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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Awareness

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May is Williams Syndrome Awareness month.

Please read this blog post by Terry Monkaba, Executive Director of the Williams Syndrome Association –>¬†A Special Awareness Campaign. She¬†writes about Jonathan Martinez, a nine¬†year old¬†boy with Williams syndrome who overcame heart surgery but tragically¬†lost his life when a man came into his special education classroom in San Bernardino¬†and began shooting. I know that many people heard about this senseless tragedy¬†in the news, but I don’t know if everyone realizes that Jonathan had Williams syndrome. My heart absolutely breaks for his family.

When I think about awareness, I think about how far¬†my own family has come in terms of recognizing, then accepting, then championing people with Williams syndrome. We were not very well-educated about people with special needs, especially the older generation of my family. However, we’ve come so far over the past couple years while we watch Emmy grow. But there is an element of sadness too. I have lost two of my biggest champions — two people that eagerly awaited my blog posts as if they were hot off the presses. Two people that loved Emmy beyond words.

My grandmother, Simone, died in 2014 from cancer. And this past Mother’s Day, my aunt, Eva, died — also from cancer. These are two people who didn’t know much about special needs before Emmy but, boy, did they embrace her. When Emmy had heart surgery in 2013, my grandmother was in the hospital almost every day¬†of the 30-day stay. My grandmother loved to talk, but she would come and sit quietly by Emmy’s bed — just watching her. She also filled up huge, heavy thermoses¬†of tap water, which she would bring to the hospital every day to keep us hydrated. She dragged the thermoses on the bus as she made the hour-long trek back and forth, and I would tell her that she should leave the heavy thermos at home. They had water in the hospital, and I hated the idea of her carrying heavy things on the bus. But she wanted so badly to do something to help, as we all¬†watched Emmy lie there helplessly in the hospital bed.

When we finally left the hospital, my grandmother was right there alongside us. I remember her saying, “So Emmy doesn’t have Williams syndrome anymore, right??” She thought the heart surgery might have cured her of Williams syndrome. My grandmother was born in another country and spoke with a heavy French accent. She often searched for the English version of a word and, therefore, didn’t fully understand the complexities of Williams syndrome. But she thought Emmy was absolutely amazing. And she loved, loved, loved reading my blog.

My aunt, Eva, had been asking me to write a blog post for the past couple months, but I was so busy with the kids and their schools and activities… I never got around to it.

Sitting by her hospital bed on May 14, the day she died, I told her that I would get back to writing. So here I am…back at it. I know she would have loved to read this. She would have loved to see any picture of Emmy, even if I just wrote “BLAH BLAH BLAH” below it. Like my grandmother, Eva¬†was a big supporter of Williams syndrome. It’s interesting to see how far everyone in my family has come from my¬†initial reveal of, “I have big news. Emmy has something called Williams syndrome…” to understanding more of what it is, seeing Emmy for who she is, and learning more about Williams syndrome every day. I’m so sad that two of my biggest supporters, my grandmother and aunt, won’t get to read this post. I hope they are looking down on us — and Emmy as she grows.

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School

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School is hard. We’re about halfway through the year in Kindergarten, and it’s tough. I knew it was going to be difficult. I heard many of the older kids at past Williams Syndrome Conventions saying they hated school. That always broke my heart because of the way in which they said it. Sure, everyone “hates” school. Every kid would much prefer to stay home and watch tv all day. But these kids hated it because of how hard it was for them — and sometimes because of how their teachers reacted to them. They didn’t necessarily want to sit home and watch tv all day. They just wanted to be able to do their schoolwork without a major struggle.

When you perceive things differently because of your genetic makeup, schoolwork is a struggle.

We have a couple challenges on our plate right now. The first is the visuo-spatial difficulties that we’d always heard about regarding Williams syndrome. This blog, written by a Williams syndrome mom and Science teacher, explains it nicely: http://understandingwilliamssyndrome.blogspot.com/2012/04/visuo-spatial-difficulties-and-how-they.html

We’ve seen Emmy struggle in the past with visuo-spatial relationships. But now that she has to put pencil to paper every day, I see how difficult it is for her to even write her name. Imagine if you practiced writing your name every day for a year, and it was still difficult for you. Imagine if you were asked to write “E,” “M,” “M,” “Y” on a lined sheet of paper, and no matter how hard you tried, you couldn’t write those darn letters on those lines. For an “E,” you have to first start with a straight line down, and that is often a wobbly line, but it’s getting better. Now, you have to do those three little lines to finish your “E,” and it’s absolute torture. You can’t get the small lines to follow the lines of the paper. In Kindergarten, those are called the sky line, the plane line, and the grass line. You have to draw your three little lines exactly ON the sky line, plane line, and grass line. Yours are often above or below, and you spend a long time trying to fix that. Now that’s just the “E.” That takes a good five minutes to work through, and it still isn’t properly lined up. On to the “M” and so forth…

Now imagine that this skill comes easily to all the other kids, and they’re flying through name writing and onto sentence writing and onto story writing…and you’re still back trying to get that darn “E” on the page.

So our second challenge is the pace of the work. The other kids are easily off to the races but, because of Emmy’s challenges it takes us a long time to do the tasks that take other kids two¬†minutes. So homework usually takes over an hour and a half, and that’s after a full school day.

At the last Williams Syndrome Convention, we had an awesome keynote speaker named Paul Daugherty. He is the father of a young woman with Down syndrome, and he wrote a fantastic memoir called An Uncomplicated Life. I both laughed and¬†cried through the whole book. My favorite chapter is called “Homework.” It’s the most simple¬†chapter title, and¬†it sounds like it would be the most boring read. It is unbelievably beautiful. He writes about the homework struggle, and how it affected both him and his daughter, Jillian. Their relationship could be mirrored by homework. He would go bonkers with frustration at 11:00 pm at night when they were still working on spelling the same one word that they had been working on for hours. And she would keep her positive spirit and persist, even though it was tough for her.

I read that chapter over the summer before Emmy started Kindergarten. In a way, I am living it now. I’m not going bonkers at 11:00 pm, thank goodness! Hopefully that won’t start until the high school years. But I am aware of the fact that we drill the same sight words every night, and even though Emmy seems to know the word “the” on Monday, she won’t know it on Tuesday.

But like Jillian, Emmy’s positive persistence is a beautiful thing. She sits down at the kitchen table every day with me and does her homework with no complaints. None. She ¬†just¬†smiles her way through it even though it’s so freaking hard for her. I see her fingers struggling to write those lines. I see¬†her steadfast concentration when she stares at the sight words. And I know that none of this is easy.

It’s amazing that Emmy is willing to try and that she’s persistent. If this were me, struggling¬†to write¬†my name on the lines after a year of trying, I might have broken my pencil in half and said, “You know what? SCREW THIS!”

Not Emmy. She smiles and often cheers herself on. When she claims a tiny accomplishment, she’ll say, “I did it!” And if I try to gently feed her a sight word, she’ll say, “I can do it myself.” If¬†she gets a sight word right, she shrieks for joy and hugs me tightly around my neck.

We have other challenges too. Math is a doozy… Yikes. Math makes me want to pull the covers over my head and go back to bed. I have my own issues with math, so I’m having a hard time teaching math to someone who also struggles with number sense — but in different ways. Emmy doesn’t see what I see when I place counting bears on a table. I can figure out how to help her with writing and reading, but I still don’t have my math strategy down. I have to ponder that one.

But we do have some major accomplishments too! Emmy is reading! She’s really impressed me with her reading skills, and I’m seeing a lot of nice gains in that area.

And even though I’ve highlighted some challenges, Emmy has progressed tremendously since the beginning of the year. She is making huge, huge strides, albeit at a slower pace than the other kids in the class. But the progress is very much there.

So the last challenge falls on me, her mom. I have to keep my patience and a positive attitude. I am actually a pretty patient person, which is helpful. I try not to lose my cool too often. But positivity isn’t necessarily my strong suit. I can get discouraged. I can see the huge mountain ahead instead of the little, AWESOME gains we’ve already made. I can get into a spin cycle in my head about what my dreams and goals are for Emmy and whether we’re on track.

I really don’t want her to hate school. I’m wondering if there are any older kids with Williams syndrome who like school?? I’m hoping so? I’m trying my hardest not to put too much pressure on Emmy so that it makes her hate school, while also balancing the need for her to still do the work and make progress. That’s a tricky balancing¬†act. I’m working on it!

Ok, now for some other updates. Thank you for all your support during Theo’s hospital stay a while back. I think we have FINALLY figured out what is going on with him. He has enlarged adenoids and tonsils. He also possibly has asthma, though he’s too young for that diagnosis yet. For now, he’s on medicine that shrinks his adenoids, and he has been doing MUCH better. He has much less drooling and much less mucus in his throat. He’s like a different kid. But he’s a boy, so he still runs around like a maniac. ūüôā

And Charlotte is doing great. She loves school, sports, dance, and especially art. She’s a sweet kid and a very helpful big sister.

So here we are! (Well, except for me because I’m always behind the camera.) Happy January!

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Doing All Of The Things

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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

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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.

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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.

Tomorrow is the Day

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Thank you, everyone, for your sweet words and wishes. I can’t believe that we’re on the Eve of another potential surgery. I say “potential” because we’re scheduled for a bronchoscopy, which is more of a look-see. But if the doctor sees something minor that he can fix, he’ll do it. The doctor won’t know what he’s dealing with until he performs the procedure, so we’re kind of on pins and needles in that respect.

As such, it’s being treated as a surgery. The document I have in front of me with the details for tomorrow reads across the top: “SURGERY 11/10/15.”¬†The sheet also tells me that Theo can’t eat or drink past midnight. We have to be at the hospital at 8:00 am, and the procedure is scheduled to begin at 9:30 am.

In the photo above, I put that shirt on Theo 5 minutes before I snapped the picture. Can you see how his shirt is covered in drool? Also, you may be able to see the excessive saliva in his mouth. This is more than just teething or other typical baby stuff.

I’m incredibly depressed about the procedure tomorrow, but I’m also thankful that we may finally get to the bottom of this. I’ve been so worried about him. Lately, he’s been waking during the night, coughing on the mucus in his throat.

I’ve been going through the whole “It’s not fair!” cycle, and I’m trying to get out of my own head and just accept it. I¬†stood in front of my bookshelf for a while (I love books and probably have way too many…), trying to find something to read that would pull me out of myself. I found Byron Katie’s Loving What Is and got into bed, prepared to read. What fell out of the book was a printed list of high-risk obstetricians from our¬†insurance company. My husband¬†had written some notes at the top because he was the one who printed the list for me…when I was newly pregnant with Theo. The pregnancy was high-risk because I had a¬†uterus with a “thin window,” as they say, and I needed to be monitored. I guess I turned towards this book when I was worried about my¬†pregnancy.

And now that we made it through that stressful pregnancy, we have a sweet little guy with an adorable laugh. Truly, his laugh is awesome. More of a chuckle, really.

So here’s what Byron Katie says in her book: “If you want reality to be different than it is, you might as well try to teach a cat to bark. You can try and try, and in the end the cat will look up at you and say, ‘Meow.’ Wanting reality to be different than it is is hopeless. You can spend the rest of your life trying to teach a cat to bark.”

I want reality to be different. I don’t want Theo to have this problem or ANY problem. I want many things that aren’t part of reality. And the realization that I have no control over reality is PAINFUL. It actually hurts to¬†sit in certain feelings that belong purely to reality and are not up for manipulation or debate. But I guess I have to accept that I’m not going to teach a cat to bark (although I’m sure I could find something on YouTube…).

Thank you so much for thinking of us. I really appreciate it. And I’ll keep you posted when we know more. ¬†‚̧

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Here We Go

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I’ve been wanting to post about this for a while, but I’m so stinking¬†depressed about it that it’s hard to find the words. I also have been trying, unsuccessfully, to put it out of my mind and not obsess. (But I’ve been obsessing.)

It¬†looks like Theo¬†will have to go to the hospital for¬†a bronchoscopy on November 10. When Theo was about 5 months old, I noticed a wheezing sound when he breathes. At the time, it was diagnosed as laryngomalacia, which is basically a floppy larynx and no big deal. It happens to some kids and, as they get older, the problem resolves itself. Sure enough, when Theo was about 8 months old, it seemed to go away. I didn’t hear the wheezing anymore, and the doctor confirmed that it had resolved.

Then this past August, when he was 14 months old, he developed a much different¬†sound when he breathes. It’s quite loud, and it sounds like he has mucus in his throat — like a gurgling or purring. At first, we weren’t worried. We figured it was a cold. Then it didn’t go away. And it got louder. We’ve seen several Ear, Nose, and Throat doctors. We treated him for allergies (both seasonal and food), asthma, and reflux. None of those treatments had any impact on the sound. Plus, one of the treatments involved medicine that seemed to make everything worse. He had so much mucus and saliva in his mouth that he couldn’t even swallow.

So¬†here we are. Theo is¬†16 months old,¬†and the sound is as loud as ever. Furthermore, he has started occasionally choking on his food and, when he coughs, it sounds as though he’s fighting a lot of¬†mucus. (Although this mucus has never come up.) But the Ear, Nose, and Throat doctor confirmed it was there by looking down his throat.

Well, now the ENT has to look further to get to the root of the problem, and the only way he can do that is through a bronchoscopy, which means we have to take Theo to the hospital and put him to sleep with anesthesia. Which reminds me of the last time we put one of our children to sleep with anesthesia, and all hell broke loose. (I can’t even bear to go back and look at the posts right now to link to them. But, in May 2013, Emmy had heart surgery and went into cardiac arrest afterwards.)

I’ve been trying to avoid the bronchoscopy. I’ve been trying so hard to solve this problem without any invasive procedures. But it doesn’t seem like that’s going to happen. My amateurish investigative work isn’t getting us anywhere.

The two prevailing theories right now are that (1) Theo might have scarring in his throat or a narrowing in his airway from when he was intubated in the NICU (2) Theo may have a congenital anomaly called a “vascular ring.” Both are pretty hardcore.

Keep in mind that Theo seems fine. He’s growing nicely. He’s talking and laughing and dancing and having fun. He has all the energy in the world, and he actually doesn’t seem at all bothered by this throat issue. Even when he chokes or coughs, he just keeps going. (The rest of us practically have a heart attack every time…)

So what can I say? It stinks. I’m trying my darndest to be positive. But it stinks. And I’m super bummed that we have to go down this road. I just want everything to be all sunshine and roses all the time, you know?? Especially when it comes to my kids.

Well, our pre-op appointment is on November 3.

So here we go…