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. 🙂

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.

A New Twist

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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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

And then she’ll say, “Oops! Sorry!”

She’s so cute.

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

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

A Story About Sisters

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Charlotte wrote a “How To” story in school. The topic she chose was “How to Help Your Sister.” For her dedication in the beginning, she wrote, “I dedicate this book to Mommy because my Mommy taught me how to help my sister.” She wrote about helping her sister down the stairs, helping her get dressed, and helping her brush her hair.

My first thought was: This is the sweetest thing I have ever seen in the history of the world!

My second thought was: Have I put too much of a burden on Charlotte?

I felt the #1 Mom feeling, which is guilt. Am I not doing this right? My original intent was that I didn’t want Charlotte to feel like she always has to help Emmy because I didn’t want her to resent her sister later in life. (Though someone commented on my blog once that she, as an adult, loves helping her sister with Williams syndrome and that she would do anything for her.)

I just don’t want Charlotte to look back on her life and say, “You know, my mom really screwed things up because she made me help my sister too much, and now I have the following issues…”

But then I thought…

Wait a minute. I helped my own sister! I was always looking out for her. I’m sure my sister felt like she had 3 parents because I was always putting my nose into everything. I remember being in a grocery store with my mom and my sister and, while my mom put in her order at the deli counter, I would chase my sister around the grocery store and call back over my shoulder, “You need to watch her!!” Of course, my mom had an eye on her the whole time, but she found it hilarious that I played the role of guardian (while chastising her for it…).

My sister and I recently found some old videotapes of my 13th birthday party, and we had so much fun laughing at ourselves. The grainy footage showed the party in my house with music blasting. Our living room was crowded with friends and even a boy that I liked. But while I was surrounded by people my own age, I danced with my 7 year old sister for hours. There we were in the middle of the circle–spinning around and laughing. We both commented on it. “Wow, I basically ignored everyone else and spent the party with you!”

Growing up, I included my sister in everything. “This is my little sister!” I would call out to anyone who would listen. I always had a protective arm around her, and I loved doling out advice. When I finally got my driver’s license, we continued to spend all of our free time together–out and about. And when I got to college, I brought my little sister to parties and watched her like a hawk (reminiscent of days in the grocery store as kids).

I don’t remember if I helped her down stairs or if I brushed her hair, like Charlotte does with Emmy. But I know that I’ve helped my sister in other ways–just as she has helped me. It’s always been a give and take. (My little sister has even called a boy on my behalf, to ask him to a dance. I was 15 and she was 9. At the time, my shyness was beyond embarrassing. Now, I can laugh about it.)

With Charlotte and Emmy, I see that give and take. Some of Emmy’s greatest strengths come from her reliable company. If Charlotte needs a hug, Emmy is right there. When Charlotte needs a laugh, Emmy is happy to provide it. When we moved to a new town a few months ago and didn’t know anybody, Emmy stepped into the role of “steadfast companion” to Charlotte. They spent all of their free time together.

The other day, I found one of Emmy’s books in Charlotte’s room. I asked, “Did Emmy leave this here?” and Charlotte responded by filling me in on their morning routine.

Every morning, Emmy wakes up first. She grabs a book from her nightstand and walks over to Charlotte’s room. She knocks softly on the door and enters. Charlotte is still in bed–sometimes sleeping. The two girls don’t say a word. Emmy sits on the floor of Charlotte’s room with her book and leafs through it, waiting for her sister to get out of bed.

I said, “You guys don’t talk at all?”

Charlotte replied, “No. She just likes to be in here with me.”

Their bond is strong. There’s a give and take. For now, I think it’s equal. What role Charlotte will take on in the future remains to be seen. I don’t want her to feel burdened, and I don’t want her to resent her sister. But for everything I’ve done for my sister and for all the times I’ve been there for her, I feel zero burden or resentment. Yes, the circumstances are different. But from what I see in Charlotte and Emmy, that special bond is exactly the same.

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