A Parent’s Heart


Today I offer only this quote:

“Through the blur, I wondered if I was alone or if other parents felt the same way I did – that everything involving our children was painful in some way. The emotions, whether they were joy, sorrow, love or pride, were so deep and sharp that in the end they left you raw, exposed and yes, in pain. The human heart was not designed to beat outside the human body and yet, each child represented just that – a parent’s heart bared, beating forever outside its chest.”

-Debra Ginsberg

A Master of Should


I am a master at using the word “should.” Here’s what I thought when I went back and looked at this Daddy/daughters picture:

  • It should be in focus.
  • Everyone should be sitting next to each other with gloriously happy smiles.
  • I should be able to see the girls’ matching shirts which say “Daddy’s little sweetie.”
  • I should be able to see more of Dan’s face than just 1.5 eyes.
  • Emmy should not be crying.

In other words, this picture is a failure, right?

On the contrary. I think it’s one of my favorites.

When I look closer, I see the following:

  • Charlotte’s personality is perfectly captured (easy-going nature, eagerness to please, her headband which is always askew because she likes it that way).
  • Emmy’s personality is perfectly captured (generally happy but can be very quick to get upset, especially when pulled away from Mommy).
  • Dan’s personality is perfectly captured (smiling eyes, comfortable being surrounded by his girls). I looked closer and noticed his wedding band peeking out behind his oldest daughter. His original wedding band was lost to the ocean on our honeymoon. This one was much cheaper but still holds the same value, in my eyes.

Maybe when things are not as they “should” be, that means they are just right.

We took Emmy to the doctor today. It’s the same hospital where I gave birth to Emmy and, every time I go back there, I’m flooded with the emotions of that time. We didn’t know Emmy had Williams syndrome, but she was in the NICU for 8 days, and the entire experience was emotionally painful. The hospital staff was wonderful and they did their best to console me, but it was very sad to be separated from Emmy right at birth and then not be able to take her home for an entire week.

I found myself thinking: “It should have been different. Emmy should not have been blue when she was born. Emmy should not have had heart problems. I should have had the happy hospital stay that most new moms have…” The laundry list of shoulds continued.

Then I stopped myself. What can defeat a case of the shoulds? Acceptance.

I accept that I had an emotionally rough stay in the hospital. I accept that Emmy was in the NICU. I accept that she was not 100% healthy. I accept that things did not turn out exactly as I expected.

I accept it, and I am grateful for all that I have.

Going to the Chapel


I’ve been thinking about Emmy getting married. Yes, I realize she’s only 1.5 years old. Hear me out.

When Emmy was born, I thought that her life was full of limitless possibilities. The world was her oyster. She could be President. She could be an astronaut. She could be a lawyer or a doctor or a professor. Anything at all. There is joyful freedom that comes with telling a child, “You can be anything you want.”

Five weeks after Emmy was born, I found out she had Williams syndrome and looked online to find out more details about her condition. Within seconds, I was distraught to see all the things that she might never do: drive a car, live on her own, pursue a career, get married, have children…

There is nothing quite like sitting on the couch with a beautiful newborn baby in your arms and staring at a long list of things that she may never do. My limitless world of possibilities vanished, and I found myself hoping that she would be able to just cross the street or tie her shoelaces.

Early on, the topics of marriage and children were constantly on my mind. If my children don’t want to get married or have kids of their own, that is totally fine with me. But I always imaged that they would at least have the choice to do either of those things. I couldn’t get over the idea of Emmy’s choices being taken away right from birth.

Williams syndrome was not in either of our families before we had Emmy. It was a totally random (1 in 10,000) occurrence. However, if Emmy has children, she has a 50% chance of passing it along.

I struggled with the marriage and children questions for a while and then finally managed to file them away into “things to worry about waaaaay down the road.”

Well, last night the questions popped back up again. We rented a lovely documentary called Monica and David about two people with Down syndrome who got married. JUST BEAUTIFUL. I highly recommend renting it on Netflix. It illustrated so clearly how people with special needs want the same things as everyone else. Above all, they want to feel love and connection. That is really the basis of all human life. And when Monica and David expressed their wish to have a child, to the dismay of their family members, it was because they had so much love to give.

There is an image that keeps scrolling through in my mind. The image is of Emmy playing with a baby doll and saying, “I am the mommy, and this is my baby,” as Charlotte has done countless times before. It’s the image of Emmy saying, “When will I be a mommy?” as Charlotte has asked countless times before. It’s the image of Emmy saying, “When I have a baby, you will be the grandma, right?” as Charlotte has reasoned before.

And then there’s the question that I’m left with every time this image passes through my mind: What do I say when this image becomes a reality?

I don’t know the answer yet, but I know that I want Emmy to have all the limitless possibilities that I originally envisioned for her–before I knew about Williams syndrome. I want her to have choices, and I’m trying to figure out how to make that happen.

Feeling the Fear


I am living in a place of fear right now. I have a friend whose child is in the hospital recovering from heart surgery. My own child is scheduled for heart surgery in a month. My friend, Erin, posted the most heart-wrenching story on her blog, which has just rocked me to my core: http://edivaput.blogspot.com/2013/04/when-it-just-isnt-fair.html

And then of course there is the horrific event coming out of Boston and that sweet boy’s picture on Facebook holding up a “Peace” poster.

I am living in the middle of fear. I must admit that a large part of me feels comfortable in a place of fear. My first reaction to any uncertain circumstance is usually fear, so this emotion feels spot on.

But I am very much aware of the anxiety in my chest, the constant nerves; the guzzling of caffeine which only makes it worse. Recently, I’ve found a new way to address fear which is to eat. I take those Lindor truffles that are only 73 calories each…and I have 10…in an hour. I fantasize about the rosemary fries at Smashburger. I eat slice after slice after slice of cheddar cheese.

Finally, I confided in a wise friend who replied that I was feeding the fear to make it go away.

I hadn’t even realized it. Instead of feeling the fear, I was feeding the fear.

The problem with that (besides the tight pants) is that even though I’m stuffing, I’m still feeling everything under the surface. The emotions are still there, bubbling up. They haven’t gone away.

Now that I realize what I’m doing, I can look at myself objectively.

“Self, why are you doing that?” I ask.

“Self, you know exactly why you’re doing that,” I answer. “You don’t want to feel.”

But, self, it’s natural to feel. It’s completely human to feel afraid and sad and upset and angry. And then it’s beautifully human to feel support and connection and love and generosity. And then it’s entirely human to feel hope and bliss and joy. It’s normal to feel all of it.

I don’t think that living in a place of fear is a good place for me. But I recognize it and look at it objectively and reach out to others and hope that there will be great joy on the other side.

Salt Water


Salt water is nature’s remedy. When faced with difficult circumstances, I make a hasty retreat to the beach.

I don’t mean “retreat to the beach” as in “put on a bathing suit and sunscreen and relax on the sand.”

My version of going to the beach over the past few years has been more like “put on two sweatshirts, sit on a bench in the cold wind, and gulp in the salty air.”

It helps.

In some ways, we’ve had a tough few years. Dan’s mom died in 2010 from cancer. Dan’s dad died in 2012 after many years battling Parkinson’s disease. We found out that one of our daughter’s has a genetic condition that is coupled with medical issues. And now she’s due to have heart surgery next month.

But, despite all of this, the last few years have also been wonderful. I’ve given birth to two precious children, and we learned about a fascinating genetic condition that has brought a lot of love and community into our lives. We have also leaned on each other, which has made our marriage stronger. Over the past few years, we’ve come to the beach many times to have the salt water heal our wounds, and I’m thankful that we’re in this together.

I told Dan that, when I met him in 2002, I never could’ve imagined what life had in store for us. I was sitting at my desk with an eye on the door, when the “new guy” walked in. His boss started introducing him around the office, and I couldn’t wait to get to know him. Maybe it was the facial hair.

I thought back to myself at that time, caught up in the excitement of meeting the love of my life. Really, I didn’t have a care in the world, and it went on like that for quite some time.

In certain ways, I’m surprised at what life has brought our way. And in other ways, I feel as though we’re right where we need to be. These were our lessons to learn.

This week hasn’t been easy. I’ve had an imaginary little bird on my shoulder whispering “heart surgery heart surgery heart surgery” in my ear–constantly. It reminds me of the same little bird that whispered “Williams syndrome Williams syndrome Williams syndrome” after Emmy was born. I hadn’t heard from that bird for a while, and I’m sorry he’s back. He’s giving me a migraine.

So it felt good to go to the ocean and give my problems over to the salt water.

And as I walked down the windy boardwalk with Dan by my side, my migraine started to dissipate. I was comforted by the fact that when Emmy goes in for surgery, I’ll have a strong hand to hold.

I May Throw Up


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


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 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.”

Present Living


I’ve never been good at living in the present. Everyone always says “Enjoy the moment!” or “Make every second count!” and the pressure of it all makes me nuts. I think I’m hardwired to live in the past and the future (usually the future).

When I live in the present, it’s because I’m actively trying.

Over the past few months, I’ve made a conscious effort to live in the present, even if it’s only for 5 seconds every day. Really–sometimes I can only get 5 seconds of present living before I’m back to the future!

I learned my lesson the hard way. I used to live for the weekend. Every Monday, I’d begin my race through the week with a steady eye on the weekend. Here we go–flying through Monday, skipping over Tuesday, sailing through Wednesday, almost there Thursday, finishing with Friday, and HELLO SATURDAY AND SUNDAY!! LET THE FUN BEGIN!

I wasn’t living. Every single week, I was wasting 120 hours and enjoying 48 hours.

Now here’s where my real problem came in…

Let’s say Saturday and Sunday were crappy days. Let’s say I had some obligations to fulfill and didn’t even get to enjoy Saturday and Sunday.

Now I’ve wasted 168 hours, and I am PISSED.

But here we go–sliding into Monday morning and the cycle begins again!

Finally, something jostled in my brain. One useless idea moved to the side to make room for another that said, “How about enjoying the present?”

Ever since then, I’ve been trying hard to make that happen. I want to be a participant in my life. I want to actively live it.

Today we went for a walk in the woods and, for a good 20 minutes, I didn’t think about the past or the future. Twenty minutes is a major accomplishment, so thankfully it seems to be getting better with practice.

Forever – is composed of Nows –”     Emily Dickinson



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.

Being Vulnerable


I’ve had a scary realization. I’m at my best when I’m vulnerable.

A lot of people were surprised with how personal my blog is because I’ve made a practice out of being stoic and reserved. I once went 5 years without shedding a single tear and loved to brag about it. I used to proclaim, “I don’t cry!” as if it were something that deserved an award.

I didn’t start out that way. When I was younger, I was very sensitive. I would readily reveal my feelings (in many aspects of my life–love, friendship, etc) expecting that the other person would respond in kind. Wow, did I get burned.

When I was in elementary school, I found a friend who wasn’t really a friend, and she announced to the entire class that I had a crush on the most popular boy in fifth grade. Let’s call him Billy. I remember feeling betrayed when that girl came over and whispered, in a snakelike fashion, with blood practically dripping from her lips, “I just told everyone that you have a crush on Billy.”

My heart stopped. Would my Prince Charming finally announce that he’s interested in little old me?

Then Billy came sauntering over and said, loudly and proudly, “Just so you know, I DON’T like you.”

Everyone laughed, and I cried for the rest of the day. IT WAS AWFUL. I can put myself back into the feelings of that scene very quickly.

This pattern repeated itself time and time again, and I retreated further and further behind a protective outer shell. At a certain point, I’m not sure that I even knew what my real feelings were, and I certainly didn’t reveal them to anyone else.

Over the past few years, the concept of vulnerability has kept popping back into my life, and I’ve finally become more willing to explore it. I became vulnerable when I found a partner in life who I can tell anything to and not fear his opinion of me. And thank glory I found him. I dated a string of zeros before meeting Dan. I also became more vulnerable when we had children, one of whom has medical issues that make me worry every day. And then I started to open myself up to new experiences, new people, and a level of openness that I hadn’t touched since childhood. And my life started to take on new, vibrant colors.

It’s scary to be vulnerable, but I have no doubt that it’s where I’m supposed to be.