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.

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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Party of Five

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We’re going to have a Party of Five in June! I’m excited, nervous, happy, and hungry.

I’m trying to be calm and zen during this pregnancy, and I feel like I’m doing a pretty good job so far. My pregnancies with both Charlotte and Emmy were roller coaster rides, so I’m doing my darnedest to take everything down a notch this time.

You know how, when you’re young, pregnancy seems like the easiest thing in the world? Here’s how I imagined it at first: You get pregnant. You glow. You eat a lot. You pat your growing belly and smile. You decorate the nursery. You go into labor. You deal with some pain at this point, but you’re immediately given your beautiful baby as a reward. And your life becomes perfect.

(I thought that not only was pregnancy easy, but that parenting was easy too. HAHAHA. I guess I’m an idealist…or naive. Probably naive.)

But, as life has gone along, I’ve seen all different sides of pregnancy. There are the glowingly perfect pregnancies, and I am thrilled for them…while also being slightly jealous. It sounds like most celebrities have perfect pregnancies, but maybe they’re only giving us one side to the story. I’ve also become very close with people who have tragically lost babies, who have had trouble getting pregnant, who have had very challenging pregnancies, and who have found out that their babies needed to have surgery right after mom gave birth.

I also have a very cool friend who delivered her baby BY HERSELF IN HER LIVINGROOM because the baby arrived so quickly. My friend wrapped her baby in her jeans and waited for the ambulance to arrive. This happened in 2012, not in 1970 or something. I will forever be impressed by this woman.

I didn’t expect any of these stories, though. I had one vision of pregnancy, and I thought everyone fell into that category–except maybe .1% of people.

I think it’s important to be sensitive to other people’s stories. I’ve learned this both in pregnancy and in having a daughter with special needs. I’m really drawn to people who are humble. It means a lot to me when someone says, “I haven’t experienced what you’ve gone through…but I get it.” If I had a magic wand, I would get rid of all the gloating in the world. I don’t think it gets us anywhere. I met a mom at a playground once who was trying to one-up me on all the things Charlotte wasn’t doing but that her daughter was doing. Yikes, does that rub me the wrong way! It’s not about putting your story in a better light. It’s about understanding that all of our stories are unique and important. We can learn a lot from others, and I feel so much love for the people in my life who have gone through so much.

So here’s my story: I found out that I had a bicornuate (“heart-shaped”) uterus shortly before I got pregnant with Charlotte in 2008. This sounded like the worst news ever, and I was beyond devastated. I’ve come to find out that it’s not as awful as it sounds. My uterus didn’t form completely when I was born, which is really bizarre because that means I have a birth defect that I didn’t even know about until I set out to have kids! My uterus stopped short of the upside down triangle and, instead, formed into a heart. I know the heart sounds lovely, and so many of my friends tried to put a positive spin on it. But I was REALLY mad at my uterus for a while. I felt like it deceived me.

Of course, I immediately Googled “bicornuate uterus” and devoured all the horror stories. (I’m good at that. I tend to skim over the good stories to get to the real doozies.) The biggest problem is that I could go into pre-term labor.

So for my entire pregnancy with Charlotte, I was a mess. I let my mind go to all the bad places it could go, and I white-knucked the entire pregnancy. Because of the bicornuate uterus, I’m considered “high risk” so I also had a lot of doctors’ appointments and ultrasounds, which just made me more nervous.

You get the picture. I suffered mentally for 9 months. PHYSICALLY, I was doing pretty well! I had some minor issues that had nothing to do with my bicornuate uterus and were all resolved (like the time I fell flat on my stomach at 9 months pregnant…). But I wasn’t listening to my body. My body was doing great, and my mind was a mess. The two things were completely out of sync. It’s funny how my mind can take a life all on its own with zero regard to what is ACTUALLY going on with my body.

All the bad things I had read about through my endless Google searches never happened. Charlotte was born via C-section at 39 weeks, and she was happy as a clam! Such a good baby.

Ok, so you would think that my lesson would be: Don’t let your mind run away without you. Listen to your body. Do things differently next time. CALM DOWN.

Here we go again. I got pregnant with Emmy in 2010, and I started to follow my own advice. Caaaaaalm down. Don’t worry. Everything is going to be fiiiiiine.

I was doing awesome until 7 weeks along, when I had heavy bleeding–the likes of which you would not believe. My mind immediately went back to panic mode. We had an ultrasound that showed Emmy was fine, but I was a nervous wreck for the rest of the pregnancy. I couldn’t get back to that zen place again. Also, Emmy was always measuring small. We’ve come to find out that this is pretty common for Williams syndrome, but we had no idea that she had Williams syndrome until 5 weeks after she was born. So the fact that she kept measuring small seemed odd to me and, again, made me nervous. I was still considered high risk and had all the doctors’ appointments and ultrasounds that you can imagine, which heightened my nerves even more.

But, again, for the majority of my pregnancy, I was fine physically. It was the mental aspect that took a toll on me–again! Even though I swore it wouldn’t.

Emmy was born via C-section at 39 weeks. She had a lot of problems right out of the gate and had to go to the NICU–and then of course we got the diagnosis of Williams syndrome a few weeks later. But we didn’t know about any of this during pregnancy, and I could’ve saved myself a lot of stress while I was pregnant if I just focused on how my body was feeling instead of paying attention to my over-active, always-working mind.

So here we are with Baby #3–a boy! And I have a whole HOST of problems. But I think I have finally learned my lesson. I refuse to let my mind get away from me this time.

The first problem is that I have a thin window on my uterus. Basically, this means that part of my uterus has been deemed “paper thin” and, if I were to go into labor, my uterus could rupture. My second problem is that, because of our history with Emmy, we have to do more in-depth ultrasounds to make sure that there are no heart issues. No one thinks this baby has Williams syndrome (though it would be pretty amazing, considering it’s a 1 in 10,000 completely random event). We’re no more likely to have another baby with WS than any couple would be to have a first baby with WS. But when one of your babies has a genetic issue, they do want to look closely to make there there is nothing else that we need to be aware of. (For instance, if the baby had a Congenital Heart Defect, which is a 1 in 100 statistic, we would have to schedule surgery for after the birth etc.) My third problem is that I’m technically still at risk for pre-term labor because of my bicornuate uterus, so I have to get checked more often than your average patient. And, fourth, this baby has a kidney issue, which is apparently common in boys and nothing to worry about–unless it’s something to worry about…and we won’t know that until we get further along.

Given my history, you’d think I would be freaking out, particularly about the kidney issue. But here’s what I’m doing this time. I’m staying grounded. I’m NOT Googling. I absolutely refuse to Google. I won’t go searching for all the horror stories like in the past.

Sure, I have my moments of worry and panic, but I’m able to bring myself back down again.

How am I getting there? Well, I’m listening to my body. I feel…fat. 🙂 But good and happy and comfortable and calm. I’m looking forward to spring. I’m thinking of all the things I want to do with my girls to enjoy the last memories of the Party of Four. I love seeing Charlotte and Emmy together. Their sisterly bond has gotten so much tighter. It makes me SO happy.

I want to capture this moment of zen and carry it through to the delivery in June. I want to trust my body, which has proven itself before. I want my body and my mind to be in sync throughout this pregnancy. I want to enjoy and remember many moments throughout this pregnancy. And, this time, I want to savor that pregnancy glow.

What About Me

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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.

Thanksgiving

Thanksgiving

This Thanksgiving has been my favorite so far, and the actual day isn’t even here yet! Just listening to Charlotte recite what she learned at preschool every day has been a lesson in life. At four years old, she’s full of amazement, wonder and fun facts (yesterday was something about white and red blood cells that even I didn’t understand).

I love watching her face as she laughs her way through “The Thanksgiving Song”: “I’m glad I’m not a turkey…They stuff you and bake you, and then they all taste you! I’m glad I’m not a turkey on Thanksgiving Day.”

And every day this week, when she’s climbed in the car after school, she starts excitedly talking about gratitude.

“Guess what I’m thankful for today?” The appreciation for life literally pours out of her.

As I was driving her home, I thought, “At what point does this change?”

Because I’ve certainly experienced it myself. As a child, I had that feeling of amazement and gratitude on a daily basis. I remember bouncing a tennis ball against the side of my garage for hours–just enjoying the sun and the feel of the ball in my hand. I was just happy to be alive. Of course, I wasn’t consciously thinking about being alive. But I was enjoying the moment–taking pleasure in the littlest of things.

And as I got older, that feeling began to seep away. First, there were some mean girls (ugh), and I allowed my spirit and sense-of-self to get crushed. Then there was the sinking feeling that came with getting C’s on Math tests. And then there was the pressures of bills and jobs and life. Sure enough, that incredible feeling of being in the sun with a tennis ball in my hand faded and, in its place, came thoughts of “Why me?” and “I can’t do this” and “Life is so hard.” I kept feeling as though life was just dropping things on my doorstep, and I had to deal with them.

I finally realized that it wasn’t healthy to live that way–to always feel as if life owed me something, and it was my fault for not getting the best out of it. My four year old doesn’t feel that life owes her anything. On the contrary, she enjoys all that life has given her, and she voices her gratitude aloud.

I don’t want that shift to happen for her. Is it inevitable? Gosh, I hope not. How can I help her stay grateful for what she has instead of always reaching for something more? Because that’s where true happiness lies–in looking at what’s around us and saying, “Thank you.”

Today I can make a choice. I can always reach for something more, different, or better…or I can land right where I am. So here’s where I am today: I’m in my soft, colorful pajamas on a Wednesday morning. I’m typing away in the study, listening to the soothing sound of rain on the window. My husband is in the kitchen making mac-and-cheese for the Thanksgiving party at school. My two-year-old is still fast asleep in her bed. And the sound of a happy four-year-old playing make believe floats through the air. Thank you, life.

Pint-Sized Professor

PintSizedProfessor

We’ve been knee-deep in questions lately. At four years old, Charlotte wants to know everything about everything.

I LOVE her curiosity and sharp memory. She really tries to delve down into the essence of any topic. However, the ongoing questions often cause me to realize that I am pretty clueless about the world in which I live. Or I know the answer but can’t explain it very well (especially when it’s, like, 6:30 am).

“What time exactly do skunks come out at night?”

“What does the word ‘theme’ mean?”

“Who are all of the characters in Batman?”

At the zoo, we saw a sign in front of the empty wolf cage that said the wolf was out for surgery. So she asked, “Can you tell me all the possible reasons that a wolf would have surgery?”

WOAH!

And this one was my absolute favorite:

She asked me if I played video games when I was a kid, so I said that I used to play a game called Super Mario Brothers.

Then she asked, “Can you tell me everything about Super Mario Brothers?”

So I replied, “Well, there were 8 levels…I think. And you had to rescue a princess…”

And then she said, “Can you tell me about all of the bad guys?”

I’m pretty sure there were about 500 bad guys in Super Mario Brothers. And most of them are hard to describe, like that brown mushroom thing that you jumped on…but I tried to tell her about every one I could remember.

Here’s the thing: Even though she’s the one asking the questions, she ends up teaching me more than I could ever learn on my own.

We were at my friend’s house this summer, and Charlotte wanted to try swimming in her pool. She is still very much learning how to swim. We practice every once in a while, but she’s just in the beginning stages of learning.

When she got in the water and wasn’t able to swim PERFECTLY, she freaked out. She bawled hysterically and said, “I want to do it! I want to swim!” She had only practiced a couple times and already wanted to be an expert.

I said, “Charlotte, you just started swimming, honey. It’s going to take some time to get really good.”

And she cried, “I don’t want to wait. I want to be perfect now.”

This is SO me. I want to be an expert at everything I do right off the bat. I get frustrated when I can’t master something after 2 seconds of trying. I don’t have a lot of fortitude in the face of adversity. After years and years and years of living like this, I am trying like heck to change. I don’t WANT to be a perfectionist. It holds me back. To me, being a perfectionist doesn’t mean being perfect at everything. It means fear of failure to the point where I won’t try new things unless I know I can succeed.

The strange part is that I was sure I hadn’t passed this down to Charlotte.

I’m conscious of this trait, so I don’t even utter the word “perfect.” I encourage her to just have fun. I am incredibly aware of this thing that I have — this drive for perfection — and how much it holds me back, so I am careful about everything I say to my kids in this regard.

Now that I’m learning more about genetics, I’m convinced that I’ve passed my traits down to Charlotte without even intending to. I think she got the perfection gene.

On the long drive back to our house, I tried to reiterate to Charlotte that she should just have fun and put in hard work and not worry about being perfect because, frankly, there is no such thing! I told her that it’s also ok not to be the best at everything. I was very proud of my speech! Life lesson #375 in the books!

Then she said, “Mom, have you ever not been the best at something?”

ARG ARG ARG. And, now, we turn it around on me.

I have such a hard time admitting the times when I’ve failed. These are certainly not my proudest moments.

But my pint-sized professor wanted an answer.

So I responded, “Sure, it’s happened a lot.”

“Can you give me an example?” came the voice from the back.

ARG. ARG. ARG.

Swallowing my pride, I cheerily said, “Of course! Let’s see…there was the time that I didn’t make the All State Band. That really hurt. But I also realized it was because I didn’t practice my scales.”

Phew. It was good to get that off my chest. And now we could move on to —

“Mom,” came the voice from the back. “Can you give me another example of a time you weren’t the best?”

I took a deep breath and put on a smile. “Sure! There was the time that I got a bad grade on an essay, and I was disappointed because I worked really hard on it.”

Ok, now for another topic —

“Mom…can you give me another example of a time you weren’t the best?”

My ego was officially crushed. For the hour long ride, I had to come up with every example I could think of. Charlotte wanted it all. A perfectionist doesn’t like to admit defeat, and I had to spell out all of the failings I could remember — in excruciating detail.

When we arrived back home, I thought about paying her for the therapy session. A teacher and a therapist in the same package!

Charlotte doesn’t just want to hear the talk. She wants me to walk the walk. If I tell her to just have fun and not worry about being the best, it’s meaningless. I have to show her how I’ve done it in my own life. And, gosh, I’m still working on that one.

What I love is that she’s the teacher as much as she’s the student. Her beautifully probing, curious questions get right to the core of who I am. And, for my pint-sized professor, I’ll do anything.

Gratitude

Gratitude

I have a confession. I can be kind of a complainer.

You probably wouldn’t know it from reading this blog because:

(1) I’m not really focusing on the trivial things about my life. I’m not going to put my to-do list on here, though I would really like for everyone to help me tackle it collectively! 😉

(2) Most of my complaints come when I’m talking. When I sit down to write, I’m able to hone in on the positive.

(3) I am constantly striving to be optimistic. It’s a personal goal of mine. So I’m trying to put the good energy out there!

But, really, I can be kind of a complainer. It’s a quality that I very much dislike about myself and one that I’m trying to change.

So I am proud of a huge stride I made in that direction yesterday!

Yesterday was my 35th birthday. I’m a big, big birthday person. I’ve always enjoyed my birthdays. That has changed slightly as I’ve gotten older and found a few grey hairs but, for the most part, bring on the presents and the cake!

But yesterday didn’t feel much like a birthday — at first. Earlier in the week, Emmy and I traveled to Kentucky to meet with a wonderful team of Williams syndrome researchers, and yesterday was our flight home. Due to bad weather, we ended up getting stranded for 6 hours in our connecting airport, Charlotte (coincidentally, also the name of my older daughter!). This wasn’t just any 6 hours, but the 6 hours around dinner and sleep time. Yikes.

It had been a long trip, and I was exhausted. Not Emmy though! She wanted to run. The airport was packed with people waiting for delayed flights, and Emmy got her exercise running in and out of people and their luggage (with me trailing behind calling “Emmy! Emmy!”). This kid was having so much fun. If someone dared look her way, she would flash a huge smile, turn on her heel, and keep running. In the middle of the running, she would check back in with me for her supply of crackers to keep her going.

It occurred to me that chasing my kid through a busy airport for hours was not how I imagined spending my 35th birthday. It also occurred to me that this is the same kid that had heart surgery a couple months ago, and now her energy was limitless. When people remarked on how cute she was, I just wanted to grab them and say, “Let me tell you what she’s been through!”

When I managed to corral Emmy for 2 seconds, a fellow passenger came up to me and said, “They might cancel our flight altogether. They’re going to make the call at 9:00 pm.”

I stared at her blankly. I had already been at the airport for 6 hours, and this flight might still get canceled? I imagined finding a hotel room and then a taxi, all without our checked luggage and spare diapers. I imagined Emmy jumping on the hotel bed at midnight. I looked over at the flight board. Every flight going to our destination said “Cancelled” next to it. Except ours. Ours still said “Delayed.” There was literally a column of red “Cancelled”s and then our beautiful flight — a shining beacon of hope — that was still holding strong.

And 15 minutes later, they made the call that we were going to take off! I nearly hugged the person next to me. I was suddenly filled with so much gratitude.

We took off around 10:00 pm. Emmy curled up on my sweatshirt, and slept the whole flight. She’s actually quite good on planes. Whenever we board, people always look at me like, “You seriously brought a child on this flight?!” And then when we land, they give me big smiles and say, “She was so GOOD! So QUIET!” She knows how to make friends…

So Emmy slept, and I sat there thinking about my 35th birthday, which was nearly over. I could complain about everything under the sun. For sure, there was A LOT to complain about. I could go on for days.

Or I could switch my mindset to gratitude.

I could start with “thank you”s.

My daughter, who had heart surgery a few months ago, was just running around. Thank you. Furthermore, our flight was the only flight that wasn’t cancelled. Thank you. We were going home! I couldn’t wait to see my older daughter, Charlotte, and I also couldn’t wait to see my husband. Thank you.

I decided that I didn’t want to ruin my birthday with complaints. I wanted to enjoy it. So, while Emmy slept, and as I felt the plane hum under my feet, I kept running a list in my head of things to be thankful for.

I told myself: There are many reasons to want and many reasons to be unhappy. We can find them almost anywhere. Today, I choose to be thankful for what I have.

It was an important lesson for year 35.

And when I saw my sweet husband at the airport, with a big bunch of yellow roses, I was so thankful that he knows that birthdays are special to me too.

For all that I could possibly complain about, today is different. Today I choose to be thankful.

The Secret I Didn’t Know I Was Keeping

Secret

I talk openly about Emmy having Williams syndrome. I don’t tell every stranger I meet but, if it comes up, I’m ok with sharing our experience.

When we first found out about Williams syndrome, when Emmy was 5 weeks old, we were advised not to publicize it just yet. A doctor told us that not everybody would understand what the diagnosis meant, and she wanted people to get to know our family before labeling us as “the others.” As time has gone on, and especially as I’ve gotten incredible support from those around me, I’ve felt much more comfortable sharing our story. I know that some people keep quiet about a diagnosis because they don’t like that their child has a label. But I believe Emmy is much more than a label. If I believe that, and I project it, then I’m hoping others will see Emmy in the same light–as a whole person.

But, in my openness, there was still one person left to tell…

Charlotte is 4 years old, and I was waiting until she was 6 to sit her down and tell her a story that another mom relayed to me. She told the same story to her 6 year old daughter about her son, who has Williams syndrome:

If we look at ourselves as a book, we might be composed of chapters from 1-23. Well, some people are missing a couple pages from chapter 7. (Williams syndrome is caused by a deletion of a region on chromosome 7.) The book is still complete. You can understand the entire story as a whole. But, because there are a couple pages missing, there are some differences from a person whose book isn’t missing a couple pages…

I had it all mapped out. I just needed to wait another 2 years for her to really get it.

While I was waiting, I realized that I couldn’t explain things to Charlotte fully. I couldn’t really explain why we have therapists coming to the house to work with Emmy. I couldn’t really explain why I take trips to Kentucky with Emmy to see a special team of researchers. I couldn’t really explain why she had a “boo-boo on her heart.” I couldn’t really say why we were doing walks with hundreds of people to raise awareness. Sure, I was coming up with decent explanations, but they weren’t getting to the real, core issue.

I longed to tell Charlotte that Emmy has Williams syndrome, but I didn’t know if she was ready. Honestly, I didn’t know if I was ready. I was worried that Charlotte would see her sister differently, and that thought terrified me.

I posed a question to our trusty Williams syndrome community. Was Charlotte too young? And, moreover, how do I even tell her? I knew the book/chapter analogy wouldn’t make sense for her age.

As always, I got lots of great advice. Most importantly, when telling Charlotte, I had to keep it simple and general. Only give her as much information as she needs. She will ask for more when she’s ready.

So, while we were having a nice, relaxing dinner, I exhaled and said, “Charlotte, have you ever heard the words ‘Williams syndrome’ before?”

She shook her head and said, “No. What’s that?”

I was really surprised! I thought, for sure, she had heard us say it. Though, usually, Dan and I say “WS” because it’s shorter.

And here is where my story falters… Because as confident as I felt 2 minutes prior, as much as I thought I was ready to tell her, I doubted my ability to deliver the message correctly. Whoopsie! I dug my hole and couldn’t get out. I gulped and looked over at Dan, raising my eyebrows helplessly.

He came to the rescue and explained that Emmy was born with something called Williams syndrome, and that means that she will do things differently. And that’s why she had heart surgery. And that’s why Mommy takes her to Kentucky. And that’s why teachers come to the house to help her practice going up and down the stairs. He finished with, “But we’re all different. So that’s ok. Everyone is different.”

Charlotte thought about it a second and then offered, “Just like Emmy has straight hair and I have curly hair?”

“Right,” Dan replied.

This launched Charlotte into a 10 minute discussion about her hair versus Emmy’s hair, which made me realize just how precious a 4 year old mind is.

Then the discussion tapered off. And, suddenly, I felt lighter. I didn’t even realize that I had been clinging so tightly to this secret that it was pulling me down. I hadn’t even considered it a secret. I just thought Charlotte wasn’t ready. But, in keeping it quiet, I felt like I wasn’t including her in our lives. Everyone else knew but Charlotte. I didn’t realize that the weight of her not knowing was affecting me so deeply. So I got up from the dinner table and, in doing so, I left that heavy anchor behind.