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.”

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!!

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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.

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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!

Inseparable

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These two have become inseparable, and that makes me so happy.

The backstory here is that, during my pregnancy with Emmy, I constantly fantasized about the relationship between my daughters. My sister and I are very close, and I could only imagine how strong the bond would be between Charlotte and Emmy. I imagined them just like my sister and me–sharing secrets and giving advice.

My weaknesses are my sister’s strengths. She’s six years younger than I am, but she’s often stepped into the big sister role on my behalf. I used to be painfully shy, and I would be terrified to return anything to a store. When I was fourteen and she was eight, my little sister marched into a music store on my behalf, walked right up to the register, and said, “Hi. I need to return this CD please.” I cowered towards the entrance of the store and peered around the aisles to see how the return was going. She came back triumphant with the money in her hand. I was always amazed at how easy she made it look. In a way, it was embarrassing to rely on my little sister. But I was also glad that I had someone in my life who would stand by me–no matter what.

Now that I’m older (and maybe a little wiser), I feel like I can pay it back. I’m usually able to give her a glimpse of life experiences before she goes down any road. I dated a couple of guys who were really (how can I put this nicely…?) awful. I like to think that she learned from my heartache and, sure enough, she was able to escape all the bad boys and ended up with an amazing boyfriend, who later became her husband. I’ve also been able to give her advice about her career or her life’s purpose. And, even though I’m the big sister, she still gives me tons of advice too. She’s mature–that kid. (She’s almost 30, by the way…)

I feel as though we have an equal give and take, and I value that so much.

And I saw the same for Charlotte and Emmy.

Then we found out about Williams syndrome, and all my visions of replicating the bond that my sister and I have went right down the drain. I just didn’t know anything about Williams syndrome. I didn’t know how Emmy would act or talk or think. It was an enigma. Would she be able to offer her strengths for Charlotte’s weaknesses, as my sister has done for me? Would she be able to give career advice? Would she know how to keep secrets? Would she even want to keep secrets? And how would Charlotte feel towards her little sister?

Early on, I started looking for stories about people who have siblings with special needs. I did find some very sweet stories. But I also found other stories–ones about feeling ignored by parents or resentful and angry. I found one story that really shook me. It was about a boy who was so embarrassed by his sibling with special needs that, instead of standing up for him, he joined the bullies in their taunting. Every day after school, a few bullies and his own brother made fun of this little boy as he walked home. GOOD GRIEF!!! That was hard for me to digest. If your sibling won’t stick up for you, who will?

All of this has been swirling around in my mind since Emmy was born. I’ve talked to my own sister about it several times. On the day we found out Emmy’s diagnosis, I remember sitting on the phone with my sister, crying, and asking, “But do you think they’ll be like us? What if Charlotte needs advice about her job? Will Emmy be able to give it to her?”

And my sister said the most wonderful thing: “Maybe Emmy will able to give the best advice of all. You just have no idea how she’ll see things. Maybe her way of seeing things will be so different from everyone else’s that her advice will be the most helpful.”

That positive spin really, really helped me.

And as the years have passed, this younger-version sisterly bond has grown very tight. When Emmy was a baby, she and Charlotte had the typical baby-toddler relationship. Sure, Emmy was cute, but she wasn’t able to communicate yet and cried…a lot.

The first glimpse of their close bond came when Emmy was in the hospital for heart surgery about a year ago. Every day, for twenty-two days, Charlotte would bring home a drawing from school that said “Emmy” all over it. If you gave her a crayon, she would just write “Emmy Emmy Emmy” over and over. She got a chalkboard for her birthday last year and, sure enough, the first words she wrote were “Emmy Emmy Emmy.” To this day, almost every time she makes a piece of art, she writes “Emmy” at the top. She doesn’t write “Charlotte.” She writes “Emmy.”

And now, as Emmy has become more verbal, they really have fun together. They playfully tease each other with high-pitched voices, they laugh and roll on the floor, they tickle, they share toys, they draw together; they hold hands.

Charlotte loves to be the teacher. “Emmy, look how I brush my teeth. See that? Now, you try it.”

And Charlotte is such a good cheerleader too. “MOMMY! DADDY! You won’t believe what Emmy just did!!” She’s so proud when Emmy hits little milestones, and she really notices those milestones, just as we do.

At almost five years old, Charlotte has started to develop fears (monsters, darkness, bugs). And wouldn’t you know that two-year-old Emmy has become her protector? If Charlotte is afraid to go to sleep at night, I say, “Don’t worry. Emmy is right here. She can protect you from anything.” And that seems to work!

On her end, Emmy just adores her big sister. We were at the hospital the other day, and someone who works there was named Charlotte. Well, every time Emmy heard “Charlotte,” she looked around frantically and asked for her sister.

Also, Emmy is eager to show her big sister any new thing. If she puts on funny sunglasses or finds a sticker or opens a book, the first person she wants to show is Charlotte.

At the dinner table, Dan and I just watch the two of them banter and giggle. There isn’t much eating going on (Charlotte is repulsed by my food most of the time…), but there is a lot of laughter. It will be interesting to see how their dynamic evolves when a little boy arrives in June. Right now, I am so happy with how close they’ve become. It’s better than I even imagined.

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Blogiversary

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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.

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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.

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Something to Watch this Weekend

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Photo credit: http://www.missyoucandoit.com

If you have HBO On Demand, do yourself a favor and watch a documentary that will capture your attention and melt your heart. If you click on HBO and go to “Documentaries” then “Feature Films,” you’ll find a movie called Miss You Can Do It.

You can watch the trailer here: Miss You Can Do It Trailer

I’m not usually into movies about pageants, and when my husband and I sat down to watch it, I thought, “I hope this isn’t too pageant-y…or too depressing…” Usually, when we do video date night (because you know we’re not going out to the movies), I try and find something funny and light-hearted.

So, for this one, I took a chance. And, yes, I bawled my eyes out–but in a good way! I highly recommend it, for parents of typical children and those with special needs.

I wish that I had been more interested in special needs before I had a child with special needs. Does that sound strange? I feel like I was incredibly closed off from that world, and now I realize that I could’ve gotten involved a long time ago.

If my daughter didn’t have special needs, would I have watched that awesome pageant documentary?

Or this one? Monica and David

Or this one? Best Kept Secret

I can tell you the answer. I probably wouldn’t have watched any of them. I don’t think that makes me a bad person. I think we’re drawn to what we know. And I didn’t know ANYTHING about special needs until July 2011, when Emmy was born.

I know that Oprah loves this quote by Maya Angelou: “When you know better, you do better.”

In my case, I think that it would be: When you know more, you do more.

I’ve stretched my boundaries because I had to. But I’m so glad that I had to because I never would’ve seen what was on the other side.

Over the past few years, I’ve met a fair amount of people who have dedicated themselves to special needs work without having a child, or sister, or brother with special needs. They just did. For various reasons, or perhaps for no reason at all, they wanted to help. I am always touched by those stories. I think I’ve asked almost all of our Early Intervention therapists, “So how did you get into this?” Where did that all start? One therapist told me that, as a teenager, she was helping a friend of the family with her autistic child. I can’t tell you how much that impacted me because I thought back to what I was doing as a teenager and, while I was a good girl :), I wasn’t involved in anything meaningful on that level. I didn’t stretch much out of my comfort zone. One of my goals is to open my children up to a world beyond what they can see. There are many people out there, each with his/her own story to tell. It makes me feel good to finally open my eyes to all of those stories, not just my own.

Why I Stopped Apologizing for My Child

Apologizing

A while back, I was looking to find a daycare that Emmy could attend a couple days a week. Before I started my journey as a mom, I assumed that my kids wouldn’t go to daycare because I had images of constantly-runny noses, unchanged diapers, and bored staff. Woah, was I wrong about that one! I’ve been able to find daycares that are run more like schools, so my kids are learning, having wonderful social interactions, and making cool art projects. They’ve also become very close with their teachers, and I love to see those special bonds forming. So I am pro-daycare, if you can find the right place.

This happened before I found the right place…

Emmy was too young to attend Charlotte’s daycare, which we’ve been very happy with, so I needed to find a place that would take younger children. And I needed to decide when I would drop the words “Williams syndrome.”

Here’s the thing. Not all parents reveal that their child has a diagnosis. They don’t want a label, they’re worried about their child getting into the school, the don’t want their child treated any differently, etc. I empathize with all of these concerns, and I’ve thought about the same things myself.

In my case, though, I knew I had to tell the school about Williams syndrome. First, I knew that our pediatrician would have to fill out a Universal Health Record before Emmy started school, and that it would say “congenital heart defect due to Williams syndrome.” So the cat would be out of the bag at some point. Second, I figured that the teachers would pick up on her delay and ask me about it. I didn’t want to have to fib my way out of that one. Third, my memory is not great. I would never have remembered who I told or who I didn’t. That’s part of the reason I don’t keep her diagnosis a secret from anyone. I would literally have to carry around a notebook and jot down who I told and who I didn’t — and hope that those people never run into each other!

Ok, so I knew I was going to tell. I just didn’t know when or how.

I called the first school and asked if they had room in their program for her age group. The Director said, “Yes. Come on over.”

I hopped in the car and mulled over how I would tell him about Emmy. When I arrived, he offered me a seat in front of his desk. All I could think was: Williams syndrome Williams syndrome Williams syndrome. He told me a little about the program. I nodded and smiled. Williams syndrome Williams syndrome Williams syndrome.

Finally, he stopped talking and asked me about Emmy. He wanted to know if she was either cruising or walking because that would determine her classroom. They had room in both. At this point, Emmy was barely cruising. She was holding onto furniture, but she wasn’t cruising with ease. I knew, though, that if I didn’t talk her up, he would put her in the infant class with the kids who weren’t walking at all. I didn’t think that holding her back, in that sense, was best for her development. She needed to learn from the kids who were already walking. She was also closer developmentally to her own age group than to an infant.

So I took a deep breath and confidently said, “Yes, she’s cruising. She’s been a little slower in that respect because she has Williams syndrome.”

Cat’s out of the bag!

I swear his eyes nearly popped out of his head.

“And what’s that?” he asked.

I told him about Williams syndrome and, in doing so, I realized that I was apologizing for my child. I was emphasizing that she was practically typical and that Williams syndrome was no big deal. Honestly, I felt gross. I was sugar-coating. I wasn’t being real, and I wasn’t being true to my child. When I saw the look of concern on his face, I just kept laying it on thick — how Williams syndrome would be no problem at all. I didn’t dare say that she might need help on the playground or with art projects. I didn’t mention how great it would be if her Early Intervention therapists could come and work with her. I acted as if she would be just fine with no help whatsoever. And then I sat back and waited for his response.

He looked incredibly uncomfortable. He didn’t embrace the situation. Instead, he probably heard nothing I said after the word syndrome. He nervously said, “Ok, let me go check back in with those numbers and make sure that we have room in the cruising class.”

He walked away and came back with a post-it note that had a number on it.

“Turns out we’re at our limit!” he proclaimed. “I thought we had room, but I was wrong. But I’ll certainly give you a call if anything opens up.”

I’m sure he was lying. On the phone, they had room. In person, after my revelation, they were suddenly booked.

I got back in the car, feeling sick, and drove to the next daycare. I debated not revealing her Williams syndrome this time, but I knew I had to for all the reasons I mentioned above.

This time, I toured the school first and then sat down with the Director who said they had one more slot. Great! She couldn’t back out on me now.

I then told her that Emmy has Williams syndrome and, to my horror, I fell back into that sickening apologetic tone. At one point I even said, “You wouldn’t even know there was anything wrong with her.”

UGH. OUCH. I couldn’t believe those words came out of my mouth.

The Director smiled sweetly and replied, “But there isn’t anything wrong with her.”

I felt awful. Here was a stranger who needed to tell me that there wasn’t anything wrong with my child. But talking to her made me feel like I was getting somewhere. I felt as though she understood and was ready to accept Emmy with open arms.

She then asked if Emmy had any medical issues. I said that she has a heart problem due to Williams syndrome but, here we go again, it’s no big deal.

Heart problem?? The air left the room. Her attitude of acceptance turned into a brick wall. This sounded like a liability.

“Welllll,” she started. “You know I’ll have to check with Human Resources about that.”

People have since told me that it’s illegal to not accept someone with a heart condition, but I haven’t done enough research to confirm that. All I know is that, when I called her later to see if she had checked with Human Resources, she said she was mistaken and that they actually didn’t have room for Emmy. The class was full.

So the woman who just told me that there was nothing wrong with my daughter was able to find something wrong. Thanks for the life lesson, lady.

I felt disgusted. I had basically sold my soul to explain away Williams syndrome, and both places rejected me. I felt as if I weren’t giving Emmy the credit she deserves. Instead of proudly embracing what was special about her, I was apologizing for her and explaining her differences away. And they didn’t take her anyway! All of my sugar-coating got me nowhere.

So I decided to speak honestly and openly about Williams syndrome. It is harder for her to do things. But, damn, does she try HARD at everything she does. She perseveres like no one else I’ve seen. And her sweet personality is just such a gift. I’m so proud of this girl.

Just as I resigned myself to not finding a place that would take her, there was a phone call from another school that we had been trying hard to get into. We had been on the waiting list for a while. They were packed but found a spot for Emmy a few days a week. The Director was so welcoming and, when I talked openly about Williams syndrome, I didn’t scare her away in the least. She said that she couldn’t wait to meet Emmy and that they were so happy to have her. I asked if we could have some of her Early Intervention therapists there to help her, and she responded, “Of course!” She didn’t freak out about Emmy’s heart or about her lack of walking. She wanted to put Emmy in with her age group, which I whole-heartedly agreed with. It felt good, finally, to be heard and understood.

Thinking back on my “apologies” for Emmy makes me feel icky to this day. Hey, this diagnosis isn’t her fault! She did absolutely nothing wrong. Through a completely random genetic event, she was made this way. And, boy, do I love everything about her.

So this whole experience, while stomach-churning in parts, gives me the confidence to say:

I am no longer apologizing for the special needs of my very special child. 

Love you, kiddo.

Tradition

Tradition

My husband is really into tradition. I mean, REALLY into tradition. Actually, the very first post I wrote was about how he buys green bagels every St. Patty’s Day: https://williamssyndromesmile.com/2013/03/17/green-bagel-morning/

He doesn’t just keep old traditions alive, though. He also spontaneously creates new ones! I was heading home with the kids when he called to say that he put the holiday lights on the house and wanted Charlotte and Emmy to turn them on when we arrived.

“It will be a tradition!” he declared.

I love that Dan doesn’t live by the same imaginary rule book that I have in my head. My rule book says that I preserve the traditions that were handed down to me, but I don’t create new ones. Who am I to create a tradition? Those things were carefully thought out by my ancestors! But Dan has no qualms about creating a tradition TODAY.

And I’m ashamed to say that I kind of brush them off (sorry, babe). Traditions are not as weighty for me. I have a few precious traditions surrounding Christmas that remind me of childhood but, other than those, I don’t really think about traditions for the rest of the year.

Over the weekend, I found myself really appreciating the fact that Dan keeps traditions alive when we got the tree and decorated it. And as the kids put ornaments on the tree, I was so aware of how this tradition forces you to be present. It forces you to put down the phone, look at every ornament, tell stories about the ornaments, find the perfect branch, take photos to capture the moment, admire how your daughter is so careful with the precious ornaments when just last year she would’ve been the opposite, notice how your daughter carefully stands on the stool to reach the top branches, and realize how much taller she is than the year before. When you’re decorating the tree, you are forced to be in the moment.

How many times do I swear I’ll appreciate every moment–and then still let all of them pass me by?

And how many times do I swear I will PUT DOWN MY PHONE…and then will see it calling to me from the table?

“Put it down, woman!” I want to shout. “Put it down!” Because when I’m looking at my phone, I am anywhere but in the moment.

I think it doesn’t matter so much when I’m in the check-out at the grocery store and the person in front of me has 1,000 bags of candy to ring up, and I am just passing the time by looking at my phone. I think it DOES matter a lot when my kids need my undivided attention.

On Saturday, I was at a kids’ gym with Emmy, waiting for her class to start. I was watching the previous class wrap-up through the large, glass windows. And here was a boy, probably less than 1 year old, throwing a ball to his dad. And here was his dad, looking at his phone. The ball just fell in his dad’s lap, and he didn’t even notice his son’s effort. Ugh. What are we becoming?

So if traditions, like decorating the tree, do nothing more than force me to put down the phone and be present, then I am incredibly grateful that my husband creates new traditions every week. The more, the merrier! This time with our kids is precious and fleeting. The celebrity gossip and articles with snarky comments that I read on my phone will be around forever.