I May Throw Up

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We got a phone call with a date for Emmy’s heart surgery. It’s a month away.

I was surprised that I didn’t cry. I couldn’t cry. I even tried.

I just felt sick.

The phone call came yesterday and, for the past 24 hours, I’ve felt as though I’m going to vomit.

The threat of heart surgery has been dangling over our heads since Emmy was born. She has narrowing in her aorta. As it gets narrower, it gets more dangerous because the heart has to work harder to pump the blood through.

Now, as her numbers keep rising, it’s time.

I know other families who have been through this. I have met so many incredibly supportive people–both in the Williams syndrome community and in the Congenital Heart Defect community. I lean on them. I also lean on my other friends and family who haven’t been through this before but who feel everything I’m experiencing as though they were walking in my shoes.

I’ve realized this about myself: I’m someone who needs support.

I didn’t think that was the case for most of my life. I didn’t reach outwards. I turned inwards. And I heralded my independence as something that was precious. In the past, I didn’t want to show weakness or vulnerability. Why would I lean on others? What if they weren’t there for me when I really needed them? I didn’t want to take that risk, so I didn’t reach out.

But I have been schooled in the lesson of support. For me, there is no other way. I know I can’t do this alone.

And now, as I finally let the tears flow freely and move past that awful feeling of wanting to vomit, I am so incredibly grateful for the people I know.

Knock Knock

KnockKnock

I’m always curious about how much Emmy understands. She only says a few words, but she probably comprehends much more than I realize.

When I’m driving the kids to school, the car is full of Charlotte’s animated chatter. Every once in a while, Emmy will catch a word she knows and shout it out: “EAT!” or “NAP!” or “MOO!”

This morning, we were making up “Knock Knock” jokes as only 3 year olds can.

“Knock knock,” Charlotte would start.

“Who’s there?” I would ask.

“Banana.”

“Banana who?”

“Banana on your head! HAHAHAHA! Isn’t that funny, mom?”

Charlotte and I went back and forth with our jokes, each more nonsensical than the next.

Emmy sat quietly, watching our banter in the car mirror. Listening to every word–every giggle.

When we arrived at school, I took Emmy out of her carseat and gave her a kiss.

She smiled secretively, curled her little fingers into a fist, gently rapped my shoulder, and said, “Knock knock.”

Attached

Attached

Here’s an easy way to find me…

Look for a cute toddler with a bright smile. Now look to see who she’s attached to.

Why, hello there!

Emmy sticks to me like glue, which is interesting because Charlotte is the opposite. Charlotte has been fiercely independent from Day 1. She has no problem walking into a room full of new people and simply throwing a casual glance back to mom and dad.

Emmy, on the other hand, is either in my arms or clutching onto my leg. If I dare put her down, she turns red in the face and screams at the top of her lungs. She holds her arms in the air, desperately pleading with me to pick her back up.

We were in a restaurant the other night, and I got up to take Charlotte to the restroom. When we were halfway to the back of the restaurant, I heard a piercing scream from the front. “WAHHHHH!”

Emmy didn’t appreciate my disappearance one bit.

Yes, it would be lovely to use the restroom without hearing heart-wrenching screams on the other side of the door. And it’s exhausting to hold twenty pounds of toddler all the time. But I suspect that when she’s a teenager, I’m going to long for these days.

I have a feeling that I’ll miss those little toes following me everywhere.

From the Heart

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Charlotte got a new doctor kit and has been running around taking everyone’s blood pressure and temperature. She says things like “This will only hurt a bit” and then administers a fake shot. I always howl “OWWWW! You didn’t tell me that would hurt!” to make her laugh.

I heard her happily humming as she took Emmy’s blood pressure. She triumphantly declared, “You’re 100% healthy, Emmy! Good job!”

I felt a knot in my stomach. I wish I could capture the innocence of childhood, even though I’m well aware that is fleeting. Charlotte doesn’t know that her sister has Williams syndrome, nor does she know that she has a heart defect which may require surgery in the next few months. Emmy’s narrowing in her aorta has gotten worse and, at our last cardiologist appointment, we started talking about surgery–an inevitable situation that has been hanging over our heads for almost 2 years but has never been so close as it is now.

I have met children with Williams syndrome who have undergone heart surgery, and they are doing amazingly well. You would never, ever guess that these energetic, cheerful children have had open heart surgery.

I also belong to a support group for parents whose children were born with heart defects, so I see first-hand how wonderfully their kids turned out, even after multiple heart surgeries. These kids have 100 times more energy than I do! I have a friend from the group whose sweet son is undergoing his third open heart surgery right now. I’m thinking about them.

It’s something that I never imagined myself facing as a parent. I always thought about washing down scraped knees, pouring orange juice for a cold, and kissing little bumps on heads. The thought of the scary-sounding heart surgery, which seems like something that only happens on tv, never crossed my mind. Today it does.

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Messy Life

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I have a vision of myself in the future. I am totally laid-back and easy going. I wear pajamas till noon, let the kids dump Play-Doh on the couch, and don’t freak out when Emmy tries to put our dog’s bone in her mouth. I’m known as the “cool mom” around town, and my kids brag about how we finger paint the walls.

In reality, I’m kind of OCD. I am very much aware of the slightest thing that’s out of place. This is a great quality to have as an editor. But it’s not so great when I’m trying to raise my children to be more free spirited than I ever was. Charlotte has already adopted my fear of bugs, which makes me realize how easily our children can step right into our shoes.

In my ongoing effort to be more laid-back (let me know if you have any advice!), I didn’t make a peep this morning when the kids threw grass from their Easter baskets all over the livingroom. Where I initially saw a mess, they saw pure joy. They laughed like crazy, and I couldn’t help but appreciate every second of it. It’s the incredible messiness of life.

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I swear I have more to learn from them than they have to learn from me.

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This is How I Feel

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This is Emmy watching her sister leave for school, and this is how I feel right now. After a few weeks of working stealthily on my blog, I’m going to make it public. And all I can think is “Waaaaah I don’t wanna!”

My problem is that I have this little itch that hasn’t gone away since I was 6 years old (that’s a persistent itch!), and it keeps telling me to write. But I’m nervous… I’m nervous about sharing my business around town, putting my kids’ pictures online, inviting others to judge my work…I’m nervous about all of it.

But I also realize that I have a need to share our story. I’ve benefitted from the stories of so many other families, and I’d like to join the circle.

So here is where this particular story begins: The Story of a Smile

And here is a look of hope:

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4 Steps to Family Fun Night

FamilyFunNight

A couple months ago, I broached the idea of having Family Fun Night every Friday. The idea is this:

4 Steps to Family Fun Night

1. We Order Take-Out

2. We Don’t Turn on the TV

3. We Don’t Do Chores

4. We DO Sit Next to Each Other and Play Games

Here’s what I expected…

I pictured Charlotte rebelling. “No Dora the Explorer? You can’t do this to me!”

Here’s what I got…

Charlotte gave me the biggest, brightest smile and said, “Really? Yay! I can’t wait for Fridays!”

A little while ago, she asked if every night could be Family Fun Night. I’ve realized that she prefers our company over Dora’s, and that feels good.

Of course, nowadays, sitting around silently staring at a screen seems normal, and interacting over board games seems foreign.

(I tend to project into the future, so now I’m picturing my kids sitting home during prom, playing Hi Ho Cherry-O with their folks.)

Green Bagel Morning

Greenbagel

My husband, Dan, loves traditions. Two years ago, he decided that green bagels on St. Paddy’s Day would be a tradition. He’ll dutifully go to multiple bagel places and wait in long lines (something I am far too impatient to do). Charlotte loves it. Emmy is still too young to understand the tradition, but she does appreciate a good, green bagel.