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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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.

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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The Time That I Freaked Out

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It’s very bizarre to fill out medical paperwork on behalf of Emmy. Since we moved a couple months ago, we’ve entered a new school system, and we’ve had to find new doctors and dentists. We’ve also signed up for extracurricular activities, like gymnastics. This all comes with a lot of paperwork…and a lot of questions.

First, the questions ask for me to go through her health history. Gosh, this is still tough for me. I have trouble rehashing her heart surgery in 2013 followed by 2 cardiac arrests and a week on life support. She also has a lasting problem from that event, which makes me sad to think about. And then, of course, there’s the fact that she has a genetic condition. And, while I’ve completely accepted and embraced the fact that she has Williams syndrome, sometimes just thinking about that first year can bring back memories of complete uncertainty, confusion, stress, and exhaustion. Trying to grasp what Williams syndrome meant for our child along with setting up doctors’ appointments alongside Early Intervention services was just EXHAUSTING.

Next, after filling out her health history, I’ll no doubt see the following question which is phrased in many ways but most commonly: “Is your child healthy?”

I don’t even know how to answer this question. I mean, yes, Emmy has both Williams syndrome and a lasting issue from her cardiac arrests. But she certainly SEEMS healthy. She smiles a lot, runs around all day, expresses her MANY opinions loudly, and pushes herself in everything she does.

I don’t even know how to define “healthy” when it comes to Emmy. On a day to day basis, she seems healthy to me, even after everything we’ve been through.

Then we’ll have moments that will make me positively freak out.

A few days ago, Emmy ate some mango (her favorite food). Then a couple hours later, she said, “Mommy, I need some help.” I looked over, and she was practically green. She then threw up twice.

And I got nervous. I’ll tell you why… When we were in the hospital after her heart surgery, one of the nurses told me that when something is wrong with the heart, it often presents itself in the stomach first. So vomiting could be a sign of a heart problem.

I tried to put that thought out of my mind and deal with Emmy’s situation as if it were just a stomach bug. I did all the usual things that I do with stomach bugs–cleaned her up, gave her some water; tucked her in bed for a bit. But she wouldn’t settle. I brought her downstairs and sat with her on my lap, as she clung to me. She was acting differently. She could barely sit up. She kept saying, “Mommy, I’m scared.”

All this after throwing up only twice??

She seemed to be getting worse quickly. She was practically limp in my arms, and then her eyes rolled back for a second.

And that was it. My mind took off racing. What if it is her heart? That was all I needed. Without another thought, I grabbed my purse and put her in the car. She didn’t even have shoes on! I ran back in to get her shoes and then hopped behind the driver’s seat. I turned around to look at her again. Am I overreacting??

“Emmy, are you ok? Should I take you to the hospital, or do you want to go back inside?”

She said weakly, “I want to go to hospital.”

Done. I frantically drove to the hospital, peeking back to check on her along the way. She looked like she was going to pass out. Her eyes were closing, and her head was hanging down. I tried talking to her, but she would only answer in a slight whisper.

“YOU OK, EMMY?? ARE YOU EXCITED ABOUT YOUR BIRTHDAY COMING UP???” I was trying to get her interested in something–anything!

When we got to the ER, I breathed a huge sigh of relief. At last, we were safe. Someone was going to help us.

I practically ran her inside, and rattled off her health history. Emmy seemed to perk up when she noticed the tvs. And then she perked up even more when they brought her some Batman stickers. And then she REALLY perked up when they brought her an ice pop.

And all of a sudden, the child who completely scared the heck out of me an hour prior was sitting up in the hospital bed, happily watching Monsters Inc., eating her ice pop, and chatting up the hospital staff. She looked great. And then the attention started to turn to mom…

“So, mom, did you call the pediatrician?”

Nooooo.

“You didn’t call the pediatrician?”

Noooooooooooo. Honestly, it didn’t even cross my mind to call the pediatrician. After what we’ve been through medically with Emmy, I didn’t want to waste a precious second. In the past, I’ve seen her situation change in, literally, a heartbeat. She’s gone from “ok” to “clinging to life” in the space of a few seconds. The doctors will remind me that it was different back then. She was post-surgery. That was 2 whole years ago. But after living through that…after witnessing what happened to her…I can’t just forget. When I see her start to fade on me, my mind goes back there in a split second, and I freak out.

I think the staff in the ER thought I was a little bonkers. My child threw up twice, and I brought her to the ER. That’s all it takes, apparently, for Mom to freak out. I was told that she’s a healthy child, and I should treat her just like any other. And if she vomits, I shouldn’t worry about her heart.

So it seems the answer is, yes, she’s healthy.

But, seriously, telling me not to worry is like telling someone else to stop breathing. Worrying is what I DO. And I’m quite good at it! I’ve actually perfected it, thank you very much. 🙂

But here’s the deal… I wouldn’t be able to live with myself if there were something seriously wrong with Emmy and I brushed it off as nothing. When I feel like she’s giving me signs, it’s impossible to ignore them. I’ve witnessed things changing in an instant. I know the circumstances were different, and that was all 2 years ago. I know she was post-surgery. But after living through that, I can’t forget it.

So, yes, we may be back to the ER one day, and Emmy may get a repeat of Monsters Inc. and an ice pop. But next time, I’ll call our pediatrician on the way over…

Mrs. Personality

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When I picked Emmy up from gymnastics’ class yesterday, the teacher said, “She has such a great personality. You can’t help but smile around her.”

This is so true.

Emmy wakes up in the morning with a smile on her face and usually says something sweet like “I love toast with jelly!” or “I can’t wait to see Miss J!” (one of her therapists, whom she adores).

Her Speech therapist wrote the following in her journal: “When we finished our crayon box today, Emmy said, ‘I am so, so happy we finished it!’ It was so cute.”

The other day, she made a beeline for her teacher before school and gave her a hug, to which the teacher responded happily, “Hi Emmy! I got my morning hug!”

She’s already started getting report cards from preschool, and the comments make me smile: “Emmy always comes into the therapy room excited and ready to work.”

This has been the gift of Williams syndrome.

I sometimes wonder what she would be like if she didn’t have Williams syndrome. Would she be anywhere near this positive — this smiley? I also wonder if her interests would be different. Right now, she is really into anything that has to do with Halloween (ghosts, monsters, vampires), and she’s into superheroes (particularly Superman). She says in a wavering voice with a sly smile, “I want a spooooooky book.” And she loves the thrill of a “scaaaaary” story.

At this age, Charlotte was dressing as a princess every day. I wonder if Emmy’s interests have anything to do with her diagnosis, or if she would’ve been into monsters and Superman regardless? I’ve seen plenty of kids with WS dress as princesses…

I think about how much of her personality comes from WS, how much of it comes from Emmy, and how much of it comes from our family…

I see that her sense of humor is really starting to come through. And I think…it that us or is that Williams syndrome? Is that my dry sense of humor, or is it Williams syndrome?

People might say, “Why even think about it? It doesn’t matter now because this is who she is!”

The thing about me is that I can’t help but think about it. Curiosity gets the better of me…

From the moment our children are born, isn’t that what we do? “Are those daddy’s eyes or mommy’s?” “She gets her serious side from you…” “Oh look! She’s into crafting! Just like mommy!” “Aww! She has a dimple like daddy!”

Because I’m somebody who likes to organize and who, instinctively, puts things into nice little piles — whether in my mind or on my shelves — I think about Emmy’s traits. Will anything ever be obviously *me*? Will I ever say, “She totally got that from me!” Or will all her traits belong — in a sense — to Williams syndrome?

The truth is that I don’t know who she would’ve been without Williams syndrome. So, of course, it’s a pointless exercise in my mind — one that just raises more questions than answers. But, like I said, I can’t help it…

Regardless of its origin, her awesome personality makes her endearing, and it will serve her well in life. I just love that she’s up for anything. I could say, “Hey, Emmy, you feel like going grocery shopping?” And she’ll clap her hands and say, “Ohh I just love grocery shopping!”

Or my favorite — we went out for sushi the other night, and I ordered a spider roll.

Emmy chimed in joyfully, “I love spiders!!”

You can’t help but smile around her.

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Why Words Matter

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I don’t read baby books anymore. With Charlotte, my first born, I read them diligently. I wanted to know when she would be rolling over, standing, and saying her first words. I didn’t really worry about her meeting those milestones, but I wanted to know what was in store for us. When we found out that Emmy has special needs and then when she started missing her milestones, I couldn’t bear to read the books because they served as constant reminders of the things she wasn’t doing yet.

And, often, it wasn’t so much what they were saying as how they were saying it. I would see gentle reminders that some babies just develop later than others, accompanied by words like “Your baby may be normal!” There were reassurances that even if your baby wasn’t meeting milestones, things would most likely be ok. There were broad ranges for milestones and, as long as your baby fell into those ranges, everything would be fine.

But what if your baby didn’t fall into those ranges?

Then I would see words like “Talk to your pediatrician” or “Contact a doctor.”

So everything seemed happy and cheery when your kid was meeting milestones but, if not, you knew that there was bad news lurking around the corner.

There were two camps. The children that were developing “normally” (this word is used all the time) and the children that weren’t. If you were in the first group, the implication was that things were going swimmingly well! But if you fell into the second group, it sounded like things in your life were about to get pretty miserable.

But I have to say that even though Emmy didn’t meet all of her milestones, our life is far from miserable! She is an absolute joy to be around — milestones be damned. No, she didn’t fall into the “normal” (I hate that word) charts, but she has enriched our lives beyond belief. I could gush about her all day but, to sum it up in a word, she’s awesome.

So now I have an almost-10 month old baby, Theo, and I haven’t opened a baby book.

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After years of physical therapy sessions with Emmy, I know a lot about how children develop — more than I ever dreamed I would know. So I have many of the milestones filed away in my mind and, while I don’t obsess over them, I am aware of them. Theo is on schedule, but I still ended up breaking my rule and did a Google search to find out whether standing comes before or after crawling. And that lead me to a page about walking. And here is what I found:

“Most babies take their first steps sometime between 9 and 12 months and are walking well by the time they’re 14 or 15 months old. Don’t worry if your child takes a little longer, though. Some perfectly normal children don’t walk until they’re 16 or 17 months old.” (Baby Center)

“Some perfectly normal children…”

Isn’t it funny that I haven’t looked in a baby book FOREVER — for this reason alone — and then, on my first search about milestones, these are the words I find?

Why are we calling children “perfectly normal”? And for that matter, what about the children who aren’t deemed “perfectly normal”? What about them?

And then, on the next page, the inevitable dismal line:

“Don’t fret if your child is simply taking her time. But if your child doesn’t stand with support at 12 months, can’t walk at 18 months, or isn’t able to walk steadily at the age of 2 years, bring it up with her doctor.” (Baby Center)

Can’t you just hear the threatening music? So now we know that if things don’t happen by a certain timetable, something scary may be lurking around the corner…

Well, what was lurking around our corner was Williams syndrome! And it hasn’t been bad at all! Her beautiful smile is a Williams syndrome smile, and it lights up our lives every day.

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But, beyond all of that, let’s revisit the words “perfectly normal,” and let’s look at them in terms of a child who is typical.

The first word, “perfect,” is a heavy word. We throw it around a lot, but it is heavy. When you strive for perfection, you will always fail — every, single time. Nobody is perfect. Perfectionists always feel like they’re doing something wrong because, until they’re *absolutely perfect*, nothing is ever right. And because they can never achieve the status of *absolutely perfect*, they end up constantly unsatisfied. So a perfectionist, like myself, is often caught in a trap of inevitable failure. Cheerful, huh? 🙂

Perfectionism can be debilitating. It stops you from doing tasks. If I don’t have time to arrange everything on a shelf perfectly, I won’t even put one thing on the shelf. I had to ask my husband to unpack my boxes (we just moved) and put things on the shelves anywhere he wanted because my desire to have things just so was getting in my own way.

I REALLY try not to use the word “perfect” — especially around kids. However, it’s a word that often pops into my mind. If Charlotte carefully writes her name at the top of her paper, it certainly looks perfect to me! But I don’t want to put that on her. So I choose another word. Or if Emmy puts on her socks the right way, it certainly looks perfect to me! But, again, I pick another word.

And after the word, “perfect,” we have another favorite of mine — “normal.” Someone once said that “normal is a setting on the washing machine.”

What’s the opposite of normal? It’s abnormal. Do we really want to call a child abnormal?

I like to use the word “typical.” As in, “typically children develop like this.” But if they don’t, that’s totally ok too. Everyone is different. That’s what makes life interesting.

I feel like there’s a lot of fear around milestones. You’re either developing “perfectly normally,” or all hell is breaking loose. There’s no grey area. I want to share that, in our case, things went as far from “perfectly normal” as you can get. We are all the way at the other end of “perfectly normal.” But I want to let you know that things over here are pretty great too! In fact, they’re magnificent. 🙂

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