Starting Over

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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

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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? 🙂

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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. 

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Little Reminders

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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.

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She Can

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You have a bowl of ice cream in your hands. A bowl of raspberry ice cream with rainbow sprinkles. And you’ve been waiting all day to eat this thing. You’ve been talking about it to anyone who will listen. Well, the moment is finally here!

You push your plastic, white spoon into the ice cream and pull it out…nothing. You jam your spoon in again, a little harder, and pull it out. Nothing. Your mouth is watering. You notice the other people around you. Everyone else is absentmindedly dipping their spoons into their ice cream and pulling them back up with a heaping mound of yummy. No one else seems to have trouble with this. But this is really hard for you. You even mutter, “is really hard.”

You try again, and finally you manage to spear a little bit of ice cream with the tip of your spoon. Victory!! But as you pull it towards your mouth, the tiny bit of ice cream falls off the spoon and onto your lap. Now you’re wet, your clothes are stained, and you still don’t have ice cream or sprinkles in your mouth.

But you don’t give up. And you don’t accept help. This is your battle to win. Again and again you try until, finally, you manage to keep ice cream on your spoon long enough to get it in your mouth. You weren’t able to get sprinkles too, but that’s ok. You’ll try again next time. As you enjoy your first small bite of ice cream, you look around. Everyone else is done. Their bowls are empty; licked clean. In the time it took you to take that first bite, everyone else gobbled theirs down.

So it takes you a little longer. And it’s a little harder. But you don’t give up. You keep eating away, content to finally have your ice cream after a day of waiting.

This is what it’s like for Emmy when she eats ice cream, something that most people do absentmindedly. When I eat my ice cream, I don’t think about what I’m doing. It just, well, happens. But when Emmy eats ice cream, she has to work harder.

But she does it! She tries and, eventually, succeeds.

This is why it upsets me so much when people assume that children who have special needs can’t do things (Just Like You — my last post).

It’s not that they can’t.

They can, but it may take a little longer. They can, with help. They can, but they may need modifications. They can, with the proper supports in place. But they can.

Sometimes Emmy says, “I can’t.”

Not only are things harder for her, but she is TINY. Climbing on a big couch is difficult for her. Operating scissors with her little fingers is tough. And sometimes she defaults to “I can’t.”

But that’s not true. She can, and she proves it time and time again. Because with a little nudge, she’s up on the couch. With the correct positioning, she’s operating those scissors. She can. She just needs help sometimes.

And sometimes she doesn’t need help. There are many things that she does beautifully on her own, like dribbling a soccer ball. She learned that one from her older sister.

Last night at dinner, Charlotte proudly spelled her first and last name aloud. So, on a whim, my husband Dan asked, “Emmy, can you spell your name?”

She looked straight at him and replied, “E-M-M-Y.”

Dan and I practically leapt into the air and shouted, “Yes, yes, yes! That’s it!”

Then she gave a grin and continued calmly, “O-A.”

We’ll take it!! 😉

The teachers at her preschool have been awesome about including Emmy in all of the activities that everyone else does. And she’s learning so beautifully from both her teachers and peers. Sure, her construction-paper pumpkin looks a little different from the others. And her circles are not as perfectly formed. But she’s doing it all.

I think it’s important to acknowledge that people with special needs CAN.

She can. She will. She does. She did.

Don’t Help Me

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Emmy and I were walking down the front steps to our car, so I extended my hand to help her out. Do you know what she said?

“Don’t help me.”

Here I had just written a post about a mom who helped Emmy down the stairs of her school (The Kindness of Others), and now my daughter is saying “Don’t help me.”

Can you imagine how I felt?

Ecstatic!

When you first find out your child has a disability, you go through all kinds of emotions and work through many scenarios in your head. Some of the things you likely think about are, “Am I going to have to help her with everything? Will she live with me forever? Will I even know what retirement feels like?”

There’s the expectation in our society that you raise your kids until they’re 18, and then they fly the coop. Of course, parents will often share winks when their kids come back home to save up money before getting a place of their own. But do parents of kids with disabilities share those same winks? Or is it just assumed that your child will live under your roof forever?

When she was a baby, I had no idea what Emmy would be like, and I didn’t know what was in store for our future as a family. As she gets older, she’s showing more and more of her personality. She is feisty! She is determined! She is persistent! 

This past Easter, she was playing with a plastic egg, trying to put it back together. That’s really hard for someone whose little fingers can get tripped up on each other. She fought with that egg for quite some time…until she fit the two pieces in place! Then she gave her signature smile and said, “I did it!”

And a couple months ago, I heard the sound of a music box coming from the girls’ bedroom. It takes a lot of effort and strength to turn that heavy knob. I thought, “Charlotte is playing with the music box again.” But wait…it couldn’t have been Charlotte — she was in the livingroom. I poked my head into the bedroom to see Emmy determinedly turning the knob on the music box. And then I ran to grab my camera.

She wants to do what the other kids are doing. It may take longer. It may be harder. But she wants to do it.

When she was first diagnosed, I had no idea that the strength of her determination would take her so far. I was more focused on the negative “What ifs.” What if I have to do everything for her? What if she’s completely helpless?

Here’s a thought…

What if she totally surpasses every one of my expectations? What if she teaches ME how to be persistent?

A secret…I can be guilty of giving up too soon when I’m not good at something. Eek! It’s true. I have been known to swiftly turn around when something is out of my comfort zone. You can be SURE I wouldn’t sit down with that Easter egg for a half an hour if I didn’t fit it into place within the first three minutes. And if I struggled to turn the knob on the music box, I probably wouldn’t have kept at it. I would’ve found something else that came more easily to me…

But Emmy doesn’t do that. She pushes her boundaries! I’m glad she doesn’t take after me in that way. 😉

So, yes, I’m totally ok with the fact that she doesn’t want my help. You go, girl!

I Love to See You Laugh

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We were about to walk out the door on our way to school, when Charlotte asked, “Mom, have you ever laughed?”

I froze.

She wasn’t being sarcastic. She was asking me earnestly if I ever laughed. I thought, Wow my child hasn’t seen me laugh in the 5 years she’s been alive?? Something is wrong here.

Her words resonated in my head throughout the day, as I turned her question over and over in my mind. Was I really walking around in a state of misery 24-7? I certainly didn’t feel that way…

Then I realized what she was asking. She wasn’t asking if I was miserable all of the time. She wasn’t asking about my smiles or my chuckles (many of which I give throughout the day). She was asking about the belly laughs.

Can you picture the belly laugh of a child? It is the cutest thing ever! The first thing you notice is the grinning little white teeth and gums. Then you hear the sound of hearty laughter as they throw their head back. And then they often bend over, clutching their sides.

And what makes them laugh like this?

Usually the word “poop.”

That’s all you have to say to a child: “Poopy poop poop.” And you are gifted with the most incredible belly laugh, one that rings in your ears just thinking about it.

At one point in our lives, that belly laugh was instantaneous. As a child, you could access it at a moment’s notice. But as we get older, that belly laugh is tougher to find. Perhaps the things that once made us laugh aren’t funny anymore. Or perhaps there are fewer things to laugh about.

It was 6 months ago that Charlotte asked me if I’ve ever laughed and, ever since, I’ve tried to let that belly laugh back in. I know she sees my smiles and my chuckles. But I want to show her that I can belly laugh too. I want to show her that I’m having fun with life (even if I’m often stressing about many aspects of it…).

I thought back to my own life and two people I love to see belly laugh — my parents. There’s nothing better than my dad getting red in the face and laughing so hard that he cries. I don’t want my parents to worry or stress. I love to see them happy — to see them truly experiencing lighthearted joy.

Some of the most wonderful belly laughs I’ve ever seen came from my grandmother, who we lost in August. She used to say, “I love to laugh!” And it was true. Even in her 80’s, she allowed herself to go to that silly place. She didn’t constantly mull over the hardships of life and say “Woe is me.” Just the opposite. Even when she had cancer, she laughed and laughed and laughed.

I want to make an earnest effort each day to tap into my belly laugh, especially around the kids. I want them to see their mom having fun with life. I don’t want to teach them that life is difficult and grueling and tough. I want them to see the lighthearted side of things.

And something else… I don’t want my kids to lose their ability to access that genuine belly laugh. But if they see that I’ve lost it, why wouldn’t they just follow in my footsteps?

The tricky part is that it’s hard for me to laugh at “Poopy poop poop” jokes. But we’ve started to move out of that territory a little bit. Emmy now puts things on her head at the dinner table, and there’s something very funny about her saying, “Napkin on my head!”

The good news is that my efforts haven’t gone unnoticed! We were in the car yesterday when Charlotte said something silly from the backseat, and I genuinely belly laughed.

Her response?

“I love to see you laugh.”

The Kindness of Others

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Yesterday, as Emmy was working her way down the steps at school, a parent held out her hand.

“Want some help?”

Emmy gladly accepted the hand, and the two of them walked slowly down the steps together. I don’t know this woman. I’ve seen her around, but we hadn’t officially met until yesterday. Yet she saw that Emmy was a bit slower on the steps, and she was eager to extend a hand.

And when I came to pick up Emmy at school the other day, a little girl saw me and said, “Emmy, your mom is here!” But she didn’t stop there. She put a hand on Emmy’s back and gently guided her through the sea of children. This little girl of about four years old led my daughter to me.

Because my daughter has special needs, I see something that others may not see. I see people who show a level of kindness that goes above and beyond what is expected.

Sure, we all say “hi” to each other as we go about the hustle-and-bustle of our daily lives. We offer a quick smile or a wave. We hold the door for each other. We say “Excuse me” and “Oops. I’m sorry.” We’re in our own little worlds. It’s how we live, and it’s what we’re used to.

But now I also see the people who drop everything to help someone with special needs. When that happens, there’s an incredible kindness that comes through. And there’s a softening. Our crisp, sharp world becomes fuzzy around the edges.

As I stood waiting for Emmy to work her way down the steps holding a woman’s hand…

And as I stood waiting for a little girl to guide her though the crowd…

Time stood still. Everything became softer. 

I wonder about people like this. Where does this kindness come from? Do they have a sibling with special needs? Do they work with people who have special needs? Did their parents teach them to be kind to people with special needs? Or are they just born this way?

Before Emmy was diagnosed, I didn’t have this trait. Of course, I was perfectly pleasant towards people with special needs. It’s not like I was cruel or anything. But I didn’t have the stop-everything-and-help trait. I didn’t know anyone with special needs and, actually, I didn’t think much about it. I was very much in my own little world.

I’d say most people are just like I was. They offer Emmy a quick smile. Or they might look quizzically at her, perhaps thinking, “What’s wrong?” Or they don’t even notice her at all.

But then there are these people who stop EVERYTHING and extend a hand. This woman’s own daughter was at the bottom of the stairs already. She could have easily raced down the stairs, offered me a brisk “Hello,” and marched towards her car — already thinking about what to make for dinner. I wouldn’t have faulted her a bit. It’s what everyone does. Hey, I’m busy too, so I get it!

But, rather, she stopped. And she extended a hand.

When I see the kindness come through in children is when it really gets me choked up. When I see kids holding Emmy’s hand to help her along. Or when I see kids try and pick her up to help put her on a tricycle. Or even when kids stop to say, “Hi Emmy!” Those things make her day. And they make mine too. It makes me feel like we’re going positive places in this world. I applaud the parents who are able to teach this kindness to their children. I think it will make them better people, for sure.

I already see how Charlotte has blossomed because of her sister. She is so kind and so helpful. When she takes Emmy’s hand, that softness happens. Just writing about it, I can actually feel it.

People with special needs deserve this kindness. They don’t deserve hurtful words and teasing. I see how Emmy has completely changed my life. Her incredible spirit has softened me. And she has shown me how to really stop and see these little moments of softness in an otherwise fast-paced world.

Blog Hop: My Writing Process

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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…

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He’s Home!!

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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

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Happy to be home!

The Passing of Time

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I’m so aware of the passing of time right now. Charlotte turned 5 years old  on May 21. Last year, we were celebrating her birthday with my mom and my aunt at home, when I got the call from my husband who was in the hospital with our other little girl–they were going to try and take Emmy off life support in about an hour. She had been on life support for a week and, on Charlotte’s birthday, they were going to see if Emmy’s heart could beat on its own. I was terrified, nervous, and excited. I felt like Emmy had come so far already, and I had confidence that she could pull through. But I was also scared that this wouldn’t go well. Either way, it had to be done. She was starting to bleed from the life support machine.

I gave Charlotte birthday wishes, hugs, and kisses, and hopped in the car. The hospital was about an hour away, so I would hopefully be able to get there just in time. I don’t think my own heart has ever beat as rapidly as it did on that drive. I kept talking to Emmy in my head: “You can do it! Come on, Emmy!”

Right before I crossed the bridge to the hospital, a song came on the radio. It’s called “Keep Your Head Up” by Ben Howard. I’d heard this song a couple times and always liked it, but this time the lyrics affected me differently. I flew over the bridge with the chorus in my ears: “Keep your head up. Keep your heart strong.” I cranked up the volume and, with tears running down my cheeks, sang along: “Keep your head up. Keep your heart strong.” I kept singing louder and louder, willing Emmy to hear me.

I got to the hospital just before she was taken off life support, and it was such a relief when the doctor came to get us in the waiting room. She said Emmy had transitioned off of life support nicely, and her heart was beating on its own!

First we felt joy and relief! Then the exhaustion of the prior week came washing over me. Emmy had gone in for heart surgery on May 16 and, after two cardiac arrests and a crash onto life support, we had been living on pins and needles. We were also trying to make things as “normal” as possible for Charlotte–keeping our promise to celebrate her birthday; trying to devote as much time to her as possible. That day alone, I had made several trips to the hospital. I brought Charlotte in to celebrate with Daddy in the waiting room. Then went back home. Then drove back when Emmy was ready to come off of life support. Dan and I were beyond tired–physically and emotionally–and it would be another few weeks before we were able to bring Emmy home…

And despite all of our hard work last year, Charlotte’s birthday was still kind of a disaster. I think that, emotionally, she is very tuned into us. She could feel that things weren’t right, even though we tried to make the day special. She was a trooper about celebrating her birthday in the hospital’s waiting room, but she also sensed that this wasn’t how birthdays usually go.

This year was much different–thankfully. She had an absolutely awesome birthday, and Emmy was there to celebrate with her.

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Looking at 5 year old Charlotte, I keep thinking of the little baby we met in the hospital in 2009. How quickly it all goes by! It makes me want to freeze time.

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Ironically, during the newborn stage, I wanted time to speed up. We were so tired! We didn’t understand why our baby didn’t sleep. No one told me about that part. Ok, they did, but I apparently didn’t listen. 😉 Now I’d like to go back to that day we met her and learn to take it slow.

I’m constantly caught between focusing on the future and settling into the present. This morning, Emmy was saying funny things at the breakfast table, which is typical for her. She loves to make people laugh. And I found myself thinking, “I can’t WAIT until she’s 10 years old!”

I mean, now the funny things she says are short and sweet: “My birthday too! Need presents! Emmy need presents too!” I can only imagine what a ham she’s going to be as she grows older. But then again…when she’s 10, I’ll be longing to recapture these toddler years.

So here I am at 36 weeks pregnant.

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And on the one hand, I am SO ready! I want to meet this baby, and also I’d like to fast forward through the uncomfortable feelings of the next few weeks (heaviness, lethargy, etc). I’m also nervous about my uterine window holding up and my third C-section. I’ve already been to Labor and Delivery twice over the past few weeks! Once I gave myself an electric shock (by putting my finger in a socket, which was beyond dumb), and the second time I was bleeding (but I’m ok now). So let’s get this show on the road! I’m ready for baby.

Then again…this will probably be my last pregnancy. I really need to try and appreciate these last few weeks. When I let fear and anticipation get the better of me, I live in the future. I want to just end up on the *other* side of everything. I have trouble with the right now.

Sometimes it’s ok to focus on the other side, like imagining Emmy off of life support. That’s an experience that I don’t want to relive.

Other times, it’s better to settle into the present. Time passes whether we appreciate these moments or not. Makes more sense to appreciate them. Hope you enjoy today!