Tag Archives: Congenital Heart Defect

A New Twist

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So here’s a fun, new, little twist. We found out that Emmy has Celiac disease!

She’s always been petite, which we attributed to Williams syndrome. But she’s also fatigued most of the time, which we also thought was related to Williams syndrome (and the low muscle tone that comes with it). Stomach problems were only an occasional thing, so Celiac disease never crossed our minds.

I brought her to a new doctor to discuss Emmy’s growth, and she asked if we have any allergies in the family. I have a sensitivity to gluten and dairy, but other than that, no formal allergies. The doctor said, “Well, since we’re getting her blood taken, let’s check her for Celiac disease because of your gluten sensitivity.”

During that time period, our attention immediately focused to Emmy’s heart because a few doctors heard a heart murmur (which hasn’t been heard since before her heart surgery in 2013), and there was a scramble to get an appointment with our cardiologist. I was totally focused on her heart, which is ok — thank goodness, and I put the discussion about Emmy’s growth temporarily out of my mind.

On the same day the echocardiogram of her heart came back ok, we got a call from the first  doctor to say that Emmy has Celiac disease, and her numbers are off the charts! (They don’t even need to do an endoscopy to confirm the results because her numbers were so high.) I was shocked but also so incredibly relieved about her heart that I thought, Hey, we can handle Celiac disease. No big deal. Especially because I’ve been gluten-free for a while, so I already had some familiarity with what it means to eliminate gluten.

Then, as the days passed, I realized:

  1. A child going gluten-free is totally different from an adult. I’m ok with salad and nuts. Emmy wants mac-and-cheese and chicken fingers.
  2. Eating out will never be the same. We can no longer just grab something anywhere at anytime.
  3. Birthday parties are going to be a bear for her. When the other kids are having the standard pizza and cake, I’m going to have to find an alternative for her. (Incidentally, am I supposed to show up with my own pizza and cake?? This is going to be a weird situation and has the potential to alienate her from her friends. I’m nervous about this one…)
  4. Classroom parties at school are also a problem. For her St. Patty’s Day party, my husband Dan had to quickly bake some gluten-free cupcakes.
  5. Emmy has a severe level of Celiac disease, so she has to wash her hands after touching something as innocent as Play-Doh (which has gluten apparently!), and we have to read every label to make sure that the food wasn’t processed in a facility that also processes wheat.
  6. My very first blog post, Green Bagel Morning, takes on a whole new meaning. When I wrote that, I never would’ve thought that we’d have to stress about something as simple as green bagels three years later.
  7. Oh and…I’m going to have to learn how to cook. Ughhhhhhhhhh. And BAKE. UGHHHHHHHHHHHHHHHHHHH.

About that last one… I’m an ok cook, but it doesn’t come easily to me AT ALL. If you want to see me pull my hair out, give me a recipe. It’s all so overwhelming. I actually go into panic mode. I will read a recipe ten times and still not know what I’m supposed to do. All the words start to blend together, and I begin to have a mini panic attack.

If you don’t believe me, consider this. The other day, I asked Dan if we have a Cuisinart. He started laughing and said, “Of course we do! We got that for our wedding!” Then I asked him to show me where it is. And because it all became so daunting (with the blades and everything — yikes!!), I asked him to just take out the Cuisinart and leave it on the counter. It’s been sitting on the counter mocking me for about a week. I haven’t touched it…

But I can throw together an ok meal (usually sans recipe because I just go for the trusty olive oil and seasonings). However, baking is a JOKE. Here’s a secret: I have not baked anything from scratch ever. EVER. EVER. EVER.

Well, that’s not entirely true. I did try once. When we were trying to sell our house, I was thinking of ways to make it smell nice for a showing, and somehow I came to the conclusion that baking brownies was the answer! Because recipes make me panic, I just casually glanced at a recipe and then threw the following in a pan: eggs, butter, cocoa, baking powder, and something else (maybe milk?). I stirred it all together and baked it! Ok, I have to say that it smelled AMAZING. It actually smelled like brownies, and even our realtor commented that the house smelled great. I thought, This baking thing isn’t so hard after all!

But when Dan came home, he made the mistake of taking a bite. I think he’s still recovering…

That was the last time I attempted to bake anything.

The picture at the top of this post was taken when I discovered a gluten-free bake shop! It’s an hour away, but I’m willing to drive. The kids loved it!

So here we go on our new journey. Hang on tight! 🙂

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.

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!

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 Secret I Didn’t Know I Was Keeping

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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.

The Scar

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TheScar

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.

As Long As It’s Healthy

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AsLongAsItsHealthy

I was at the salon the other day, making casual conversation with the hair stylist. She was asking how many kids I have and if I want another. I don’t normally venture into the Emmy story unless I know someone pretty well so I said, in a general way, “I have two kids, and I’d love to have another.”

She responded, “Do you want a boy or a girl? Though, I guess it doesn’t matter, right? As long as it’s healthy.”

That phrase stopped me in my tracks. She kept asking more questions, but I was still on the “as long as it’s healthy” statement, turning it over and over in my mind.

I used to think the same thing. When I was pregnant with both of my girls, I prayed every single night for a healthy baby. That was, in fact, my only wish. I was terrified of having a baby that wasn’t healthy.

And then, five weeks after giving birth to Emmy, we found out that she has Williams syndrome. (They don’t test for Williams syndrome during general pregnancy screenings because it is so rare.) In my mind, my worst nightmare had come true. I wondered what I had done in life to deserve such a thing. I had been a good person, right? It felt like a punishment. I racked my brain trying to figure out what I had done in my past to bring this diagnosis upon my entire family.

Those feelings were so real back then–so painful. And today, I can’t even put myself into that same mindset if I tried. I love this kid so much, and she has brought such incredible joy to my life. The way she crinkles her nose, and gulps down her milk (“glug glug glug”), and reaches for her favorite book, and gets her red shoes when she wants to go outside, and drops her toys into an empty bathtub for us to find later, and giddily throws balls to our dog, and says “Charlotte.” Even though I didn’t realize it at the time, this was the baby that I prayed for.

Really, I can’t imagine that any pregnant woman wishes for an unhealthy baby. So it seems like a natural prayer. Who wouldn’t want a healthy baby?

But let’s look at the other side of that coin. What happens if the baby is unhealthy? Then what? Do we send it back? Do we ask for another? The “as long as it’s healthy” statement doesn’t allow for the other side of that coin.

Because what if it isn’t healthy?

Perhaps, instead of praying for a healthy baby, I should’ve asked “Please give me an open heart to love my child fully, no matter who he/she is” or “Please give me the ability to see how my child fits in perfectly with our family.”

Yes, I’d like to have another baby. At this point, I’m actually much more worried about carrying the baby than I am about who the baby will be.

I, too, was born with a birth defect but, surprisingly, I didn’t find out until I was thirty years old and pregnant for the first time. An ultrasound revealed that I have a bicornuate uterus, which means it’s heart shaped. It sounds lovely, but it can be very problematic. I also have a secondary issue with my uterus which resulted from my first c-section.

So my mind hasn’t even gone down the “I hope it’s healthy” road yet. I’m still wondering if my own body will be able to hold strong.

But if I were to get pregnant again, I hope I won’t obsess about the health of my baby for nine months, as I’ve done twice before.

I’ve learned that health isn’t everything. It’s the whole picture that matters more.

Our Emmy turns two years old tomorrow! I can’t wait to see her opening the mountain of Elmo presents.

I spoiled her this year. She deserves it.

Teresa B

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Teresa

Photo credit: The Bartlinski’s blog, Our Place Called Home

I can’t stop thinking about this little girl.

Teresa B just went in to the Operating Room at the Children’s Hospital of Pennsylvania for another heart surgery. She had surgery a few days ago but then went into cardiac arrest for 30 minutes. She’s been on ECMO, which is the same life support machine Emmy was on, ever since.

I’ve been following her story for the past week, when someone from our Williams syndrome community posted it on Facebook.

Teresa’s story is different from ours, but it brings me right back to that hospital room. It’s as if I’m sitting in front of the life support machine all over again, praying for Emmy to come back to us.

There are days when I practically forget that Emmy was on life support a few weeks ago. And there are days when I am right back there — watching the blood pump through the tubes coming out of her chest.

Here is Teresa’s story. Please pray for this sweet little girl as she undergoes surgery right now.

(This blog has music, so you may want to mute.)

http://ourplacecalledhome.blogspot.com