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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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. 🙂

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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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Pamper Yourself

PamperYourself

Some people have yoga. Others have meditation. I have the mall.

No, not them all. THE MALL. 🙂

I haven’t been to the mall in a while. I mean, I haven’t been to the mall by myself in a while. Sure, we run into the Lego store, chase the kids around a bit, have a quick dinner, and head home. We’ve done that a couple times. That’s not relaxing.

But there’s something that happens when I go into a mall alone. It’s a very particular mall, actually — the one I used to go to as a young girl. The elevator music has a calming effect, the perfume-y smell is enchanting, and the tile under my feet feels familiar. I used to go to this mall a lot as a kid, and it brings me right back to childhood. My cares melt away. I’m a kid again.

I haven’t been to this mall in a long time, though. First of all, I don’t have a ton of alone time to go wandering around malls aimlessly. And second of all, I think about the money aspect. It’s not exactly like I’m independently wealthy. Third, I have 10,000 other things to do with my time — things that are seemingly more productive like cooking, cleaning, working on a project, procrastinating…important things.

Well, I’ve been craving a vacation. The heavy winter has gotten me down, and I’m turning into a shut-in.

Out of the blue, the mall beckoned me with its promises of pampering.

But, no, I argued. I can’t waste time at the mall. I have things to do.

Yes, that’s true. But when are we allowed to pamper ourselves? We jump from one thing to the next and find ourselves way down at the bottom of the totem pole. It’s self-inflicted though. If I told my husband that I wanted to go to the mall alone, he’d usher me right out the door. It’s not that other people are holding me back. It’s that I’m holding myself back. I think of all the practical things that I should be doing, and wandering around the mall with zero purpose is anything but practical. I also feel guilty taking care of myself. How can I possibly spend time on myself when I have other people to take care of?

I watch The Real Housewives (because who can look away), and I see how these people pamper themselves. The hair, the nails, the outfits. Who has time for that? I just reason that their luxuries come from being so rich. Of course they have time to do their nails. Then again, I’m sure there are rich people that don’t take care of themselves like these ladies do…

How much time would it take me to put on makeup in the morning or pick out a cute outfit or do my hair? I actually haven’t gotten a haircut in almost a year for two reasons. One is that I have better things to do than sit in a chair for an hour (so I say). And the next is more practical. I have curly hair, and other girls with curly hair will backup the fact that things can often turn disastrous when someone is cutting into your locks. I’ve had some really weird, eccentric cuts done in a salon because it’s fun to experiment with my hair. So I try and stay away.

But then I’m at the point where my hair is a frizz-ball, my face is screaming for moisturizer, and my clothes are wrinkled. Is this really what it means to be busy? Or is this something else? LIKE NOT CARING ABOUT ONE’S SELF?? (Didn’t I learn anything from this post last year? https://williamssyndromesmile.com/2013/07/15/self-care/)

Enough, I say!! It’s time that I put on my Real Housewives facade and pamper myself.

So, for the first time in a long time, I went to the mall alone. Just me and my thoughts. I took my time eating lunch. I walked into all the stores — up and down the aisles until my feet hurt. I bought some body lotion for my super dry skin. And I just let myself be. I tried not to judge if this was a proper use of my time. I just let myself enjoy it for what it was — a day of pampering.

And, as I drove home, I made the bold move of calling a salon to see if they would take me and my frizzy hair. They had an opening! Funnily enough, getting my haircut wasn’t the nightmarish time-waster that I imagined. It took a half hour and was easy as pie. The hairstylist also happened to be a curly specialist, so I lucked out.

Because I took a little time to do some pampering, I feel completely amazing. That’s all it took. Just a few hours of wandering around a mall plus a haircut, and suddenly I’m rejuvenated for weeks. I didn’t have to spend David Foster’s money (Real Housewives reference) to get to this point. It cost me a few hours and a couple bucks. Totally reasonable.

I think everyone needs to waste time on his or herself every once in a while. And I don’t think that sitting in front of the tv like a zombie or playing on one’s phone counts. I mean really, foolishly wasting time doing something that you wouldn’t normally do — preferably outside of the house. Just waste time for a day and don’t judge yourself. A little pampering goes a long way.

To my husband: This goes both ways, you know? I want you to tell me how you’re going to waste time on yourself one day this weekend. No judgement or guilt allowed. Just some good, solid pampering.

What About Me

WhatAboutMe

I’ve been waiting for this day. Although I certainly haven’t been looking forward to it.

We got our first “What about me?” And it made me feel AWFUL!

Ever since we found out that Emmy has Williams syndrome, I was conscious of how it would impact Charlotte. In the beginning, Charlotte had no idea that there was anything different about Emmy. But, as time has gone by, we’ve had conversations about heart surgery and Williams syndrome and how things are more challenging for Emmy.

Charlotte clearly doesn’t notice any differences yet with Emmy. She’s just her sister. Period — end of story. But now she’s started to take notice of all the special treatment Emmy gets. The additional doctors’ visits, the therapy sessions at school; the meetings with therapists at home.

One wouldn’t think that she would be envious of doctors’ visits, but she is! Charlotte actually loves going to the doctor and dentist. (I’m sure Emmy would gladly trade places in that respect because all hell breaks loose when Emmy senses that she’s going to get poked and prodded by someone.)

And Charlotte is envious of the therapy sessions because they look like fun! Emmy is spending time with really nice therapists who play games with her and cheer her on. What’s not to like?

Well, all the special treatment has started to add up, and it came to a head yesterday when we had an Early Intervention meeting with Emmy’s team of therapists to discuss her goals. Charlotte was supposed to be at school, but it was cancelled. So she got to watch everyone fuss over Emmy some more…and it wasn’t fun for her. She wanted to be fussed over. And in her effort to get attention, she jumped on the couch and tried to get somebody — anybody — to focus on her. Of course, this resulted in a lot of wild bouncing around, and it was hard for me to try and hear what the therapists were saying. It was difficult to manage the situation, but I tried not to get frustrated with her. I know what she wants because I would’ve wanted the exact same thing when I was her age.

The thing is that I’ve been trying so hard to over-compensate for Emmy’s special attention. I wanted to head this off before it started. I didn’t want Charlotte to ever feel ignored. So my husband and I both take her for one-on-one time every weekend. We also signed her up for soccer, gymnastics, and swimming, and we try and make a big deal over all her various activities. My husband even coached the soccer team! I take her for mani/pedis. I read to her. I snuggle with her. I do arts and crafts with her — just the two of us! I try everything in my power to make her feel like she’s special too!

But yesterday when all the therapists left, her face fell, and she said, “What about me?”

She wanted to know, “Why doesn’t anyone get together to talk about me?”

And she’s right. All the outside activities that I do with her don’t compare to the fact that a bunch of people sit in a room and talk about Emmy for an hour. How can I possibly recreate that situation for Charlotte? I don’t know…

I told her that I talk about her and how awesome she’s doing with her teachers all the time, but that’s not the same…

The thing about Charlotte is that we don’t have to sit in a room and talk about how to get her to open a Ziploc bag, or climb the stairs, or keep her balance. She does all of those things beautifully. They’ve never been a struggle for her. Every single goal we set for Emmy yesterday are things that Charlotte has already met. And they all came easily to her. I don’t think I ever had to teach her how to use a fork and spoon. She just did it.

And I’m so conscious of the fact that she is very sharp. This morning, Charlotte was playing with her dolls, and I heard her doing math very quickly! She was saying, “What’s five plus three? Eight! What’s two plus seven? Nine!” I mean, she was QUICK. I was really impressed. And I told her so right away! She’s also really good at gymnastics — very strong and fearless. I watch every gymnastics’ practice. I take videos of her hanging on the uneven bars and send them around to family members. I celebrate her artistic talent and hang up her paintings.

But kudos from mom doesn’t compare to a bunch of people sitting in a room and reviewing her accomplishments for an hour.

So with all of my attention and praise, I don’t know how to recreate that aspect — that type of special treatment that doesn’t apply to typical children. The therapy sessions, the doctors’ visits, and the goal-based meetings. How does an arts and crafts session with mom compare to those things?

If anyone has suggestions, I am all ears! Maybe I can have relatives dress up as strangers and come over to discuss Charlotte’s progress. 😉 I’m picturing my mom with a funny hat on and a feathered mask over her eyes…yikes!

Or maybe the answer is just to keep stressing that things are harder for Emmy and, while these therapy sessions seem like special treatment, Emmy would rather not have to work harder than everyone else. That’s not an easy concept for a 4 year old to understand though. Especially because she notices how Emmy loves getting doted on by her therapists. It certainly doesn’t look like hard work to Charlotte!

I just want to do it right. Like every other mother out there, I have guilt up the wazoo — both for things that have and haven’t happened yet! (I love that I already have guilt for things that haven’t happened yet, by the way. So silly yet so true.) I want to get on the right path, but sometimes I don’t even know where to start.

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.