Why Words Matter

IMG_0600

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.

IMG_0580

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.

IMG_0202

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. 🙂

IMG_1274

Two Year Blogiversary

IMG_1077

Happy Green Bagel morning! 🙂 I got an email from a friend this morning, which reminded me that my blog is two years old. Well, there was lots of talk about green bagels this morning, but we didn’t get them because the kids were having them at school.

I haven’t posted in a while, and there are many reasons for that, but I’ll give you a few. Any time that I had to myself went out the window when we moved. Emmy used to be in an all-day preschool, but now she’s home at 11:00 am. Charlotte is home from school earlier too. And I have Theo all day. And Theo likes attention! So when I do get a free second, I try and catch up on my ridiculous pile of laundry.

I’ve had a couple emails from people checking in on us, which put a smile on my face. It’s so nice to know that others are thinking about us. I’ve also gotten some emails from people whose children have been newly diagnosed, which reminds me why I started this blog in the first place. I wanted to show the positive side of Williams syndrome for anyone who is newly diagnosed.

And, as time has gone on, the positives just keep growing and growing. Emmy’s personality is awesome. At 3.5 years old, she wakes up with a big smile on her face every single morning. She is both funny and sweet. When Theo cries, she says, “What’s wrong, sweetheart?” or “Don’t cry, honey.” (Dan and I don’t say “sweetheart” or “honey,” so I have no idea where she picked those words up, but it’s adorable!)

She is also persistent and determined. I signed her up for a gymnastics class and, though she can’t easily do what the other kids are doing, she tries her hardest. If she falls, she gets right back up. She is absolutely driven to do what everyone else does. If I were to tell her that she couldn’t do something because of her small stature or low muscle tone, she would be devastated. So we continue to sign her up for things that are tough for her. We don’t have to push her. She pushes herself. I adore that quality within her because I don’t have that same determination. If I fail at something, I usually bow out. Emmy teaches me to try, try, try again.

Charlotte has turned into an artist:

IMG_1078

She is constantly creating. One of the things I love about our new house is that we turned a possible playroom into a craft room. It still ends up full of toys, but the shelves are lined with paper, stickers, and paint. I love doing crafty stuff, but I rarely have time right now. So I live vicariously through Charlotte. She reminds me so much of myself.

She still misses our old town, and she’s had the toughest time with the transition because she had to leave her close friends and teachers behind. I keep waiting for the day that she’s going to say she loves it here. I hope it will come…

And Theo is into everything!

IMG_1076

He’s 9 months old and very close to crawling. He puts everything in his mouth, and I have to watch him like a hawk all day. He laughs easily, and he gives wonderful snuggles. He’s constantly waited on by his sisters, especially Emmy who checks on him every five minutes. She doesn’t let him out of her sight!

Thanks for thinking of us, and I hope you enjoy your Green Bagel Morning. 🙂

Change

IMG_0629

A couple months ago, we were driving back from visiting my sister, who lives near a beach. While the kids slept in the backseat, Dan and I talked about how relaxing it felt to be by the water for a few days. For years, we’d been saying that we’d like to move near a beach. But it just seemed so impractical. We had built a life elsewhere. A move would be difficult, especially with three little kids.

Finally, one of us said, “You know what? Let’s just do it.”

But we had said this many times before…and then life happened…and we pushed that dream aside. However, this time seemed different. It felt like we were finally serious. Within a few days of getting home, Dan called a realtor about putting our house on the market, and we started to research houses in a town near the beach.

With the wheels actually in motion, my initial excitement turned into nervousness. I had fears — lots of them! We would have to take the girls out of a school that they love. We would be moving farther away from family. We would have to change doctors and dentists. We would have to leave Emmy’s wonderful music therapist. We would have to work with a new school system to arrange physical, occupational, and speech therapy. Overall, we would be leaving everything that was familiar.

One day, when we were scheduled to meet with our realtor, I broached my fears to Dan. “Is this really a good idea? I feel like I know this area so well. I’m nervous about making such a big change.”

He reassured me that everything would work out. And I realized then that if I always listen to my fearful side, I would never do anything. I would stay put exactly as I am.

I actually had a lot of trepidation about starting this blog a year and a half ago. I knew I wanted my blog to be very personal and honest, so I worried about the reaction that I would get. I worried about “putting my business out there” for everyone to see. And, most importantly, I worried about posting pictures of my children.

I really hemmed and hawed on the pictures issue. Should I just take pictures of the kids from behind? Did I really want to expose their faces? What about the creeps out there? The thing that tipped the scales for me was that Williams syndrome can be a very overwhelming and scary diagnosis. I wanted to show newly diagnosed parents what Emmy looks like — how beautiful and sweet she is. I felt like you might be able to get a more accurate impression of who Emmy is from seeing her face. See how Williams syndrome isn’t as scary as it sounds? 🙂

IMG_9795

So I pushed past all of those fears to start this blog, and I’m happy that I did! I love hearing from people who find my blog. I love showing what Williams syndrome is, and I love writing about how Emmy has changed all of our lives for the better.

I didn’t let fear hold me back with the blog, and I wasn’t going to let it hold me back with the move either.

I emailed a realtor who was familiar with a town that we liked and wrote: “We’d like to move, and we’d like to do it quickly. We have three little kids and the holidays are coming up, so we want to just go for it sooner rather than later. Can you help us?” We lucked out, and she was awesome. Soon, all of the pieces fell into place for both the selling and buying of our old and new houses. With momentum on our side, Dan and I moved at warped speed to move before the holidays.

And we did! We’re in the new house in a brand new town near the beach!

We have floor to ceiling boxes, and we still have a ton of unpacking and rearranging to do. But we’re here!!

I think that our biggest concern this whole time was for Charlotte. We were pulling her out of a Kindergarten that she absolutely loves and transferring her to a bigger school with brand new teachers and friends. My own family moved when I was going into sixth grade, and I have to tell you that I was TRAUMATIZED. The memory of the first day of school still haunts me to this day. I can feel my palms getting sweaty just THINKING about it. Ugh. So we felt terrible about changing Charlotte’s comfortable surroundings.

But on the first day in her new school (this past Monday), a little girl brought in a picture frame that she made over the weekend for Charlotte! I couldn’t believe it. Several other kids brought in cards that said things like: “Charlotte — welcome to our school.” Those kind gestures helped her so very much on what would’ve been a difficult first day. I vowed that when I hear there’s a new kid coming to town, I’m going to encourage my children to make cards for him/her. It was really, really sweet.

So the first full week of school is in the books! Charlotte is starting to make friends and is really enjoying her classes, and Emmy fit in right away. Emmy goes to the preschool program and, if you read about the “Williams syndrome personality,” you’ll see why she’s so friendly and outgoing.

So there we go. Lots of changes! But through all of this, I’ve learned that when I move past fear to take a chance, I will eventually embrace change. 

IMG_2343

Little Reminders

IMG_8926

Everyone tells you not to compare.

If you have a child with special needs, you tend to compare that child’s progress to her siblings. Because as much as people tell you not to compare, you can’t turn your brain to the *off* position. If you could turn your brain off, you’d stop thinking about the Halloween candy in the kitchen. Or you’d stop thinking about the phone call you have to make by Friday. Or you’d stop thinking about the next chapter in your life.

But you can’t just *stop* thinking. Your brain turns and moves, turns and moves–as much as you might want to quiet your thoughts. I’ve actually tried meditation many times, and I’ve gotten decently good at it. But even if I sit down to quiet my thoughts for 20 minutes, only 3 minutes of that will be successful. For the other 17 minutes, my mind is still on overdrive.

So if people tell me not to compare my children, it’s impossible because I can’t just shut down my thoughts.

But I want to explain that comparison isn’t a bad thing!

I used to beat myself up about it. I would think: Hmmm…Emmy’s not rolling over yet. I’m pretty sure Charlotte was rolling over by now.

Or I used to think: Was Charlotte able to cross midline this early? Emmy isn’t doing it yet. (Midline = a term I never thought I would have to learn. Now, I know it well.)

And when people would yell at me to stop comparing, I would criticize myself for doing so. What’s wrong with me? Why can’t I stop?! Yet, I was unable. So let me rephrase…

I was thinking.

It’s ok to think, right? Everybody does it. And it doesn’t sound as bad as “comparing.”

When I was thinking about Emmy’s progress in relation to Charlotte, I was simply *thinking.* I love, love, love, love, love Emmy dearly. I think she is amazing and smart and funny and gorgeous and sweet. I feel the same about Charlotte and now, Theo. But my kids are different. They do things on different schedules. They have different personalities. They progress differently. It’s not that one who moves more quickly is better. It’s that one who moves more quickly is different.

When people use the term “compare,” it sounds as though one is better than the other. That’s not true. They’re just different.

And I think it’s ok to observe differences. I think parents should give themselves permission to see the ways in which their children are unique.

There is a parent who has twins with Williams syndrome. She commented that she has a hard time not comparing them. Can you even imagine having twins and being told not to compare? Isn’t that the most impossible task in the world? I mean, how do you NOT compare?

But please understand that these comparisons aren’t negative. They’re just thoughts…observations. As human beings, we have thoughts. And, unless we’re going to meditate 24-7, it’s impossible to shut our brains off.

Now, of course, if you notice that your comparisons are turning negative, that’s a different story. “She’s not crossing midline yet” is different from “Why can’t she cross midline yet when her brother did it so perfectly at 1 month old?” Of course, that’s totally different. And, yes, that would be negative.

But most parents I know are proud of even the smallest accomplishment. Their comparisons aren’t negative. Their comparisons don’t affect their LOVE. These are just thoughts…passing thoughts. Love is constant.

So if you have one of those passing thoughts, don’t beat yourself up (as I did for so long). It’s ok to see differences. They’re just little reminders that your children are unique and special in their own ways.

As you can see, my girls dressed very differently for Halloween. Charlotte knew for months that she wanted to be princess Elsa. That’s it–do not pass go. Emmy, on the other hand, isn’t into princesses. She has always been obsessed with monsters. First, our red, furry friend, Elmo. And now, blue Sulley from Monsters Inc.

I love that she loves monsters!! It’s different. It’s cute. It shows a side to her personality–a fun and daring side. She’s rarely afraid. In fact, when Charlotte didn’t want to stick her hand in the “eyeball” soup at Halloween, Emmy dove right in–grabbing prizes for both of them.

Of course I had the passing thought: It’s funny that Emmy is so into monsters, while Charlotte never was.

But it’s just that…a thought.

IMG_8925

Head Above Water

IMG_9466

My only goal right now is to keep my head above water. This little guy is cute but, boy, can he scream! He’s colicky and is usually crying from about 4:00 pm-11:00 pm. Every single day. He looks calm in this picture, right? He’s good at making you think that everything is going to go smoothly and then…he turns.

I finally broke down and called the pediatrician. I suspected it was colic, so I was trying to be cool, calm, and collected about the whole thing and handle it on my own (with my very helpful husband, of course). I really didn’t want to go to the doctor. I spend so much time in doctors’ offices because of Emmy. It’s exhausting. And the past 9 months of pregnancy have felt like one long, never-ending doctor’s appointment. I just wanted a break.

But one day he screamed so much that he really freaked me out, and I brought him in. Our usual pediatrician didn’t have a free appointment, so I saw another doctor in the practice. Theo was lying on the examining table — screaming, screaming, screaming. The doctor turned him over again and again. He spent a good deal of time looking him over and futzing with him. Despite the screaming, the doctor was totally unphased. He just kept smiling and then, finally, he exclaimed, “Gosh, is he cute!! He looks great, mom.”

Looks great??? I was shocked. I expected some kind of scary diagnosis.

The truth is that it’s hard not to worry. When we found out that Emmy has Williams syndrome, it came totally out of the blue. It was like being hit by a train. I had never thought twice about genetics and, from that day onwards, I know more about genes and chromosomes and syndromes than I ever thought possible. (And I still don’t know even a smidgen of what’s out there!)

But I felt like I got tossed into a world that was no longer carefree. Suddenly, I knew more than I wanted to know. One thing I know is that syndromes can come in the form of pieces to a puzzle. What I mean by that is: you notice one thing, then you notice another thing, then another thing… All of these little things seem random. “Oh, her pinky turns in.” “She has a really big smile.” “She has a heart murmur.” They seem like random little things. And maybe they are. But in Emmy’s case, they culminated in one very big thing — a diagnosis of Williams syndrome.

And now, with Theo, I know too much. If he were my first child, I probably wouldn’t bat an eye at the fact that he held his thumb tightly in his fist in the beginning, that he has major gastrointestinal troubles; that he seems to be developing a rash. I grilled the doctor. I brought my list of symptoms. And I said, “I’m nervous because, with my daughter, there were all kinds of little things that were pieces to a puzzle.”

“I know,” he replied. “But he looks great. Really great.”

I’m a member of various groups on Facebook for parents of kids with Williams syndrome. And a common question is: I’d like to have another child, but I’m scared.

Because even though you love your child with Williams syndrome DEARLY and wouldn’t change him/her for the world, you know too much. You know that life comes with surprises. And you’d prefer not to get another huge shock, especially when it involves the most precious things in your life — your children.

So I left the doctor’s office with a diagnosis of colic. But I can’t promise that I won’t worry. And I can’t promise that I won’t examine every little thing about Theo. And I can’t promise that the wheels in my mind won’t turn endlessly.

But I can promise that I will try and relax and just snuggle and appreciate this adorable little boy, with whom Emmy is completely obsessed.

She’ll ask me, “I kiss him?”

And when I say “sure,” she leans over and gives him a smooch. Again and again and again.

Then she flashes me a huge smile and proclaims, “He so cute!”

And Charlotte strokes his cheek and says, “He’s adooooooorable.”

We all can’t wait until his tummy troubles stop making him so miserable. The doctor tells me that colic should resolve by three months. In the meantime, you know what I’ll be doing tonight from 4:00 pm-11:00 pm…

Blog Hop: My Writing Process

BlogHop

I was in the middle of this post two weeks ago when I unexpectedly dashed to the hospital to have a baby–who is doing great, by the way! Gosh, he certainly gave us quite a scare.

So let’s try this again…

I’m happy to take part in the “My Writing Process” Blog Hop this week. I was invited by Amy Reade, which is one of the best names I’ve ever heard for a writer!

Amy’s blog, called Reade and Write (again, love the title), can be found at http://amreade.wordpress.com. Her first novel, Secrets of Hallstead House, will be published in July 2014, and she has two more novels on the way. One of the things I like best about Amy’s writing is something that she mentions on her own Blog Hop: “My books have a strong sense of place, so hopefully my readers will want to visit the places I write about.” She does a lovely job of painting a picture for the readers, and I definitely find myself wanting to take a trip to the places she describes.

For this Blog Hop, I’ll answer a few questions about my writing process and then introduce you to three other writers, who will pass the Blog Hop along next Monday.

The questions:

1. What am I working on?

I’m working on a memoir about my first few years as a mom to a daughter with special needs. And I just helped edit a fantastic anthology written by parents, family, and friends of people who have Williams syndrome. Here’s a link to the book on Amazon. And here’s a link to the book on the Williams Syndrome Association’s online store. The book is inspiring, heart-warming, funny, and informative. I think that everyone will enjoy reading this book, whether his/her child has Williams syndrome or not. But I also think it will be especially helpful to those parents whose children are newly diagnosed. It gives you a glimpse into possibilities for the future and also makes it clear that you are not on this road alone. I’ve known about Emmy’s diagnosis for almost three years, and I still learned a lot from the stories in this book. I highly recommend reading it!

2. How does my work differ from others of its genre?

My writing falls into the category of memoir/personal essay. I’ve actually been writing memoir for a really long time–well before I had children. For some reason, I can be brutally honest in my writing, something that can be more difficult for me in conversation because I’m kind of shy. But when I write, it’s all out there on the page. Likewise, my favorite memoirs are the unflinchingly honest ones. (And I read A LOT of memoirs.) I don’t respond to a book as much when I can tell that someone is hiding behind his/her words.

3. Why do I write what I do?

If I don’t write about my experiences, they sit beneath the surface of my skin and drive me bonkers. I’ve always felt compelled to just get it out. And, perhaps more importantly, I like that my personal writing builds a connection to others and sometimes offers them advice, comfort, and support.

4. How does my writing process work?

Wellllll, I commit to turning in a draft of a chapter. I put it on my calendar and stare at the date for a while. I procrastinate on the actual writing for a long time, while still obsessively thinking about the chapter topic–turning it over and over in my mind. And then, FINALLY, I find a couple hours before the deadline and pound it out. Very healthy process. 🙂

And now I’m sending the Blog Hop along to these talented writers:

  • Eva Lesko Natiello is a native New Yorker who wrote her debut domestic thriller, THE MEMORY BOX, as a result of relocating to the New Jersey suburbs with her husband and two children. THE MEMORY BOX is a Houston Writers Guild 2014 Manuscript award winner; it will be released June 2014. Eva is a self-proclaimed curious observationist whose oddball musings can be read on evanatiello.com. She improvs songs as a way to dialogue with her kids. They find it infrequently entertaining. You can also follow her on Facebook and Twitter.  
  • Lillian Duggan is a creative writer, mom, wife, wannabe world traveler, and freelance editorial professional and translator. Her short story, “The Orchid,” was published by www.everydayfiction.com in August of 2013. She’s currently working (slowly…) on her first novel. On her blog, My Ideal World, she writes about her efforts to achieve her goals and make her dreams come true one step at a time while raising two children (www.myidealworldblog.com).
  • Rosanne Kurstedt has a Ph.D. in education, teaches at Fordham University and William Patterson University, and is the author of And I Thought About You (illustrated by Lisa Carletta-Vietes), an honorable mention recipient at the New England Book Festival, New York Book Festival, and Paris Book Festival. She was also the recipient of a 2013 Barbara Karlin Grant Letter of Commendation. In addition, Rosanne writes professional books for teachers, including Teaching Writing With Picture Books as Models (Scholastic, 2000). You can visit Rosanne at her website, at her blog, Kaleidoscope, on Facebook, and on Twitter too! @rlkurstedt

And here’s Theo…awww…

IMG_8874

He’s Home!!

Theo

Thanks for all of your well wishes and words of support! They mean so much! Theo came home yesterday. He spent 8 days in the NICU which, coincidentally, was exactly the same amount of time as Emmy when she was born. Theo had RDS (Respiratory Distress Syndrome) and PPHN (Persistent Pulmonary Hypertension of the Newborn). Emmy, too, had PPHN. Isn’t that bizarre??

It’s probably obvious to parents of children with Williams syndrome that Theo doesn’t have that diagnosis as well. (You start to become an expert at identifying the facial characteristics.) But I can’t get over the fact that both kids had PPHN and ended up in the NICU. (By the way, Charlotte was healthy as an ox when she came out. All 3 kids were full-term C-sections.)

Over the past few years, I’ve become fascinated by genetics. If I had more time, I would study it.

For now, I’m tired and totally spacey. (I can barely put a sentence together. I keep saying to Dan, “Can you get that thing? You know that thing? It’s on the other thing?”) But I am also THRILLED to have Theo HOME!

Oh and I am so thankful for NICU nurses. PICU nurses too. Labor and Delivery nurses too. NURSES IN GENERAL!!!! They took such good care of all of us. Thank you!!

Here are pictures of the girls holding their baby brother for the first time. Charlotte was talking in a sweet baby voice: “Hello, little Theo. Look at your little feetsies!” And Emmy wanted desperately to hug him, kiss him, and hold his hand. She kept saying, “My turn!”

And Theo looks totally different. He lost a bit of weight. We’ll see what he looks like when he fills out more.

Charlotte

Emmy

Happy to be home!