Ready for Spring

Posted on March 21, 2018 by williamssyndromesmile

Right now, I need to wear flip flops. I REALLY need to wear flip flops. Every year I feel the heaviness of winter and swear I’m going to move somewhere warm. I’m cold all the time anyway, so winter is a double whammy. Of course, the kids are excited about playing in the snow and drinking hot chocolate. But I want to pull the covers over my head and hibernate…

As we move from winter to spring, I’m thinking about how many things have changed over the past few years. Charlotte is 8 years old and has really grown into the big sister role. She looks out for Emmy and Theo, and she especially loves playing “teacher” to anyone who will allow it. (When Charlotte gets out her whiteboard and math worksheets on a Saturday morning, Emmy now runs the other direction. But Theo is still game.)

Charlotte has become very curious about what it means to have a disability, and she’s been vocal about the fact that we should embrace people with disabilities. Last year, she wasn’t saying the word “disability.” This year, I hear it a lot. But she doesn’t see it as a bad thing. She sees opportunities to appreciate the differences in everyone. Sometimes I worry that she’s become TOO obsessed with the idea of her sister having a disability and focuses on it too much…but then I think this is just a phase as she learns what it means to have a sibling with Williams syndrome. Charlotte is interested in everything under the sun — sports, acting, voice lessons, piano, art, gymnastics… I’m trying to narrow down the activities to our top 2, though I once read an article that kids don’t find their true interests until they’re in eighth grade. So right now, we’re still swept up in the wave of…everything.

Theo is the dutiful little brother. He seems to still enjoy being the “baby” of the family, even though he’s 3 years old. I think I cater to that a little bit because I know we won’t have any more kids, so I’m snuggling up the last of those baby feelings. Theo is active! I have a tough time keeping up with his energy. He adores Charlotte and Emmy, though all 3 kids have started fighting recently, which is torture to listen to. But, usually, Theo loves having fun with his sisters. He’s always, always thinking about them when they’re at school. He says things like, “Oh! That’s Emmy’s favorite color!” or “Charlotte likes that toy!” He brings a lot of liveliness and laughter into the family.

Emmy is truly a pleasure at 6 years old. Sometimes parents whose children are newly diagnosed find my blog and send me a worried email, and I swear they think I’m bonkers because I always sound so positive about Williams syndrome. They must think I’m living in La La Land. That’s certainly how I felt when Emmy was first diagnosed and I talked to a parent whose child had been living with Williams syndrome for years. The mom was enthusiastic and…dare I say…happy about Williams syndrome, while I felt as though my world was falling down around me. I couldn’t figure out how that parent was okay with the diagnosis and just assumed she was either on “happy pills” or fooling herself.

But here I am today, and I am completely 100% okay with the diagnosis. Emmy wouldn’t be who she is if she didn’t have Williams syndrome, and she is such a delight. The other day, I took Theo to the library, and the librarian came up to me and said, “I have to tell you something. Your daughter is such a doll. My week doesn’t start until I see her.” I hear that a lot about Emmy. She is a very kind and sweet person. Emmy always wants to know how other people are feeling. She is very sensitive. My aunt Eva died last May, and Emmy still brings her up several times a week because she misses her so much.

I also love that Emmy has brought interests into my life that I wouldn’t otherwise have. She is strangely obsessed with everything Halloween and spooky, which is so funny because her favorite color is pink, and she loves to wear dresses and makeup (!!) and is so GIRLIE. But (and this has been going on for a couple years…) she loves vampires, and skeletons, and ghosts, and zombies. I was never much of a fan of Halloween. I could take it or leave it. Now I see a pumpkin in February, and I drop everything. “Where’s Emmy??? I have to show Emmy this pumpkin!” We’ve been to multiple Zombie Walks, something I never thought I would do. And she recently went to a birthday party at a monster glow-in-the-dark mini-golf place, which brought a huge smile to her face. It doesn’t get much better than that! To see her excited about the monsters made ME so happy. I love that she has interests that are unique. I see the world so differently through her eyes, and that makes life more fun.

Of course we have challenges, and nothing is perfect by any means. But that applies to everyone. As I always tell Charlotte, “If I wanted perfection, I would’ve had a robot instead of a child.” (It makes sense in the moment…) My children are so different and, while one child may be the easiest on Monday, he or she is my most challenging on a Tuesday. It really depends on the ebb and flow of life and whatever is going on with them.

So this is us…today.

Tomorrow is the Day

Posted on November 9, 2015 by williamssyndromesmile

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

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

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

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

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

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

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

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

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

Here We Go

Posted on October 29, 2015 by williamssyndromesmile

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

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

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

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

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

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

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

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

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

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

So here we go…

Two Year Blogiversary

Posted on March 17, 2015 by williamssyndromesmile

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:

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!

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. 🙂

Starting Over

Posted on December 22, 2014 by williamssyndromesmile

One week before Emmy’s first birthday, we were headed to Boston for a “vacation.” A mom asked me why we were vacationing in Boston. Did we have family there? Were we going to take the kids to the Children’s Museum?

I was vague with my response. “Oh you knowww…the usual stuff people do…”

If I had told her the real reason — that we were going to the Williams Syndrome Association‘s National Convention — I would’ve had to tell her that Emmy has Williams syndrome. And I wasn’t prepared to do that.

Very early on in Emmy’s diagnosis, we met with many doctors to find out more about our little girl. One of those doctors advised us not tell people about Williams syndrome right away.

You see, right before Emmy was born, we moved to a new town. So nobody knew us. And the doctor wanted people to get to know Emmy, and our family, first — without the label of “Williams syndrome.”

I took that to heart, and I didn’t tell anybody. Only our immediate families and a few friends knew. As time passed, I used to think, “Gosh this is starting to feel very uncomfortable and secretive.” But so much time had gone by, and I hadn’t said a peep. So it felt strange for me to now say, “Listen, I’ve been meaning to tell you something for the past year…”

It was a cycle that fed upon itself. The deeper I got into the secretive nature of it, the harder it was to say something.

And then, when Emmy was 1.5 years old, and we were a few weeks away from heart surgery, I FINALLY opened up to a neighbor. She was so incredibly sweet about it, and I wondered why I hadn’t just told her all along.

At that point, I kind of began “The Big Reveal” and started telling people left and right. But at this point, it was odd because everyone thought that we were just a regular family going through regular family stuff. And I would say, “Sooo you know us very well by now…but there’s something surprising I have to tell you. Emmy is going to have heart surgery next week” [which was met by complete shock and, sometimes, horror] “and she has something called Williams syndrome, which is very rare, and comes with all sorts of implications” [which was met with more shock followed by kindness].

If I were to do this all over again, I would’ve kept it a secret until I got a better handle on it, and then I would’ve told people. So maybe 2-3 months. After a year and a half, it came across as very shocking. And I think people also wondered why I had been hiding it for so long. When I think back on it, it’s very possible that the doctor meant for me to keep it a secret for 2 months and not a year and a half. But I didn’t think to ask about the exact timeline. I was just trying to process it all myself.

So after “The Big Reveal,” everyone knew. And I actually felt more comfortable with people knowing than not knowing. We needed a lot of support during and after her heart surgery, and people were there for us in droves. I was glad that I shared it publicly (I started blogging a little before then) because we couldn’t have gone through heart surgery without that support.

I was very comfortable with Williams syndrome, very accepting of Emmy, and very open about the diagnosis.

And then we moved.

And I never realized that we would be starting over. We would be back to a point where no one knew. I didn’t even have time to think about all of this before because we moved so quickly. And then once we were here, it hit me. All new people. None of them with any clue about our little family and what we’ve been through.

And now I would have to start telling people again. If I had thought about it before, I probably wouldn’t have imagined that it would be a big deal because I’m so open about Williams syndrome. But, somehow, it ended up being a big deal. Because I’m back in that same picture that the doctor painted early on. I’m new to a town. Nobody knows us. And, yet, we’re carrying a label.

Shouldn’t people get to know Emmy first before I hoist this label on top of her? Shouldn’t people get to know our family before I say, “My daughter has a syndrome that you’ve never heard of…” What would they think?

It’s been so long since I’ve thought about what others think when it comes to Williams syndrome, or how our family will be perceived, or the implications that a label would have on Emmy.

Things have changed because she’s older. She’s 3.5 years old, and she wants to play with other kids. She’s no longer a baby. She’s much more aware of how she’s treated by others and more aware of the reactions she gets. She can read people’s faces now. She can feel how they relate to her and can tell if they’re comfortable around her.

Keep in mind that Emmy doesn’t know what Williams syndrome is. I’ve told her, but she doesn’t understand it yet. Charlotte, my five year old who is typical, doesn’t really understand it either. So it’s a lot to take in. But I think that Emmy can feel that she’s different in some ways. She knows that she takes longer on the stairs when other kids just race down. She knows that she stands in the front of the line because she’s so tiny. I think she knows that there’s something there, and I think she is perceptive about how others relate to her.

So I find myself in the same place but a different circumstance. I’m in a new town where nobody knows about Williams syndrome…but now my child is older. And my mind doesn’t go to, “What will people think? How will they react to our family?” My mind goes straight to, “I just want to protect her.”

My instinct is not to tell. I want to protect Emmy, and I worry about how others will treat her. Not everyone understands what it means to have special needs. Not everyone grew up around someone with a disability. I, myself, had no clue about any of this until she was born.

But, even though my instinct is not to tell, when I finally told people before, life got a little easier. I wasn’t carrying around a secret, and I wasn’t silently censoring myself in every conversation — wondering if I gave too much away.

It might be better for me to tell.

Another Williams syndrome mom said a while ago, “It’s a great way of weeding people out. You can see who you really want to be friends with very quickly.”

So there I was, last Friday, talking to a mom in our new town. A possible new friend. She asked me casually about Emmy’s therapies, which she gets in school. So I replied, “Emmy has something called Williams syndrome.” My explanation of Williams syndrome is still lacking. It comes out in a rush like: “It’s a very rare syndrome that no one has ever heard of and has lots of implications…but she’s doing great!”

I have to work on my explanation. It’s a lot to take in.

But the mom smiled and said, “Oh, ok.”

This is where we are — starting over.

Change

Posted on December 13, 2014 by williamssyndromesmile

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? 🙂

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.

Blog Hop: My Writing Process

Posted on June 23, 2014 by williamssyndromesmile

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…

To the Newly Diagnosed

Posted on April 28, 2014 by williamssyndromesmile

A couple people whose newborn babies were just diagnosed with Williams syndrome contacted me over the past few days. They found my blog and were comforted by the cute pictures and stories about Emmy, who has brought such incredible joy to our lives.

When you first find out that your newborn baby has any kind of syndrome, it can be a devastating time. You were expecting the experience that you so carefully planned out in your mind (What to Expect When You’re Expecting, anyone?? That book certainly doesn’t talk about Williams syndrome!). And then you find out that the little person you just gave birth to had a secret when he/she was in your belly–and you had no idea. You Google the syndrome and find information that frightens you. There may be serious medical complications, and there will surely be learning disabilities. How could this little baby that you don’t even know yet come with a laundry list of possible problems? It’s the biggest shock of your life, and you’re not even sure where to begin.

And here is where the wedge comes in. A barrier sinks down in between you and your baby, and it’s completely out of your control. You want so badly to lift that barrier. You want to stop the rush of feelings that come at you every day (sadness, guilt, anger, confusion). You want SO BADLY to accept this baby. You want to just “get over” what you’re feeling. What can’t I stop thinking about this syndrome? And then you wonder…When will it get better? When will I stop feeling like an awful person and begin to embrace this diagnosis and accept my own child?

I think we’re expecting a lot from ourselves. We had a certain vision in our mind. That vision was completely turned upside down, and we expect ourselves to just “get over it.” There’s actually a grieving process that needs to happen. You need to grieve the loss of your original vision–the perfect plan that you had in your head. You need to allow yourself to feel every single feeling that comes your way–without passing judgment on yourself.

And then, with time, that barrier will start to lift. You feel yourself getting drawn into your child. You stop thinking about Williams syndrome as much. You start to really fall in love with who your child is becoming. Those old visions that you once had are now replaced by new visions and plans. You get excited at your child’s potential. You see your child blossom into a sweet, loving person, and you can’t believe your luck. You were given this incredible child. You were given this opportunity to stand side-by-side with your child and watch him or her do amazing things. You were brought into a special world that not everyone gets to see.

For me, it was Emmy’s personality that changed everything. Early on, I read that people with Williams syndrome have “a very endearing personality.” They have big smiles and are overly friendly. I clung to those words as if they were my life raft. Everything else I read seemed scary. But “endearing personality” and “friendly” were music to my ears. Please let this be true, I thought.

And then Emmy cried and screamed for 6 long months, and I thought “Well, I guess this isn’t going to be true in our case! There goes that life raft!”

And then came the big smile that turned my world upside down. HOW I LOVE THAT SMILE!!! That was a Williams syndrome smile, and it was big and beautiful and bright. It was a glimpse into her personality.

The next thing to emerge was the friendliness. We’d be sitting at a restaurant chatting away, and then someone at a nearby table would squeal with delight. I’d look over, and a woman would be waving to Emmy and saying to a friend, “She’s so cute!!” I’d look at Emmy, who was happily waving back and grinning.

The thing is that she knows she’s cute. She knows exactly how to draw you in. First it’s the smile, then it’s the narrowing of her eyes and the tilt of her head, and now it’s followed by a phrase. She might say, “Hi. How you doing?” or she’ll call out, “Hi, kids!” or she’ll even blow you a kiss. I mean, she KNOWS what she’s doing, folks. She KNOWS that smile is pure gold.

The other day we had an evaluation at a school with teachers that are unfamiliar to her. In no time, she was putting on a show of “Twinkle Twinkle Little Star,” complete with smiles and hand movements. Anyone watching can’t help but say, “AWWWWW!”

She’s also very funny. If you ask her an obvious question (like “Is that a shoe?”), she’ll give you an exaggerated but joking “Noooooooo.” And then when you respond, “No? Are you sure??” She’ll say “Nooooooo” again, just to get you to laugh. She knows it’s a shoe, but she’s pulling your leg.

And she loves to chase her sister around the house while saying nonsense words like “Beebee beebee beebee.” Charlotte will run away from her laughing until, finally, both girls collapse in a giggling heap on the floor. It’s so much fun to watch.

So to the newly diagnosed I say: Wait.

It will take time to get to this point. And, in my experience, the first year is the hardest. So let yourself feel all of those feelings. Don’t pass judgement on yourself. Just really feel it. Get mad. Scream. Be upset. Say, “It isn’t fair!!”

And then, as the days, weeks, and months pass, things will change within you. You will connect with your child. You will fall in love with your child. You’ll be bragging about how wonderful he is. You’ll be glowing, fresh from the thrill of something new that she has done. And, even though you didn’t sign up to travel this road, it will feel as if this was meant to be–all along.

Blogiversary

Posted on March 17, 2014 by williamssyndromesmile

Somehow it’s the 1 year anniversary of my blog…which basically means that TIME FLIES! My first post was about green bagels on St. Paddy’s Day (Green Bagel Morning), which we dutifully ate again this year.

I’ve really enjoyed blogging over the past year. I’ve loved the connections that I’ve made with people, and this blog REALLY REALLY helped me out when Emmy went into cardiac arrest after heart surgery last May (You can do it, Emmy!!!). I never in a billion years thought that I would be blogging while my daughter was on life support. It seems almost trivial. Blogging while your kid is on life support?? What?? I’m not even that much of a social media person, so it doesn’t seem to fit my character.

But oh-my-gosh, did it help!!! The messages of encouragement kept me going. And the support was incredible. I felt as though we were lifted through that entire experience on the shoulders of others. I didn’t feel like I was going through it alone.

I still get rattled when I look back on my blog posts during that time. It can bring me right back to that hospital room in a split second. It’s surreal to be so far removed from that experience now–physically removed but not mentally… Never mentally.

I have two favorite posts from the past year. I mulled over These Are The Shoes for a LONG time before I wrote it. Every time I opened Emmy’s drawer, those shoes would stare at me. And every time I thought, “I have to write about this feeling to get it out of me.” I’ve mentioned a few times that writing is like therapy for me. When something eats away at me, it’s all I can think about. And then once I get it down on paper, the immediate relief is unbelievable. Seeing those shoes every day really affected me and then, once I wrote about it, I was able to let it go. Amazingly, the shoes don’t bother me anymore.

My other favorite post is In Love. I LOVE that picture of Emmy. She looks like she’s shining from the inside out. That post represents a divide for me. I felt as though I let Williams syndrome come between Emmy and me for a long time. I was very aware of the fact that she has Williams syndrome. I thought about the implications a lot, and it kept me at a distance from her. This was totally unconscious on my part, but it happened nonetheless. We went through hell during her heart surgery and recovery and, while I would never want to go through something like that ever again, it helped me realize that Emmy is my daughter first and foremost. I no longer saw her as “my daughter, but let’s not forget that she has Williams syndrome.” I saw her as my daughter. Period. End of story.

And even though this blog is called Williams Syndrome Smile, my older daughter Charlotte, and husband Dan, (and the new baby soon!) have all played a significant role as well. I think this is more about life in general. Parenting is a minefield, I tell you. Having a child with special needs might color some of my experiences in a different way, but 99% of the time, I’m doing the normal things that every parent does. My #1 goal in life is to not screw up my kids…and yet I can guarantee that I’m already doing something wrong. (And it’s probably the thing that I think I’m actually doing right!! That’s the irony of it all.)

Thank you so much for reading and sharing, everyone!! I’m looking forward to Year #2.

Loud and Proud

Posted on September 20, 2013 by williamssyndromesmile

The average person wouldn’t know that Emmy has Williams syndrome. First of all, it’s a rare (1 in 10,000) genetic condition that most people haven’t heard of. And, secondly, to the untrained eye, she outwardly looks and acts like any other child. If you’re not an expert on genetics, you probably would have a hard time picking a child with Williams syndrome out of a crowd.

This applies to many other syndromes as well. Since finding out that Emmy has a genetic condition, I’ve met other families who have revealed their own child’s diagnosis. And, just looking at them, I would have had no idea.

So I don’t have to tell anybody.

Nobody needs to know.

It can be a secret between me, my family, and the school system.

These ideas went through my head in the beginning, when we first found out. Especially because a doctor told me that I shouldn’t reveal her diagnosis until I knew someone really well. She told me that people can be confused and, later, cruel. I became terrified that other people would hate us; hate our family — just because we were different. I had an image of everyone gathered at a neighborhood picnic, and our family showing up. In my head, I saw the heads in the crowd turn to look at us and whisper among themselves that we were “that family.”

I saw it because I knew it.

When I was growing up, we had people in my town who were different. And everyone knew who they were. There was the guy who always walked around town because he couldn’t drive — because he has special needs. I always saw him at the park and the coffee shop. I was aware of the fact that he was different. And I wasn’t anywhere near as open-minded and curious as I am now.

When I was growing up, I casually noticed him, but I never spoke to him. I should have said “hello.” I should have been friendly and welcoming. I have learned SO MUCH about other people and their differences since finding out about my own daughter. That has been one of the many gifts she’s given me.

Recently, I drove around my old town, and I saw that very same guy walking down the street. I swear I cried at the wheel. All of a sudden, I became more aware of who he was. I became curious about his story. And I also reflected back on the kindness of others. I thought about the people who had talked to him at the coffee shop and shook his hand at the park. I now believe that there are more loving and caring people in this world than there are cruel people.

I believe that those who love will embrace our family enough to drown out that small faction of cruelty.

So I write this blog and share our story, loud and proud.

The response has been incredible. I don’t feel like “the others.” On the contrary. I’ve been so moved by the number of people who have accepted us — and appreciated us — just as we are. This is my family. This is reality. I can’t change who we are, and I don’t want to.

When I found out about Emmy’s diagnosis, I had some incredible phone conversations with other Williams syndrome moms, which I will never forget. I remember telling one of the moms that I was too scared to reveal Emmy’s syndrome — too afraid that the other moms on the playground would ostracize me.

She replied, “If that happens, you need to silently thank them. They’re showing you who they are — right off the bat, and you wouldn’t have wanted to be friends with them anyway.”

I take that with me. She’s absolutely right. I wouldn’t have wanted to be friends with those people anyway. And the people I have met as a result of sharing Emmy’s diagnosis? They’ve been amazing.

Williams Syndrome Smile

How one smile changed many lives–for the better

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