they weren’t impressed. They weren’t kind. I walked back in the class, picked up Emmy, and carried her out of the room. The teachers saw me and completely ignored me. Charlotte came running over and said, “This isn’t going well.” I asked her if she wanted to leave, but she said she would finish out the class. I watched the rest of the class while holding Emmy in my arms. I was fuming.

After it was over, the teachers walked out of the room and looked at me with disgust. They didn’t say anything to me and just marched by.

“What happened in there??” I asked Charlotte.

She was rattled. “Mom, they were so mean to Emmy. She did that bridge, and it was AMAZING! Emmy said, ‘Am I doing a good job, teacher?’ and the teacher said, ‘No.’ Can you believe that? I WAS SO PROUD OF HER!”

She continued. “I could hear the teachers talking about Emmy. They said, ‘What’s wrong with her?’ And ‘I thought she was supposed to be five years old?'”

Charlotte was very upset. My seven year old knew this wasn’t right.

I was appalled by the way they treated Emmy, and of course we didn’t go back. Friends told me to contact the owner and express my disapproval. I haven’t done that. In the past few weeks, I’ve heard similar things about this studio, so it makes me feel as if this is the atmosphere, and I don’t know that things will change if I speak up. But maybe they will. I don’t know. The whole experience really upset me, and I kind of just want to move past it.

But I want Emmy to do all of the things! Just because other people don’t know what class she fits in or don’t understand her challenges doesn’t mean that she shouldn’t have the opportunity to do all of the things, right? The Americans with Disabilities Act is something with which I have become very familiar. It protects my daughter. She should be able to experience everything that everyone else does. However, the Americans with Disabilities Act doesn’t change people’s reaction to her. While she may be able to DO all of the things, she may not be viewed in the same light  — or with the same promise — as the other students. That part is rough.

You know what? Third time’s a charm.

A mom told me about yet ANOTHER dance studio that just opened. The owner, she said, is fabulous — very kind and understanding. I pushed my misgivings aside and only saw hope. I emailed the owner and explained our situation. I told her about Williams syndrome, and I also told her briefly about our past two experiences. I told her that I don’t want Emmy to be automatically put with the younger kids, but I also don’t want her to be admonished for not doing the steps properly when she ALWAYS, ALWAYS tries her best. I asked if we could figure out a class that might be right for Emmy.

She called me right away. She told me that my email broke her heart and that she would absolutely find the right class for her. She did, and Emmy loves it. It’s another “acro” class. She is with her typical peers that are her age, and the teacher helps her when necessary. She gets some modifications. When she has trouble with a big cartwheel, she tries a small cartwheel. And her bridge has only gotten stronger and more beautiful. The teacher consistently praises her effort. It is a wonderful experience. They have made us feel welcome and included.

I don’t know why every place isn’t like this. It took us three chances to find a place that would accept us as we are. It’s not that I’m being difficult or that I’m expecting special treatment. I just want Emmy to be able to do all of the things that everyone else does. I think that’s reasonable. In fact, I know it is.

Williams Syndrome Convention


We drove for 9 hours to get to Columbus, Ohio…with 3 kids in the car. When we first signed up to attend the Williams Syndrome Convention, it seemed like the drive would be palatable. But as the days inched closer, I kept turning to Dan with fear in my eyes and saying, “I think we should reconsider…can we cancel?” I was freaked about that drive.

Well, as Theo loves to say, “Weeee DID IT!”

And I’m so glad we went! It was worth every minute in the car and then some.

When we first arrived at the hotel, Dan and I were totally out of sorts. It took us a while to get the stroller out, grab our suitcases from the car, and chase kids around the lobby. The kids were anxious to do everything immediately!

As we were checking in and trying to calm them down, Charlotte started to notice all the people with Williams syndrome in the lobby. We had already been to a Williams Syndrome Convention in Boston in 2012, when Charlotte was only 3 years old, but she didn’t have any clue about Williams syndrome at that time. Now at 7 years old, she understands a little more about it, and she started to take in the sight of all the friendly people in the lobby.

It’s interesting to see how the week has an effect on you. When we went to the Convention in Boston, Dan and I were at first overwhelmed by the friendly nature of people with Williams Syndrome. Emmy was only 1 year old at the time, so we didn’t have a strong idea of how social she would be. Plus, we’re quite reserved ourselves. So when people started approaching us right off the bat to have a chat, we were a little thrown off. As that week went along, we totally embraced the culture and loved every second of the friendliness. There’s something so awesome about someone remembering your name and greeting you with absolute joy every time she sees you on the elevator. We missed that feeling of joy like crazy when we got back home.

Just like us, Charlotte wasn’t used to the friendliness. As she looked around that lobby, she said cautiously, “I think I’m the only person here who doesn’t have Williams syndrome…”

“You’ll see lots of people here,” I said. “Can you tell that Emmy has Williams syndrome?”

“No, definitely not,” she replied.

Charlotte just sees Emmy as her sister. She doesn’t really think about Williams syndrome.

Later at dinner that night, Charlotte seemed to really ponder the idea of “Williams syndrome.” I could see her working over it in her mind as she sat next to Emmy in the restaurant booth. She was studying her face.

Finally, she said, “Mom, I can see it.”

“Huh?” I asked.

“I see it in Emmy. I see it in her lips.”

As the days went on, Charlotte met many people with and without Williams syndrome. I could visibly see her grow more and more comfortable with everyone’s friendliness. She allowed herself to loosen up and just enjoy all the different personalities. I have a very boring saying that I tell her all the time that kind of sums up life: “Everybody’s different!” We use that one a lot, especially when kids on the playground ask why Emmy is smaller than everyone else or why she can’t run as fast as the others: “Everybody’s different!” I’ve noticed that it’s a good way for Charlotte to close out a conversation with a kid on the playground who keeps prodding her about Emmy. Who can possibly argue with “Everybody’s different!”??

During the week, Charlotte went to a YMCA camp (organized through the Convention) and made a bunch of friends — mostly typical siblings of people with Williams syndrome. She really got along with these kids nicely! Every night she was bubbling over with stories about her new friends.

Emmy and Theo also went to camp in the hotel. There were all sorts of activities for them to do throughout the week. I think Emmy’s favorite part was meeting Batman. She has no fear. Ever.


While the kids were at camp, Dan and I attended sessions and learned a lot! I have to sheepishly admit that I thought I was pretty much an expert at Williams syndrome after 5 years with Emmy. There is SO MUCH more to learn! There were plenty of people with grown children in their twenties and thirties who still came to learn — and perhaps mostly to share their stories with others.

My favorite session was the exact same favorite that I had at the Convention in Boston: the sibling session. When you hear brothers and sisters talk about their siblings with Williams syndrome, it immediately brings tears to your eyes. It would be IMPOSSIBLE not to cry in that room. They see their siblings like no one else can. And they’ve become more tolerant, understanding, and patient people because of their siblings. Many of them go into teaching, physical therapy, or music therapy. Many of them volunteer at Williams syndrome camps, and many of them were volunteers at this Convention. Imagine learning the beauty of volunteerism as a young teenager? That has to change your life.

The siblings said that coming to these Conventions every couple of years really helped them to better understand their own brother or sister with Williams syndrome. They encouraged us to keep bringing all of our kids because it helps the typical siblings to comprehend Williams syndrome and helps to foster understanding and appreciation of their brothers and sisters, instead of frustration or resentment.

So of course Emmy and Theo had a great time at the Convention. They just played and had fun all day. Theo didn’t know why we were there because he’s too young. I think Emmy is starting to understand Williams syndrome just the tiniest bit, but it’s still very much of a foreign concept. But we didn’t know how Charlotte would react. I know it sounds silly, but being surrounded by friendly people can be overwhelming. Of course, it shouldn’t be that way. In a perfect world, everyone would be friendly! But our society is generally more closed off, so it’s like being in an alternate universe when you’re surrounded by social people who approach you without reservation.

To our delight, Charlotte had the most amazing time. She declared that it was the best vacation she’s ever been on!! She really, really loved it. Kudos to the Williams Syndrome Association for putting together an awesome Convention that had my 7 year old gushing!

On the last day, we were standing in the lobby checking out, and several adults with Williams syndrome came over to talk to us. One woman pointed at my kids and said, “They are so adorable!!” Then she looked closer and said, “Which one of you has Williams syndrome?”

I was surprised to see Emmy raise her hand right away and say, “I do!”

I’m not sure that she knows what Williams syndrome is, but now it’s official — she definitely knows that she has it.

We can’t wait for the next Convention! Especially Charlotte.

A New Twist


So here’s a fun, new, little twist. We found out that Emmy has Celiac disease!

She’s always been petite, which we attributed to Williams syndrome. But she’s also fatigued most of the time, which we also thought was related to Williams syndrome (and the low muscle tone that comes with it). Stomach problems were only an occasional thing, so Celiac disease never crossed our minds.

I brought her to a new doctor to discuss Emmy’s growth, and she asked if we have any allergies in the family. I have a sensitivity to gluten and dairy, but other than that, no formal allergies. The doctor said, “Well, since we’re getting her blood taken, let’s check her for Celiac disease because of your gluten sensitivity.”

During that time period, our attention immediately focused to Emmy’s heart because a few doctors heard a heart murmur (which hasn’t been heard since before her heart surgery in 2013), and there was a scramble to get an appointment with our cardiologist. I was totally focused on her heart, which is ok — thank goodness, and I put the discussion about Emmy’s growth temporarily out of my mind.

On the same day the echocardiogram of her heart came back ok, we got a call from the first  doctor to say that Emmy has Celiac disease, and her numbers are off the charts! (They don’t even need to do an endoscopy to confirm the results because her numbers were so high.) I was shocked but also so incredibly relieved about her heart that I thought, Hey, we can handle Celiac disease. No big deal. Especially because I’ve been gluten-free for a while, so I already had some familiarity with what it means to eliminate gluten.

Then, as the days passed, I realized:

  1. A child going gluten-free is totally different from an adult. I’m ok with salad and nuts. Emmy wants mac-and-cheese and chicken fingers.
  2. Eating out will never be the same. We can no longer just grab something anywhere at anytime.
  3. Birthday parties are going to be a bear for her. When the other kids are having the standard pizza and cake, I’m going to have to find an alternative for her. (Incidentally, am I supposed to show up with my own pizza and cake?? This is going to be a weird situation and has the potential to alienate her from her friends. I’m nervous about this one…)
  4. Classroom parties at school are also a problem. For her St. Patty’s Day party, my husband Dan had to quickly bake some gluten-free cupcakes.
  5. Emmy has a severe level of Celiac disease, so she has to wash her hands after touching something as innocent as Play-Doh (which has gluten apparently!), and we have to read every label to make sure that the food wasn’t processed in a facility that also processes wheat.
  6. My very first blog post, Green Bagel Morning, takes on a whole new meaning. When I wrote that, I never would’ve thought that we’d have to stress about something as simple as green bagels three years later.
  7. Oh and…I’m going to have to learn how to cook. Ughhhhhhhhhh. And BAKE. UGHHHHHHHHHHHHHHHHHHH.

About that last one… I’m an ok cook, but it doesn’t come easily to me AT ALL. If you want to see me pull my hair out, give me a recipe. It’s all so overwhelming. I actually go into panic mode. I will read a recipe ten times and still not know what I’m supposed to do. All the words start to blend together, and I begin to have a mini panic attack.

If you don’t believe me, consider this. The other day, I asked Dan if we have a Cuisinart. He started laughing and said, “Of course we do! We got that for our wedding!” Then I asked him to show me where it is. And because it all became so daunting (with the blades and everything — yikes!!), I asked him to just take out the Cuisinart and leave it on the counter. It’s been sitting on the counter mocking me for about a week. I haven’t touched it…

But I can throw together an ok meal (usually sans recipe because I just go for the trusty olive oil and seasonings). However, baking is a JOKE. Here’s a secret: I have not baked anything from scratch ever. EVER. EVER. EVER.

Well, that’s not entirely true. I did try once. When we were trying to sell our house, I was thinking of ways to make it smell nice for a showing, and somehow I came to the conclusion that baking brownies was the answer! Because recipes make me panic, I just casually glanced at a recipe and then threw the following in a pan: eggs, butter, cocoa, baking powder, and something else (maybe milk?). I stirred it all together and baked it! Ok, I have to say that it smelled AMAZING. It actually smelled like brownies, and even our realtor commented that the house smelled great. I thought, This baking thing isn’t so hard after all!

But when Dan came home, he made the mistake of taking a bite. I think he’s still recovering…

That was the last time I attempted to bake anything.

The picture at the top of this post was taken when I discovered a gluten-free bake shop! It’s an hour away, but I’m willing to drive. The kids loved it!

So here we go on our new journey. Hang on tight!🙂

Four and-a-half Years Old


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.

A Potential Answer


Theo came home tonight! And we have a potential answer. He did a barium swallow study today, and the speech pathologist noticed that he was close to having his drink go down the wrong pipe. Apparently some kids, particularly those who have had laryngomalacia, can have trouble with accidentally sending their food/drink down the wrong pipe. If he did have food/drink go down the wrong pipe, that could’ve caused a throat infection, which could be what he’s experiencing now. The only problems with this theory are that (1) the throat culture did not grow bacteria and (2) our doctor came in at the end of the day to say that he thinks that the swallow study was influenced by the fact that he just had surgery and, therefore, we can’t rely on this conclusion.

But guess what…a bunch of really scary tests came back negative. Also, the cardiologist did an echo and confirmed that he *does* have a heart murmur (which didn’t show up until now because apparently some heart murmurs show up in toddlerhood!!), but she said it was common and nothing to worry about.

So now that we’ve ruled out a bunch of scary stuff, I’m finally breathing a sigh of relief. The swallow study may not have been accurate, and this may not be the *exact* diagnosis. We’ll have to work with the pulmonologist going forward to get to the bottom of this. But for now, I feel much better that we’ve been able to rule things out, and I’m SO very happy to have him home!

Thank you for thinking of us!!!❤ It’s been quite an ordeal…

Theo Found the Playroom

IMG_3927 copy

Today, we moved to a new floor in the hospital, and Theo was super happy to find the playroom! He’s been tied up to wires, but today he finally broke free for a bit and RAN and RAN.

We still have more questions than answers. He’s had a lot of bloodwork and other tests as well. They’re testing for everything under the sun. One of the doctors thought he heard an issue with his heart today, so they’re even bringing in cardiology tomorrow. Hopefully that’s just an extra precaution, considering our history.

There is still a lot of mystery surrounding his condition, and he continues to have excessive mucus in his throat and lots of drool. The good news is that the tests are being done, and they’re trying to leave no stone unturned.

If they do find something, I hope it has something to do with magical powers……🙂

Thanks for your well wishes!!

Theo Update

Hi Everyone:

Just a super quick update because I know we have many sweet people who are thinking about us (thank you!!!!). The surgery went ok. The doctor found the laryngomalacia that we suspected and snipped a teeny bit (no big deal). Other than that, he found a ton of fluid in Theo’s throat and lungs. He sent the culture in, and we’ll get those results in 3-5 days.

We were in the recovery room, and Theo was pretty miserable (of course), but we felt like he was doing pretty well (all things considered). I offered him an ice pop because he was refusing to drink, and it fell on the floor, so he started crying. But as he started crying, all that mucus got stuck in his throat, and he couldn’t get behind it. He kept trying to breathe again, and it wasn’t happening. I started cajoling him to breathe again, and then he turned blue, and I screamed, “HE’S TURNING BLUE!”

Luckily, a bunch of nurses came running over. One gave Theo mouth-to-mouth resuscitation, and then they pumped some oxygen into his lungs, and he started breathing again. It was a big scene and, of course, reminded us of when Emmy went into cardiac arrest in the recovery room. (Why does this keep happening???)

He was then transferred to the PICU, and then there was a lot of talk of getting a pulmonologist in because Theo seems to have issues with not only his throat but his lungs as well. Just an excess of mucus all around. So now we’re undergoing some tests and trying (yet again) to get to the bottom of this issue. Theo is stable but still miserable, and the fluid is so loud. You can hear it when he breathes. Poor little guy.

Thanks for your thoughts and prayers!! I’ll keep you posted!!❤