Tag Archives: Heart

The Time That I Freaked Out

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It’s very bizarre to fill out medical paperwork on behalf of Emmy. Since we moved a couple months ago, we’ve entered a new school system, and we’ve had to find new doctors and dentists. We’ve also signed up for extracurricular activities, like gymnastics. This all comes with a lot of paperwork…and a lot of questions.

First, the questions ask for me to go through her health history. Gosh, this is still tough for me. I have trouble rehashing her heart surgery in 2013 followed by 2 cardiac arrests and a week on life support. She also has a lasting problem from that event, which makes me sad to think about. And then, of course, there’s the fact that she has a genetic condition. And, while I’ve completely accepted and embraced the fact that she has Williams syndrome, sometimes just thinking about that first year can bring back memories of complete uncertainty, confusion, stress, and exhaustion. Trying to grasp what Williams syndrome meant for our child along with setting up doctors’ appointments alongside Early Intervention services was just EXHAUSTING.

Next, after filling out her health history, I’ll no doubt see the following question which is phrased in many ways but most commonly: “Is your child healthy?”

I don’t even know how to answer this question. I mean, yes, Emmy has both Williams syndrome and a lasting issue from her cardiac arrests. But she certainly SEEMS healthy. She smiles a lot, runs around all day, expresses her MANY opinions loudly, and pushes herself in everything she does.

I don’t even know how to define “healthy” when it comes to Emmy. On a day to day basis, she seems healthy to me, even after everything we’ve been through.

Then we’ll have moments that will make me positively freak out.

A few days ago, Emmy ate some mango (her favorite food). Then a couple hours later, she said, “Mommy, I need some help.” I looked over, and she was practically green. She then threw up twice.

And I got nervous. I’ll tell you why… When we were in the hospital after her heart surgery, one of the nurses told me that when something is wrong with the heart, it often presents itself in the stomach first. So vomiting could be a sign of a heart problem.

I tried to put that thought out of my mind and deal with Emmy’s situation as if it were just a stomach bug. I did all the usual things that I do with stomach bugs–cleaned her up, gave her some water; tucked her in bed for a bit. But she wouldn’t settle. I brought her downstairs and sat with her on my lap, as she clung to me. She was acting differently. She could barely sit up. She kept saying, “Mommy, I’m scared.”

All this after throwing up only twice??

She seemed to be getting worse quickly. She was practically limp in my arms, and then her eyes rolled back for a second.

And that was it. My mind took off racing. What if it is her heart? That was all I needed. Without another thought, I grabbed my purse and put her in the car. She didn’t even have shoes on! I ran back in to get her shoes and then hopped behind the driver’s seat. I turned around to look at her again. Am I overreacting??

“Emmy, are you ok? Should I take you to the hospital, or do you want to go back inside?”

She said weakly, “I want to go to hospital.”

Done. I frantically drove to the hospital, peeking back to check on her along the way. She looked like she was going to pass out. Her eyes were closing, and her head was hanging down. I tried talking to her, but she would only answer in a slight whisper.

“YOU OK, EMMY?? ARE YOU EXCITED ABOUT YOUR BIRTHDAY COMING UP???” I was trying to get her interested in something–anything!

When we got to the ER, I breathed a huge sigh of relief. At last, we were safe. Someone was going to help us.

I practically ran her inside, and rattled off her health history. Emmy seemed to perk up when she noticed the tvs. And then she perked up even more when they brought her some Batman stickers. And then she REALLY perked up when they brought her an ice pop.

And all of a sudden, the child who completely scared the heck out of me an hour prior was sitting up in the hospital bed, happily watching Monsters Inc., eating her ice pop, and chatting up the hospital staff. She looked great. And then the attention started to turn to mom…

“So, mom, did you call the pediatrician?”

Nooooo.

“You didn’t call the pediatrician?”

Noooooooooooo. Honestly, it didn’t even cross my mind to call the pediatrician. After what we’ve been through medically with Emmy, I didn’t want to waste a precious second. In the past, I’ve seen her situation change in, literally, a heartbeat. She’s gone from “ok” to “clinging to life” in the space of a few seconds. The doctors will remind me that it was different back then. She was post-surgery. That was 2 whole years ago. But after living through that…after witnessing what happened to her…I can’t just forget. When I see her start to fade on me, my mind goes back there in a split second, and I freak out.

I think the staff in the ER thought I was a little bonkers. My child threw up twice, and I brought her to the ER. That’s all it takes, apparently, for Mom to freak out. I was told that she’s a healthy child, and I should treat her just like any other. And if she vomits, I shouldn’t worry about her heart.

So it seems the answer is, yes, she’s healthy.

But, seriously, telling me not to worry is like telling someone else to stop breathing. Worrying is what I DO. And I’m quite good at it! I’ve actually perfected it, thank you very much. 🙂

But here’s the deal… I wouldn’t be able to live with myself if there were something seriously wrong with Emmy and I brushed it off as nothing. When I feel like she’s giving me signs, it’s impossible to ignore them. I’ve witnessed things changing in an instant. I know the circumstances were different, and that was all 2 years ago. I know she was post-surgery. But after living through that, I can’t forget it.

So, yes, we may be back to the ER one day, and Emmy may get a repeat of Monsters Inc. and an ice pop. But next time, I’ll call our pediatrician on the way over…

Starting Over

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One week before Emmy’s first birthday, we were headed to Boston for a “vacation.” A mom asked me why we were vacationing in Boston. Did we have family there? Were we going to take the kids to the Children’s Museum?

I was vague with my response. “Oh you knowww…the usual stuff people do…”

If I had told her the real reason — that we were going to the Williams Syndrome Association‘s National Convention — I would’ve had to tell her that Emmy has Williams syndrome. And I wasn’t prepared to do that.

Very early on in Emmy’s diagnosis, we met with many doctors to find out more about our little girl. One of those doctors advised us not tell people about Williams syndrome right away.

You see, right before Emmy was born, we moved to a new town. So nobody knew us. And the doctor wanted people to get to know Emmy, and our family, first — without the label of “Williams syndrome.”

I took that to heart, and I didn’t tell anybody. Only our immediate families and a few friends knew. As time passed, I used to think, “Gosh this is starting to feel very uncomfortable and secretive.” But so much time had gone by, and I hadn’t said a peep. So it felt strange for me to now say, “Listen, I’ve been meaning to tell you something for the past year…”

It was a cycle that fed upon itself. The deeper I got into the secretive nature of it, the harder it was to say something.

And then, when Emmy was 1.5 years old, and we were a few weeks away from heart surgery, I FINALLY opened up to a neighbor. She was so incredibly sweet about it, and I wondered why I hadn’t just told her all along.

At that point, I kind of began “The Big Reveal” and started telling people left and right. But at this point, it was odd because everyone thought that we were just a regular family going through regular family stuff. And I would say, “Sooo you know us very well by now…but there’s something surprising I have to tell you. Emmy is going to have heart surgery next week” [which was met by complete shock and, sometimes, horror] “and she has something called Williams syndrome, which is very rare, and comes with all sorts of implications” [which was met with more shock followed by kindness].

If I were to do this all over again, I would’ve kept it a secret until I got a better handle on it, and then I would’ve told people. So maybe 2-3 months. After a year and a half, it came across as very shocking. And I think people also wondered why I had been hiding it for so long. When I think back on it, it’s very possible that the doctor meant for me to keep it a secret for 2 months and not a year and a half. But I didn’t think to ask about the exact timeline. I was just trying to process it all myself.

So after “The Big Reveal,” everyone knew. And I actually felt more comfortable with people knowing than not knowing. We needed a lot of support during and after her heart surgery, and people were there for us in droves. I was glad that I shared it publicly (I started blogging a little before then) because we couldn’t have gone through heart surgery without that support.

I was very comfortable with Williams syndrome, very accepting of Emmy, and very open about the diagnosis.

And then we moved.

And I never realized that we would be starting over. We would be back to a point where no one knew. I didn’t even have time to think about all of this before because we moved so quickly. And then once we were here, it hit me. All new people. None of them with any clue about our little family and what we’ve been through.

And now I would have to start telling people again. If I had thought about it before, I probably wouldn’t have imagined that it would be a big deal because I’m so open about Williams syndrome. But, somehow, it ended up being a big deal. Because I’m back in that same picture that the doctor painted early on. I’m new to a town. Nobody knows us. And, yet, we’re carrying a label.

Shouldn’t people get to know Emmy first before I hoist this label on top of her? Shouldn’t people get to know our family before I say, “My daughter has a syndrome that you’ve never heard of…” What would they think?

It’s been so long since I’ve thought about what others think when it comes to Williams syndrome, or how our family will be perceived, or the implications that a label would have on Emmy.

Things have changed because she’s older. She’s 3.5 years old, and she wants to play with other kids. She’s no longer a baby. She’s much more aware of how she’s treated by others and more aware of the reactions she gets. She can read people’s faces now. She can feel how they relate to her and can tell if they’re comfortable around her.

Keep in mind that Emmy doesn’t know what Williams syndrome is. I’ve told her, but she doesn’t understand it yet. Charlotte, my five year old who is typical, doesn’t really understand it either. So it’s a lot to take in. But I think that Emmy can feel that she’s different in some ways. She knows that she takes longer on the stairs when other kids just race down. She knows that she stands in the front of the line because she’s so tiny. I think she knows that there’s something there, and I think she is perceptive about how others relate to her.

So I find myself in the same place but a different circumstance. I’m in a new town where nobody knows about Williams syndrome…but now my child is older. And my mind doesn’t go to, “What will people think? How will they react to our family?” My mind goes straight to, “I just want to protect her.”

My instinct is not to tell. I want to protect Emmy, and I worry about how others will treat her. Not everyone understands what it means to have special needs. Not everyone grew up around someone with a disability. I, myself, had no clue about any of this until she was born.

But, even though my instinct is not to tell, when I finally told people before, life got a little easier. I wasn’t carrying around a secret, and I wasn’t silently censoring myself in every conversation — wondering if I gave too much away.

It might be better for me to tell.

Another Williams syndrome mom said a while ago, “It’s a great way of weeding people out. You can see who you really want to be friends with very quickly.”

So there I was, last Friday, talking to a mom in our new town. A possible new friend. She asked me casually about Emmy’s therapies, which she gets in school. So I replied, “Emmy has something called Williams syndrome.” My explanation of Williams syndrome is still lacking. It comes out in a rush like: “It’s a very rare syndrome that no one has ever heard of and has lots of implications…but she’s doing great!”

I have to work on my explanation. It’s a lot to take in.

But the mom smiled and said, “Oh, ok.”

This is where we are — starting over.

Why I Stopped Apologizing for My Child

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A while back, I was looking to find a daycare that Emmy could attend a couple days a week. Before I started my journey as a mom, I assumed that my kids wouldn’t go to daycare because I had images of constantly-runny noses, unchanged diapers, and bored staff. Woah, was I wrong about that one! I’ve been able to find daycares that are run more like schools, so my kids are learning, having wonderful social interactions, and making cool art projects. They’ve also become very close with their teachers, and I love to see those special bonds forming. So I am pro-daycare, if you can find the right place.

This happened before I found the right place…

Emmy was too young to attend Charlotte’s daycare, which we’ve been very happy with, so I needed to find a place that would take younger children. And I needed to decide when I would drop the words “Williams syndrome.”

Here’s the thing. Not all parents reveal that their child has a diagnosis. They don’t want a label, they’re worried about their child getting into the school, the don’t want their child treated any differently, etc. I empathize with all of these concerns, and I’ve thought about the same things myself.

In my case, though, I knew I had to tell the school about Williams syndrome. First, I knew that our pediatrician would have to fill out a Universal Health Record before Emmy started school, and that it would say “congenital heart defect due to Williams syndrome.” So the cat would be out of the bag at some point. Second, I figured that the teachers would pick up on her delay and ask me about it. I didn’t want to have to fib my way out of that one. Third, my memory is not great. I would never have remembered who I told or who I didn’t. That’s part of the reason I don’t keep her diagnosis a secret from anyone. I would literally have to carry around a notebook and jot down who I told and who I didn’t — and hope that those people never run into each other!

Ok, so I knew I was going to tell. I just didn’t know when or how.

I called the first school and asked if they had room in their program for her age group. The Director said, “Yes. Come on over.”

I hopped in the car and mulled over how I would tell him about Emmy. When I arrived, he offered me a seat in front of his desk. All I could think was: Williams syndrome Williams syndrome Williams syndrome. He told me a little about the program. I nodded and smiled. Williams syndrome Williams syndrome Williams syndrome.

Finally, he stopped talking and asked me about Emmy. He wanted to know if she was either cruising or walking because that would determine her classroom. They had room in both. At this point, Emmy was barely cruising. She was holding onto furniture, but she wasn’t cruising with ease. I knew, though, that if I didn’t talk her up, he would put her in the infant class with the kids who weren’t walking at all. I didn’t think that holding her back, in that sense, was best for her development. She needed to learn from the kids who were already walking. She was also closer developmentally to her own age group than to an infant.

So I took a deep breath and confidently said, “Yes, she’s cruising. She’s been a little slower in that respect because she has Williams syndrome.”

Cat’s out of the bag!

I swear his eyes nearly popped out of his head.

“And what’s that?” he asked.

I told him about Williams syndrome and, in doing so, I realized that I was apologizing for my child. I was emphasizing that she was practically typical and that Williams syndrome was no big deal. Honestly, I felt gross. I was sugar-coating. I wasn’t being real, and I wasn’t being true to my child. When I saw the look of concern on his face, I just kept laying it on thick — how Williams syndrome would be no problem at all. I didn’t dare say that she might need help on the playground or with art projects. I didn’t mention how great it would be if her Early Intervention therapists could come and work with her. I acted as if she would be just fine with no help whatsoever. And then I sat back and waited for his response.

He looked incredibly uncomfortable. He didn’t embrace the situation. Instead, he probably heard nothing I said after the word syndrome. He nervously said, “Ok, let me go check back in with those numbers and make sure that we have room in the cruising class.”

He walked away and came back with a post-it note that had a number on it.

“Turns out we’re at our limit!” he proclaimed. “I thought we had room, but I was wrong. But I’ll certainly give you a call if anything opens up.”

I’m sure he was lying. On the phone, they had room. In person, after my revelation, they were suddenly booked.

I got back in the car, feeling sick, and drove to the next daycare. I debated not revealing her Williams syndrome this time, but I knew I had to for all the reasons I mentioned above.

This time, I toured the school first and then sat down with the Director who said they had one more slot. Great! She couldn’t back out on me now.

I then told her that Emmy has Williams syndrome and, to my horror, I fell back into that sickening apologetic tone. At one point I even said, “You wouldn’t even know there was anything wrong with her.”

UGH. OUCH. I couldn’t believe those words came out of my mouth.

The Director smiled sweetly and replied, “But there isn’t anything wrong with her.”

I felt awful. Here was a stranger who needed to tell me that there wasn’t anything wrong with my child. But talking to her made me feel like I was getting somewhere. I felt as though she understood and was ready to accept Emmy with open arms.

She then asked if Emmy had any medical issues. I said that she has a heart problem due to Williams syndrome but, here we go again, it’s no big deal.

Heart problem?? The air left the room. Her attitude of acceptance turned into a brick wall. This sounded like a liability.

“Welllll,” she started. “You know I’ll have to check with Human Resources about that.”

People have since told me that it’s illegal to not accept someone with a heart condition, but I haven’t done enough research to confirm that. All I know is that, when I called her later to see if she had checked with Human Resources, she said she was mistaken and that they actually didn’t have room for Emmy. The class was full.

So the woman who just told me that there was nothing wrong with my daughter was able to find something wrong. Thanks for the life lesson, lady.

I felt disgusted. I had basically sold my soul to explain away Williams syndrome, and both places rejected me. I felt as if I weren’t giving Emmy the credit she deserves. Instead of proudly embracing what was special about her, I was apologizing for her and explaining her differences away. And they didn’t take her anyway! All of my sugar-coating got me nowhere.

So I decided to speak honestly and openly about Williams syndrome. It is harder for her to do things. But, damn, does she try HARD at everything she does. She perseveres like no one else I’ve seen. And her sweet personality is just such a gift. I’m so proud of this girl.

Just as I resigned myself to not finding a place that would take her, there was a phone call from another school that we had been trying hard to get into. We had been on the waiting list for a while. They were packed but found a spot for Emmy a few days a week. The Director was so welcoming and, when I talked openly about Williams syndrome, I didn’t scare her away in the least. She said that she couldn’t wait to meet Emmy and that they were so happy to have her. I asked if we could have some of her Early Intervention therapists there to help her, and she responded, “Of course!” She didn’t freak out about Emmy’s heart or about her lack of walking. She wanted to put Emmy in with her age group, which I whole-heartedly agreed with. It felt good, finally, to be heard and understood.

Thinking back on my “apologies” for Emmy makes me feel icky to this day. Hey, this diagnosis isn’t her fault! She did absolutely nothing wrong. Through a completely random genetic event, she was made this way. And, boy, do I love everything about her.

So this whole experience, while stomach-churning in parts, gives me the confidence to say:

I am no longer apologizing for the special needs of my very special child. 

Love you, kiddo.

Finding a Home

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I forget that Emmy has a Congenital Heart Defect. I don’t know if other Williams syndrome parents feel this way, but I am very much focused on all of the various aspects of Williams syndrome…the heart defect seems almost secondary.

It SOUNDS ridiculous. Her heart is what’s keeping her going. Her heart is essential for life.

But when we found out she has Williams syndrome, those were the only 2 words I Googled. Not “Congenital Heart Defect.”

It could be that people with Williams syndrome can have a host of medical issues, so I was trying to absorb the laundry list of possible problems instead of focusing on just one.

It could be that I’m not a medical expert, so it’s much easier for me to research and comprehend other aspects of Williams syndrome.

It could be that I STILL have a hard time wrapping my head around the fact that Emmy was born with a serious Congenital Heart Defect, had open-heart surgery this past May, suffered 2 cardiac arrests, and spent a week on life support.

Whatever the reason, I’ve always seen Emmy falling directly into the Williams syndrome camp. And, therefore, the Williams syndrome support groups were initially my home.

But over the past year, I’ve found a home in another support group too — one for parents of children with Congenital Heart Defects.

I’m the only one in the group who has a child with Williams syndrome. But the people I’ve met as part of the group totally GET IT. They have been so loving and supportive and helpful and encouraging. When someone says to you, “I hear you. I understand,” it’s the best thing in the world.

So when we went to a Congenital Heart Defect walk over the weekend, I was so happy to see all of my support group buddies and a team of people from the hospital who came out to walk with us.

And there is one special mom, who I won’t write about in too much detail here — to respect her privacy. But I walked on a team for her sweet son. He was only 1 week older than Emmy.

And, when Emmy went into cardiac arrest earlier this year, this very special mom dropped everything to come to the hospital — even though she had lost her son in that very same hospital, on that very same floor, only 3 weeks prior. You don’t find people like that every day.

So now I’ve found two homes — one in the Williams syndrome community, and the other in the Congenital Heart Defect community.

And it’s become so clear that I NEED support. In the past, I would’ve been way too ashamed to join a support group. I would’ve been too afraid to show weakness. I would’ve shouted from the rooftops that “I can do this all by myself!”

Now I’ve grown wiser. When I’m in a support group, I learn from others who have walked this path before. I lean on others when I can’t stand on my own. And I hope that I give something in return — even if it’s just sharing our story.

I also love to laugh. And support groups can be a Cry Fest. Sometimes.

But, usually? Usually, we’re laughing.

The Scar

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I have to be honest. Before Emmy had heart surgery, I was really worried about the scar. Baby skin is so pure and soft. It symbolizes newness and promise and possibility. Whenever they show diaper commercials on tv, they zoom in on the baby’s chubby, soft, flawless skin.

Babies aren’t hardened adults with tough skin yet. They don’t know about the world and its difficulties. So the idea of cutting into Emmy’s gentle skin just slayed me.

Plus, I’m squeamish. I can faint at the sight of blood or anything resembling an open wound. When I was in middle school, I cut my finger in Woodshop class. I looked down at the blood and fainted, falling backwards and hitting my head on a metal filing cabinet. I was taken to the emergency room for the major gash in the back of my head, not the tiny cut on my finger.

So I was nervous. But I was desperate to be there for Emmy and not let my embarrassing squeamishness get in the way.

When Emmy first came home from the hospital, I was so happy to have her home that I felt like I shouldn’t care about the scar. My head told me to just be thankful that she was alive. But every time I glanced at the scar, I thought I was going to faint. From what I’ve seen of other kids, Emmy’s scar is particularly noticeable. Her surgery was back in May, and the scar still looks reddish pink. (Don’t worry — she doesn’t have an infection.) I think it’s because she was on life support for almost a week, and her chest remained open during that time. It didn’t heal as cleanly and quickly as some other scars I’ve seen.

Also, when she first came home, every time I looked at the scar, it brought back a rush of emotions. It reminded of the tough time she had after heart surgery and the fact that she almost didn’t make it. I felt like I was reliving it again and again and again. Those feelings have subsided a bit with time, although I can still go back to that hospital room in my mind with a word or a smell or the sight of an ID badge that says “Parent Pass.”

Emmy, on the other hand, seems quite comfortable with her scar! She points to it and say “boo boo.” She lifts up her shirt for people to see. One woman remarked that she seems proud of it. I hope she is. She sure earned it.

I want her to be proud of it as she gets older too. When we’re young, scars can be a badge of honor. And later in life, we can get more self-conscious. I have a scar over my eye from when I fell on my lunchbox as a kid. I never thought twice about it until I got older and started to critically examine my face in the mirror. “That needs to be plucked…that doesn’t look good…and, oh jeez, that scar…”

I hope I can continue to foster Emmy’s pride in her scar. A nurse recently said that she doesn’t like the term “congenital heart defect” because it attaches a negative connotation to something that kids should actually be proud of. They don’t have the scar because they’re defective. They have it because they are downright amazing.

I joined a group on Facebook called “Mended Little Hearts” for families of children with Congenital Heart Defects. Every time they post a picture of a little boy or girl and I see that scar peeking out from the top of a shirt, I feel an instant connection with a stranger.

“Emmy has that too,” I think.

The scar didn’t mar her skin like I feared it would. It didn’t take away from her beautiful, soft, gentle baby self. She still is my snuggly sweet little girl, full of promise and possibility. And now she has a badge of courage too.

By This Time Tomorrow

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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.

A Parent’s Heart

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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

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.

Fromtheheart2