Category Archives: Williams Syndrome

By This Time Tomorrow

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ByThisTimeTomorrow

Emmy’s heart surgery is tomorrow. In one sense, I am SO ready for this to be over. In another sense, I am SO NOT ready for this.

Confession: I’m not as strong as you think I am.

I look around at the parents I know whose children who have had heart surgery, some with three and four heart surgeries behind them, and think, “I am nowhere near as strong as they are.” Even in adulthood, I still feel like a kid in many ways. I have a little bit of an immaturity and naivety that has stuck with me all this time. I kind of like it because it makes me feel young and goofy.

But now I’m being asked to step up to the plate and be a strong woman and mother for my family. It’s a tall order for someone who still feels like a kid inside.

I’m also very much aware of how Charlotte is going to feel over the next few days. We have wonderful friends and family who have generously offered to take care of her, and for that I am so grateful. But while half of my heart will be with Emmy, the other half will be with Charlotte. I hope that she will feel our love from far away and won’t feel like we’ve ditched her.

Over the past few weeks, we’ve tried so hard to keep things “normal” around here, for Charlotte’s sake. We’ve been trying hard to remain calm, positive, and playful while dealing with a heavy situation. We’ve read her some really good kiddie books about surgery. She has asked to read them over and over again–several times a day. She is fascinated by the idea of being in a hospital. She asks questions like, “How did Emmy get the boo boo on her heart?” and “Will I get it?” No, it’s not contagious, sweetie.

Even though I’ve tried to stay composed, I’ve been more anxious and nervous than usual. It’s inevitable, I guess. I just hope that thirty years from now, Charlotte won’t hold it against me. I imagine us sitting together on a therapist’s couch when it all comes out: “I hate you for not being a perfect, carefree mom in the week leading up to Emmy’s surgery!” Oh hello, Mommy Guilt, it’s you again!

I’ve also been feeling very uncomfortable with the fact that Emmy has no idea what’s about to happen to her tomorrow. She only knows a few words at this point, like “more” and “open.” The concept of “heart surgery” is not in her vocabulary. In some ways, it’s a good thing because she won’t be afraid. However, I also feel like I’m duping her. She’s happy as a clam and totally oblivious to the major surgery and recovery period that’s right around the corner.

I told my friend that I feel guilty for unintentionally “duping” Emmy into thinking that tomorrow is going to be a perfectly regular day, just like any other. My friend’s advice was to tell Emmy about the surgery–to put it out there even though she won’t understand.

So I sat her down, put my hand on my own chest, and said, “Emmy, listen to Mommy. You have a boo boo on your heart, and you’re going to go the hospital on Thursday to get it fixed. There are going to be nice doctors, and it might hurt a little afterwards. But you’re going to be just fine. Mommy and Daddy will be right there with you.”

She looked straight into my eyes. Then she put her hand on her chest and said “boo boo.” I’m so glad I shared that moment with her. I felt like she understood.

I hope I can get at least a few hours of sleep tonight.

I hope Emmy’s surgery and recovery go beautifully.

And I hope we all end up on the other side of this, stronger than I ever imagined.

Pre-Op

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PreOp3

This is a picture of Emmy at the hospital after 5 solid hours of pre-op. This picture was taken after a 1.5 hour echocardiogram, an EKG, a urine test, blood work, an X-ray, and a few consultations with various doctors.

If it were me, I would’ve been curled up in a ball whimpering and pleading to go home. Emmy, on the other hand, decided to run around the lobby for 25 minutes. As I ran after her, exhausted, I thought, “Kids are tough!”

When we drove to the hospital early this morning, I thought about the last time I was preparing for surgery. Back then, it was a c-section, and I couldn’t wait to meet my daughter. I was beyond giddy. Going to the hospital to have a baby is such a thrilling time. You don’t know who is inside of that belly, and you just can’t wait to see his or her little face.

Driving to the hospital for that same baby’s pre-op for heart surgery is a different feeling altogether. The excitement has vanished. In its place, are hearty doses of fear and anxiety.

“How did I get here?” I kept thinking.

It was a long, nerve-wracking day. I kept my eye on the clock, wanting to rush through it all.

And then I look back at that picture of Emmy who, after hours of testing, was dashing around the lobby. She was waving her hands over her head, saying “Hiiiiii” to anyone who looked her way.

And then I think back to our weekend when we watched this little girl, my oldest, run around happily. She knows that her sister has a “boo boo on her heart” and enthusiastically proclaimed that she would miss her when she goes to the hospital but would see her soon.

PreOp2

As much as I want to fast forward to the future, I am acutely aware of these fleeting moments in time.

I keep thinking, “I want this to be over.  I want this to be over.”

But if I keep rushing through the days leading up to surgery, I’m missing what’s right in front of me. There’s a sense of happiness and positivity radiating off my children, which I’d like to bottle and hold close to my heart.

One Week from Today

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OneWeekfromToday

In exactly one week, Emmy will have heart surgery. I’m still in denial. I keep waiting for the phone call where a doctor says, “Oh my goodness, I am so sorry for all the confusion! Emmy’s numbers were showing up backwards! Whoopsie.”

Or, when we go in for her pre-op on Monday, I’m expecting a nurse to say, “I have good news! The narrowing in Emmy’s aorta has completely disappeared. This kid is healthy as horse. Take her home, and we’ll see you…never!”

It probably won’t feel real until Emmy gets wheeled into the operating room and I’m left behind to obsessively stare at the clock.

There’s a chance that she might need a blood transfusion during or after surgery and, because we have the same blood type, I was able to give a directed donation earlier this week. Dan came with me and donated to the general population because he and Emmy aren’t a match.

The woman who worked at the blood bank was so unbelievably kind as she took down my information. I hadn’t told her who I was donating to because I didn’t want to cry, so I just acted nonchalant.

As she transferred my information onto the form for Emmy’s surgery, she saw her birthdate–July 2, 2011.

The woman looked back at me and, with tenderness in her voice said, “This is for a small child.”

I steeled my jaw, intent on not breaking down, and said, “It’s for my daughter.”

She was so kind and offered comforting words. As I was giving blood, she asked lots of questions about Emmy. It made me feel good to have support, even from someone I’d never met before.

After Dan and I gave blood, we sat down at the small snack table and made conversation. We dutifully drank our juice and ate salty pretzels.

All of a sudden, Dan’s face turned grey. His breathing got shallow, and his eyes weren’t focusing.

“Are you ok?” I asked, stunned.

“I’m…having…trouble…breathing,” he managed to get out.

I jumped up, still woozy from having just given blood, and hobbled over to the kind woman. I choked out, “My husband…”

She called out to her coworkers, and a swarm of people descended on him, putting ice packs on his neck and keeping his head down.

“This can’t be happening,” I thought, as I stood back from the crowd. My mind flashed to Emmy’s surgery. “This can’t be happening.”

The kind woman who took my blood looked over at my panicked face and said, “He’s going to be just fine.”

I didn’t believe her.

They put Dan on a stretcher with his feet in the air as I nervously looked on. It took him a solid fifteen minutes to regain his color. Finally, he climbed off the stretcher and came to sit back down with me.

“That was really scary,” I said.

“I don’t know what happened,” he replied.

Dan is a strong guy, which is why he is my rock. To see my rock go down left me feeling completely helpless.

We’ve had a stressful week trying to get our ducks in a row before surgery, and I think the weight of it all has taken its toll. As nervous as I am for surgery, I just want to get it over with so we can finally exhale.

Meant to Be

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MeanttoBe

It’s Williams Syndrome Awareness Month, so yesterday we met up with a bunch of other families for a beautiful walk to raise money and awareness.

We were at the same walk last year, which made me realize how much Emmy has grown. Last year, she was a baby, so we pushed her along in a stroller while she snoozed. I remember looking around at the other children who had Williams syndrome and just taking it all in–trying to figure out what my little girl would be like. I had read all the literature, but I still didn’t know what to expect. I still didn’t fully understand what the diagnosis meant for Emmy and for our family.

My experience has been that I can read all I want but, until I’ve lived it, I don’t truly comprehend it.

This year, Emmy wasn’t snoozing. She was dancing and laughing and eating burgers and tackling her sister and giving hugs and trying to make friends. She’s just so much fun to be around.

By all accounts, Williams syndrome is a completely random genetic occurrence. It could happen to anyone. I think the word “genetic” can be misleading because it sounds like we had Williams syndrome in the family prior to having Emmy. On the contrary, I’d never even heard of Williams syndrome! It was a total shock to everyone.

But spending time with Emmy over the past 1.5 years has made me wonder…

Was this really random?

I can’t help but think that this was meant to be…

She has taught me so much about myself and others. I’ve learned that I’m much stronger and more capable than I ever thought. I’ve learned that other people, whose brains are wired differently than mine, see the world in a special way. And, best of all, I’ve learned much more about what these words mean: love, acceptance, and authenticity.

And one more thing…

Before Dan and I had kids, we talked about what we wanted for their future. Because we’ve both been painfully shy in the past and had to work hard to push through that, we had only 1 wish: That our kids would have social personalities.

When we found out that Emmy had Williams syndrome, we immediately looked it up online. And here’s what we saw:

People with Williams syndrome have “highly social personalities.”

Gives me chills every time I think about it.

Yes, it was meant to be.

Going to the Chapel

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Goingtothechapel

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.

Salt Water

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Saltwater

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

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Imightthrowup

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

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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.”

From the Heart

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Fromtheheart1

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.

Fromtheheart2

This is How I Feel

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ThisishowIfeel1

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:

ThisishowIfeel2