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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