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.

Just Like You

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Photo credit: nj.com

Liam is a 4 year old little boy who wanted to have his birthday party at a gymnastics studio in New Jersey. When his mom went to sign the contract, she noticed that there’s a “Special Needs clause.”

It reads: “Special Needs children: Please indicate if your child or any children attending the party have any mental or physical disabilties/special needs. (Surgent’s Elite is not certified in special needs instruction and reserves the right to deny party and gymnastics instruction.)”

Liam’s mom asked about the clause, while mentioning that her son has Down syndrome. Consequently, the gym turned her away.

This didn’t happen in 1954. This didn’t happen in 1994. This didn’t happen in 2004.

This happened YESTERDAY.

You can read about the story here:

http://www.nj.com/union/index.ssf/2014/10/cranford_mom_of_boy_4_with_down_syndrome_denied_birthday_party_at_surgents_elite_gymnastics.html

And you can read the contract here:

Click to access PartyContract.pdf

(***Update: The contract appears to have been taken down. However, you can see it if you click on the link to the story and scroll to the second image:

http://www.nj.com/union/index.ssf/2014/10/cranford_mom_of_boy_4_with_down_syndrome_denied_birthday_party_at_surgents_elite_gymnastics.html)

I’ve been upset about this since it happened. I assumed that this was a misunderstanding. And then, when I realized that it WASN’T a misunderstanding, I figured that the gym would quickly apologize and give Liam a free party. On the contrary, they doubled-down on their decision.

Their policy is that no children with special needs are allowed at this gym. Not for parties. And not for classes. Again, this happened YESTERDAY — not 50 years ago.

What the owner of this gym doesn’t understand is that Liam is just like every other child. I don’t even know him, but I know he laughs, cries, likes to have fun, and loves birthday parties — especially his own. How do I know this? Because he’s just like me. He’s just like you too.

People with special needs are human! They’re not meant to be segregated by our society. They’re not meant to be excluded from activities. They’re not meant to be pointed out and sent packing.

Imagine if this was you. Imagine if you wanted to have a birthday party at a particular place and the owner said, “You’re not allowed here.” Imagine how that would feel.

Or imagine if you were a guest at a birthday party, and you showed up in your best outfit, only to be turned away at the door. “Didn’t you see our clause? You’re not allowed here.”

Now imagine that this wasn’t you…but that this was your child. Your child showed up for a birthday party and was turned away at the door.

Just imagine that tear-streaked face. “Why don’t they want me here?”

Imagine telling your child why he or she is not allowed at this birthday party.

“It’s because you’re different, honey…”

“I am? How?”

People have left comments on the news story supporting the gym. They say things like, “Well, what about medical issues? I can see where the gym is coming from…”

So where does it stop? Pretty soon, people with special needs and/or medical issues can’t go to gyms, can’t go to parties, can’t go to parks, can’t go to malls, can’t ride in cars…

Everything is a liability, right?

I have a better idea. How about we treat people with special needs as if they’re just like us. We’re allowed to go to gyms, parties, parks, malls… We’re allowed to experience all aspects of life. That’s called being human. Everyone is afforded the same rights.

I know that my daughter loves birthday parties. LOVES THEM. I’m imagining her getting all ready for a party, cheering in the car when we drive up, and then getting banished at the door because “Didn’t you see our Special Needs clause?”

I’m imagining her turning towards me with that tear-streaked face and saying, “Why?”

And what would I tell her? That people with special needs aren’t allowed to go to birthday parties? Really??

I can’t do it. I can’t tell her that. She deserves MUCH, MUCH, MUCH better than that. She’s an incredible kid.

And if you met her, you would see that she’s just like me — and just like you too.

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.

Head Above Water

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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

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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!!

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!

Theodore

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I was actually in the middle of a blog post on Monday when I clicked “save draft” and headed to my doctor’s office. My blood pressure had been high for the past few weeks, so they asked me to come in for another check. Sure enough, it was even higher. They sent me to Labor and Delivery, where it was determined that we should go ahead with my C-section, three days earlier than scheduled.

I was nervous about the C-section, but I’m nervous anyway when it comes to surgery. It did seem as if my body was giving me signals that it was time. The high blood pressure was a problem and, sure enough, when the OB opened me up she found the uterine window that we’d be warned about.

When I had Emmy, my uterus was very thin, and we knew that we would have to be careful during this pregnancy. A thin uterus could lead to a uterine rupture, which would be bad news for everyone involved. I was monitored during this pregnancy but, sure enough, when the OB performed the C-section a very, very thin window was there. She also saw my baby’s hand under it, waving. So, yeah, we were advised not to have another after this one…

But here he is! My third baby, Theodore. We call him Theo. 🙂

When they put Theo on my chest, I immediately noticed that he was coughing up a fair amount of mucus. I knew right away that he was going to the NICU. I’ve learned so much since Emmy was born. I know the signs. Theo actually didn’t look as bad as Emmy. When she came out, she was blue, ice cold, and had a strange cry (like a cat with its tail caught). Theo, on the other hand, was rosy and warm, and his cry sounded substantial, though a little garbled from the mucus. But I just had a feeling.

Sure enough, Theo ended up in the NICU. His blood sugar was low, but it looked like all he needed was a little intervention and some time to clear the mucus out of his lungs. I actually felt ok with him going there. It wasn’t ideal, but I knew that they did wonderful things for Emmy when she was born, so I wasn’t as afraid as I was the first time around.

I put on my brave, big girl smile and waited patiently for him to come out of it. And he was doing ok for a while…until he wasn’t.

A day or two later (I can’t even remember…), the doctor came into my room to say that Theo was requiring more oxygen support and would have to go on a ventilator. I couldn’t help myself and asked about all kinds of hypothetical situations. And then I just lost it. Everything came up again. And I mean EVERYTHING: Emmy’s time in the NICU, Emmy’s heart surgery, Emmy’s cardiac arrests; Emmy’s crash onto life support. I relived all of it. While Dan went down the hall with the doctor to watch Theo’s vent get put in, a really sweet nurse came to comfort me. I told her that you can only be brave for so long before you just lose it…and I lost it.

When I wiped my tears and was able to make my way down the hall to see Theo, one of the NICU nurses kindly handed me a tissue and said that it’s been a tough few days. I heard myself say, “It’s been a tough few years.”

I was really down.

When I got back to my room, my sister sent me a text that said she was amazed at our positivity when Emmy was in the hospital last year. She was impressed by our optimism and our faith that everything would be fine. She loved that we cheer-leaded Emmy along to good health. Emmy needed that positivity, and luckily it was radiating out of me.

But now it was harder for me to conjure up that positivity. I just felt completely drained. I guess I never thought I would need to harness that ability again. And I didn’t know how I was going to get it back.

Luckily, a wonderful friend called and talked me through it. She’s a very smart and solution-based person, and she’s also spiritual. All of it helped IMMENSELY.

One of the things that was difficult for me was that Theo’s numbers would jump around whenever anyone touched him or talked near him, including his mama. So I had to leave him be in order for him to get better. I felt so helpless. But my friend had a great suggestion, which was to ask for some of Theo’s swaddling blankets, sleep with them, and then give them back with my scent. That made me feel soooo much better. My spirits came back up, and Theo also started doing well.

So now it’s the slow and steady wait. He’s still on the ventilator, but he’s showing signs of progress. I’m sad and exhausted and still in pain from the C-section…but I’m also positive! I know he can do it. I can’t wait to have him home, and his sisters are SO excited to meet him. Emmy keeps saying, “Theo coming!”

Yes he is, Emmy. Sit tight. 🙂

Theo2