Tag Archives: Fear

Anticipation

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Thank you so much to the many people who reached out to me after my last post, in which I shared that I had breast cancer. I’m sorry for not replying to everyone. There are emails sitting in my Inbox, which I have been meaning to reply to for months. I’ve really had an aversion to this whole cancer thing. I just don’t even want to THINK about it.

Of course, today is the start of Breast Cancer Awareness Month, so I will definitely be thinking about it. But there are just so many emotions that come up. Mostly, I feel grateful that I’m still here. I also feel sadness because the last year was REALLY difficult, and my body was altered in so many ways. I’m still dealing with the side effects from surgery, chemo, and a drug that I will be taking every morning for the next 10 years. I have a swollen arm (possible lymphedema), aching joints, and pain in my feet. My skin has had a horrible reaction to everything too. I thought my acne years were behind me! But then I feel guilty for complaining because at least I’m here on planet earth, and that’s all I wanted in the first place. My emotions surrounding cancer are complicated, and only more writing will help tease them out.

But, for now, I will tell you about our next adventure. Emmy is having kidney surgery next Monday, October 7! GAHHHHH!!! I was telling my husband, Dan, that our life is TRULY a soap opera. We’ve had more “adventures” than we’d care to mention.

Long story short: We did an MRI to check Emmy’s kidneys and discovered that one of them is barely working anymore. From what I understand, our kidneys are supposed to be working at 50/50. Emmy’s kidneys are at 83/17. We have no idea what happened or when it happened, but there APPEARS to be an obstruction. She had an ultrasound done in 2013 which revealed 2 perfectly healthy kidneys.

That was right before her heart surgery…after which she had 2 cardiac arrests and was on a life support machine for a week. Could that have caused the obstruction? No one knows…

The surgeon would like to try and repair the obstruction, which should keep her kidney working at 17%. Unfortunately, the kidney will not restore itself, but we’re trying to preserve the little function that she still has.

Emmy has not had any symptoms and is not in any pain. Her good kidney is picking up all of the slack, so her blood work has always been spot on.

You may know that anesthesia is a huge concern for people with Williams syndrome. (You definitely know this if you’re a parent of a child with Williams syndrome because every time your child has to go for anesthesia, it’s a BIG DEAL.) So while I don’t like surgeries anyway (and, boy, have we had our fair share as a family!!), it’s even more nerve-wracking when the person on the operating table has Williams syndrome.

So now we sit in anticipation of next week.

Speaking of anticipation, this surgery was actually scheduled for September 9th. So we already went through a whole rollercoaster of emotions on September 8th as we drove 2 hours to the hotel where we were due to spend the night. We got a call when we were literally a block away from the hotel. The surgeon had an emergency HIMSELF and was in the hospital. Surgery canceled. When I got off the phone and told Emmy the news, she responded, “Oh, I’m so embarrassed! I did all of that crying for nothing!”

We drove back home in shock, though I also felt a huge sense of relief. We got a call a couple days later saying the surgeon is ok now and that surgery would be rescheduled for October 7.

October is Emmy’s favorite month because it has her favorite holiday — HALLOWEEN!! This kid loves Halloween like no one else I’ve known. She thinks about Halloween 365 days a year. We don’t really know how quickly Emmy will be running around after this surgery, but I am HOPING and PRAYING that she will be able to enjoy trick-or-treating as much as she always does.

I’m also hoping and praying that I keep mentally sane on the day of her surgery. Sitting in the waiting room with a bundle of nerves is something I have done many times now, and it’s very, very challenging. Until then…anticipation…

Here’s a picture of the 5 of us at a Breast Cancer Walk/Run earlier this year. Through it all, we keep on truckin’!

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Doing All Of The Things

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Our babysitter was telling me about how she was excited to see a friend that she hadn’t seen in a while. The friend said, “Can we do all of the things?” And our babysitter replied, “Yes, we will most definitely do all of the things!”

Every time I think of this expression, it makes me laugh. I guess it’s a new expression that means “doing everything we love to do”?? I guess??

Sometimes I’m tempted to use it in conversation, but then I think people would accuse me of trying to be younger than my years…

But I do think of this in terms of Emmy. I want her to do all of the things.

I want her to play sports, go to dance class, take an art class, participate in the various clubs at school…

She doesn’t have to do anything she doesn’t WANT to do. But I want her to have the opportunities that any typical child has.

Some experiences have been easier than others. We have a gymnastics studio near us, and the teachers have been awesome with Emmy. She takes classes with her peers, but the teachers will modify a little bit for her. One student might walk across the balance beam on her own, while Emmy will get a little support from the teacher. One student might do a cartwheel flawlessly on her own, while the teacher might hold Emmy while she practices her cartwheel. But she does everything that everyone else does, and the teachers have been very happy to accomodate for Emmy’s needs. I didn’t even have to ask them. They just did it.

On the other hand, we have had a doozy of a time with dance. I enrolled Emmy in ballet classes at a very strict studio. It wouldn’t have been my preference, but Charlotte really liked the studio at first, and she wanted to go there. I’m a big proponent of having Emmy try everything that Charlotte does. So I signed Emmy up for the class, but I also told them that she has Williams syndrome because I knew that the standards of the studio are more strict than others. For example, a student would have to pass a “dance test” before moving to the next level.

The receptionist gave me the side-eye and said, “We can put her in our youngest class…We’ll start her there…That’s as young as we go…”

This was one of those situations that made me very uncomfortable. I could feel the judgment. I knew that the kids would be younger than Emmy. But I also felt that this person wasn’t keen to have her in the dance school — period — and this was a way to get her in. After all, the aim of this school is to build up dancers in a very strict, professional atmosphere. If Emmy couldn’t perform the steps, how would the teacher react?

But, on the other hand, Charlotte took a practice class, and the teacher was great. I really wavered back and forth on this, but I signed Emmy up nonetheless and put her in the youngest class.

The interaction with the receptionist made me feel “less than.” It made me feel as though I had to apologize for intruding on the professional atmosphere of the school. It made me feel as though I had to make excuses for my child who was born as she was — through no fault of her own.

I should have known *at that moment* that this wasn’t the right place for us. But, you see, I want Emmy to do all of the things! I want her to wear her little ballet outfit with her hair up in a bun. Mostly, I want her to have the exact same opportunities that Charlotte does. If Charlotte is accepted into the class as a typical child, I want Emmy to be accepted as well.

Here’s the irony. The class ended up being a disaster but not for the reason I imagined. It wasn’t because Emmy couldn’t keep up with the steps. In fact, because the kids were younger than Emmy, they were totally out of control! They didn’t follow directions. They cried during the whole class and ran out of the room constantly. I don’t blame them one bit. They were quite young! But that wasn’t the class for Emmy. Just because Emmy has some challenges doesn’t mean that she should immediately be placed with younger children. It was really illuminating! Emmy surpassed these kids in maturity. I asked the teacher to move Emmy to the next level, and she declined. She said Emmy was placed correctly. I kindly disagreed.

This is a dance school that many people praise, but we ended up leaving. It just wasn’t a good fit.

That interaction soured me to dance for a while, but it was something that continued to eat away at me because Emmy loves to dance. I didn’t want to deny her the experience of a dance class just because of this one situation.

After a few months, I decided that we should try a free practice class at another dance studio near here. It’s a very popular studio, but I’ve heard that it isn’t as strict as the first.

Everyone seemed very nice — the owner, the receptionist…we were off to a good start! This time, I didn’t tell them that Emmy has Williams syndrome. I didn’t want them to put her in the younger class again. I couldn’t risk another experience like the previous one.

This class was for five to seven year olds, so both Emmy (at age 5) and Charlotte (at age 7) would be in the same class. It’s an “acro” class, so it’s like “acrobatic dance.” Charlotte would look out for her sister. This seemed like a good set-up.

I dropped the girls off in the class and was lead to an area where I could watch them. As the minutes passed, I almost cried. I couldn’t hear what they were saying, but I could see how the teachers were treating Emmy. When she couldn’t get into a straddle perfectly, they stood over her and admonished her. When Emmy did a bridge (which is really hard for someone with Williams syndrome!! Really, really hard!!), I could tell that they weren’t impressed. They weren’t kind. I walked back in the class, picked up Emmy, and carried her out of the room. The teachers saw me and completely ignored me. Charlotte came running over and said, “This isn’t going well.” I asked her if she wanted to leave, but she said she would finish out the class. I watched the rest of the class while holding Emmy in my arms. I was fuming.

After it was over, the teachers walked out of the room and looked at me with disgust. They didn’t say anything to me and just marched by.

“What happened in there??” I asked Charlotte.

She was rattled. “Mom, they were so mean to Emmy. She did that bridge, and it was AMAZING! Emmy said, ‘Am I doing a good job, teacher?’ and the teacher said, ‘No.’ Can you believe that? I WAS SO PROUD OF HER!”

She continued. “I could hear the teachers talking about Emmy. They said, ‘What’s wrong with her?’ And ‘I thought she was supposed to be five years old?'”

Charlotte was very upset. My seven year old knew this wasn’t right.

I was appalled by the way they treated Emmy, and of course we didn’t go back. Friends told me to contact the owner and express my disapproval. I haven’t done that. In the past few weeks, I’ve heard similar things about this studio, so it makes me feel as if this is the atmosphere, and I don’t know that things will change if I speak up. But maybe they will. I don’t know. The whole experience really upset me, and I kind of just want to move past it.

But I want Emmy to do all of the things! Just because other people don’t know what class she fits in or don’t understand her challenges doesn’t mean that she shouldn’t have the opportunity to do all of the things, right? The Americans with Disabilities Act is something with which I have become very familiar. It protects my daughter. She should be able to experience everything that everyone else does. However, the Americans with Disabilities Act doesn’t change people’s reaction to her. While she may be able to DO all of the things, she may not be viewed in the same light  — or with the same promise — as the other students. That part is rough.

You know what? Third time’s a charm.

A mom told me about yet ANOTHER dance studio that just opened. The owner, she said, is fabulous — very kind and understanding. I pushed my misgivings aside and only saw hope. I emailed the owner and explained our situation. I told her about Williams syndrome, and I also told her briefly about our past two experiences. I told her that I don’t want Emmy to be automatically put with the younger kids, but I also don’t want her to be admonished for not doing the steps properly when she ALWAYS, ALWAYS tries her best. I asked if we could figure out a class that might be right for Emmy.

She called me right away. She told me that my email broke her heart and that she would absolutely find the right class for her. She did, and Emmy loves it. It’s another “acro” class. She is with her typical peers that are her age, and the teacher helps her when necessary. She gets some modifications. When she has trouble with a big cartwheel, she tries a small cartwheel. And her bridge has only gotten stronger and more beautiful. The teacher consistently praises her effort. It is a wonderful experience. They have made us feel welcome and included.

I don’t know why every place isn’t like this. It took us three chances to find a place that would accept us as we are. It’s not that I’m being difficult or that I’m expecting special treatment. I just want Emmy to be able to do all of the things that everyone else does. I think that’s reasonable. In fact, I know it is.

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! 🙂

Here We Go

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I’ve been wanting to post about this for a while, but I’m so stinking depressed about it that it’s hard to find the words. I also have been trying, unsuccessfully, to put it out of my mind and not obsess. (But I’ve been obsessing.)

It looks like Theo will have to go to the hospital for a bronchoscopy on November 10. When Theo was about 5 months old, I noticed a wheezing sound when he breathes. At the time, it was diagnosed as laryngomalacia, which is basically a floppy larynx and no big deal. It happens to some kids and, as they get older, the problem resolves itself. Sure enough, when Theo was about 8 months old, it seemed to go away. I didn’t hear the wheezing anymore, and the doctor confirmed that it had resolved.

Then this past August, when he was 14 months old, he developed a much different sound when he breathes. It’s quite loud, and it sounds like he has mucus in his throat — like a gurgling or purring. At first, we weren’t worried. We figured it was a cold. Then it didn’t go away. And it got louder. We’ve seen several Ear, Nose, and Throat doctors. We treated him for allergies (both seasonal and food), asthma, and reflux. None of those treatments had any impact on the sound. Plus, one of the treatments involved medicine that seemed to make everything worse. He had so much mucus and saliva in his mouth that he couldn’t even swallow.

So here we are. Theo is 16 months old, and the sound is as loud as ever. Furthermore, he has started occasionally choking on his food and, when he coughs, it sounds as though he’s fighting a lot of mucus. (Although this mucus has never come up.) But the Ear, Nose, and Throat doctor confirmed it was there by looking down his throat.

Well, now the ENT has to look further to get to the root of the problem, and the only way he can do that is through a bronchoscopy, which means we have to take Theo to the hospital and put him to sleep with anesthesia. Which reminds me of the last time we put one of our children to sleep with anesthesia, and all hell broke loose. (I can’t even bear to go back and look at the posts right now to link to them. But, in May 2013, Emmy had heart surgery and went into cardiac arrest afterwards.)

I’ve been trying to avoid the bronchoscopy. I’ve been trying so hard to solve this problem without any invasive procedures. But it doesn’t seem like that’s going to happen. My amateurish investigative work isn’t getting us anywhere.

The two prevailing theories right now are that (1) Theo might have scarring in his throat or a narrowing in his airway from when he was intubated in the NICU (2) Theo may have a congenital anomaly called a “vascular ring.” Both are pretty hardcore.

Keep in mind that Theo seems fine. He’s growing nicely. He’s talking and laughing and dancing and having fun. He has all the energy in the world, and he actually doesn’t seem at all bothered by this throat issue. Even when he chokes or coughs, he just keeps going. (The rest of us practically have a heart attack every time…)

So what can I say? It stinks. I’m trying my darndest to be positive. But it stinks. And I’m super bummed that we have to go down this road. I just want everything to be all sunshine and roses all the time, you know?? Especially when it comes to my kids.

Well, our pre-op appointment is on November 3.

So here we go…

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…

Why Words Matter

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I don’t read baby books anymore. With Charlotte, my first born, I read them diligently. I wanted to know when she would be rolling over, standing, and saying her first words. I didn’t really worry about her meeting those milestones, but I wanted to know what was in store for us. When we found out that Emmy has special needs and then when she started missing her milestones, I couldn’t bear to read the books because they served as constant reminders of the things she wasn’t doing yet.

And, often, it wasn’t so much what they were saying as how they were saying it. I would see gentle reminders that some babies just develop later than others, accompanied by words like “Your baby may be normal!” There were reassurances that even if your baby wasn’t meeting milestones, things would most likely be ok. There were broad ranges for milestones and, as long as your baby fell into those ranges, everything would be fine.

But what if your baby didn’t fall into those ranges?

Then I would see words like “Talk to your pediatrician” or “Contact a doctor.”

So everything seemed happy and cheery when your kid was meeting milestones but, if not, you knew that there was bad news lurking around the corner.

There were two camps. The children that were developing “normally” (this word is used all the time) and the children that weren’t. If you were in the first group, the implication was that things were going swimmingly well! But if you fell into the second group, it sounded like things in your life were about to get pretty miserable.

But I have to say that even though Emmy didn’t meet all of her milestones, our life is far from miserable! She is an absolute joy to be around — milestones be damned. No, she didn’t fall into the “normal” (I hate that word) charts, but she has enriched our lives beyond belief. I could gush about her all day but, to sum it up in a word, she’s awesome.

So now I have an almost-10 month old baby, Theo, and I haven’t opened a baby book.

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After years of physical therapy sessions with Emmy, I know a lot about how children develop — more than I ever dreamed I would know. So I have many of the milestones filed away in my mind and, while I don’t obsess over them, I am aware of them. Theo is on schedule, but I still ended up breaking my rule and did a Google search to find out whether standing comes before or after crawling. And that lead me to a page about walking. And here is what I found:

“Most babies take their first steps sometime between 9 and 12 months and are walking well by the time they’re 14 or 15 months old. Don’t worry if your child takes a little longer, though. Some perfectly normal children don’t walk until they’re 16 or 17 months old.” (Baby Center)

“Some perfectly normal children…”

Isn’t it funny that I haven’t looked in a baby book FOREVER — for this reason alone — and then, on my first search about milestones, these are the words I find?

Why are we calling children “perfectly normal”? And for that matter, what about the children who aren’t deemed “perfectly normal”? What about them?

And then, on the next page, the inevitable dismal line:

“Don’t fret if your child is simply taking her time. But if your child doesn’t stand with support at 12 months, can’t walk at 18 months, or isn’t able to walk steadily at the age of 2 years, bring it up with her doctor.” (Baby Center)

Can’t you just hear the threatening music? So now we know that if things don’t happen by a certain timetable, something scary may be lurking around the corner…

Well, what was lurking around our corner was Williams syndrome! And it hasn’t been bad at all! Her beautiful smile is a Williams syndrome smile, and it lights up our lives every day.

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But, beyond all of that, let’s revisit the words “perfectly normal,” and let’s look at them in terms of a child who is typical.

The first word, “perfect,” is a heavy word. We throw it around a lot, but it is heavy. When you strive for perfection, you will always fail — every, single time. Nobody is perfect. Perfectionists always feel like they’re doing something wrong because, until they’re *absolutely perfect*, nothing is ever right. And because they can never achieve the status of *absolutely perfect*, they end up constantly unsatisfied. So a perfectionist, like myself, is often caught in a trap of inevitable failure. Cheerful, huh? 🙂

Perfectionism can be debilitating. It stops you from doing tasks. If I don’t have time to arrange everything on a shelf perfectly, I won’t even put one thing on the shelf. I had to ask my husband to unpack my boxes (we just moved) and put things on the shelves anywhere he wanted because my desire to have things just so was getting in my own way.

I REALLY try not to use the word “perfect” — especially around kids. However, it’s a word that often pops into my mind. If Charlotte carefully writes her name at the top of her paper, it certainly looks perfect to me! But I don’t want to put that on her. So I choose another word. Or if Emmy puts on her socks the right way, it certainly looks perfect to me! But, again, I pick another word.

And after the word, “perfect,” we have another favorite of mine — “normal.” Someone once said that “normal is a setting on the washing machine.”

What’s the opposite of normal? It’s abnormal. Do we really want to call a child abnormal?

I like to use the word “typical.” As in, “typically children develop like this.” But if they don’t, that’s totally ok too. Everyone is different. That’s what makes life interesting.

I feel like there’s a lot of fear around milestones. You’re either developing “perfectly normally,” or all hell is breaking loose. There’s no grey area. I want to share that, in our case, things went as far from “perfectly normal” as you can get. We are all the way at the other end of “perfectly normal.” But I want to let you know that things over here are pretty great too! In fact, they’re magnificent. 🙂

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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.

Change

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A couple months ago, we were driving back from visiting my sister, who lives near a beach. While the kids slept in the backseat, Dan and I talked about how relaxing it felt to be by the water for a few days. For years, we’d been saying that we’d like to move near a beach. But it just seemed so impractical. We had built a life elsewhere. A move would be difficult, especially with three little kids.

Finally, one of us said, “You know what? Let’s just do it.”

But we had said this many times before…and then life happened…and we pushed that dream aside. However, this time seemed different. It felt like we were finally serious. Within a few days of getting home, Dan called a realtor about putting our house on the market, and we started to research houses in a town near the beach.

With the wheels actually in motion, my initial excitement turned into nervousness. I had fears — lots of them! We would have to take the girls out of a school that they love. We would be moving farther away from family. We would have to change doctors and dentists. We would have to leave Emmy’s wonderful music therapist. We would have to work with a new school system to arrange physical, occupational, and speech therapy. Overall, we would be leaving everything that was familiar.

One day, when we were scheduled to meet with our realtor, I broached my fears to Dan. “Is this really a good idea? I feel like I know this area so well. I’m nervous about making such a big change.”

He reassured me that everything would work out. And I realized then that if I always listen to my fearful side, I would never do anything. I would stay put exactly as I am.

I actually had a lot of trepidation about starting this blog a year and a half ago. I knew I wanted my blog to be very personal and honest, so I worried about the reaction that I would get. I worried about “putting my business out there” for everyone to see. And, most importantly, I worried about posting pictures of my children.

I really hemmed and hawed on the pictures issue. Should I just take pictures of the kids from behind? Did I really want to expose their faces? What about the creeps out there? The thing that tipped the scales for me was that Williams syndrome can be a very overwhelming and scary diagnosis. I wanted to show newly diagnosed parents what Emmy looks like — how beautiful and sweet she is. I felt like you might be able to get a more accurate impression of who Emmy is from seeing her face. See how Williams syndrome isn’t as scary as it sounds? 🙂

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So I pushed past all of those fears to start this blog, and I’m happy that I did! I love hearing from people who find my blog. I love showing what Williams syndrome is, and I love writing about how Emmy has changed all of our lives for the better.

I didn’t let fear hold me back with the blog, and I wasn’t going to let it hold me back with the move either.

I emailed a realtor who was familiar with a town that we liked and wrote: “We’d like to move, and we’d like to do it quickly. We have three little kids and the holidays are coming up, so we want to just go for it sooner rather than later. Can you help us?” We lucked out, and she was awesome. Soon, all of the pieces fell into place for both the selling and buying of our old and new houses. With momentum on our side, Dan and I moved at warped speed to move before the holidays.

And we did! We’re in the new house in a brand new town near the beach!

We have floor to ceiling boxes, and we still have a ton of unpacking and rearranging to do. But we’re here!!

I think that our biggest concern this whole time was for Charlotte. We were pulling her out of a Kindergarten that she absolutely loves and transferring her to a bigger school with brand new teachers and friends. My own family moved when I was going into sixth grade, and I have to tell you that I was TRAUMATIZED. The memory of the first day of school still haunts me to this day. I can feel my palms getting sweaty just THINKING about it. Ugh. So we felt terrible about changing Charlotte’s comfortable surroundings.

But on the first day in her new school (this past Monday), a little girl brought in a picture frame that she made over the weekend for Charlotte! I couldn’t believe it. Several other kids brought in cards that said things like: “Charlotte — welcome to our school.” Those kind gestures helped her so very much on what would’ve been a difficult first day. I vowed that when I hear there’s a new kid coming to town, I’m going to encourage my children to make cards for him/her. It was really, really sweet.

So the first full week of school is in the books! Charlotte is starting to make friends and is really enjoying her classes, and Emmy fit in right away. Emmy goes to the preschool program and, if you read about the “Williams syndrome personality,” you’ll see why she’s so friendly and outgoing.

So there we go. Lots of changes! But through all of this, I’ve learned that when I move past fear to take a chance, I will eventually embrace change. 

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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!

Loud and Proud

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The average person wouldn’t know that Emmy has Williams syndrome. First of all, it’s a rare (1 in 10,000) genetic condition that most people haven’t heard of. And, secondly, to the untrained eye, she outwardly looks and acts like any other child. If you’re not an expert on genetics, you probably would have a hard time picking a child with Williams syndrome out of a crowd.

This applies to many other syndromes as well. Since finding out that Emmy has a genetic condition, I’ve met other families who have revealed their own child’s diagnosis. And, just looking at them, I would have had no idea.

So I don’t have to tell anybody.

Nobody needs to know.

It can be a secret between me, my family, and the school system.

These ideas went through my head in the beginning, when we first found out. Especially because a doctor told me that I shouldn’t reveal her diagnosis until I knew someone really well. She told me that people can be confused and, later, cruel. I became terrified that other people would hate us; hate our family — just because we were different. I had an image of everyone gathered at a neighborhood picnic, and our family showing up. In my head, I saw the heads in the crowd turn to look at us and whisper among themselves that we were “that family.”

I saw it because I knew it.

When I was growing up, we had people in my town who were different. And everyone knew who they were. There was the guy who always walked around town because he couldn’t drive — because he has special needs. I always saw him at the park and the coffee shop. I was aware of the fact that he was different. And I wasn’t anywhere near as open-minded and curious as I am now.

When I was growing up, I casually noticed him, but I never spoke to him. I should have said “hello.” I should have been friendly and welcoming. I have learned SO MUCH about other people and their differences since finding out about my own daughter. That has been one of the many gifts she’s given me.

Recently, I drove around my old town, and I saw that very same guy walking down the street. I swear I cried at the wheel. All of a sudden, I became more aware of who he was. I became curious about his story. And I also reflected back on the kindness of others. I thought about the people who had talked to him at the coffee shop and shook his hand at the park. I now believe that there are more loving and caring people in this world than there are cruel people.

I believe that those who love will embrace our family enough to drown out that small faction of cruelty.

So I write this blog and share our story, loud and proud.

The response has been incredible. I don’t feel like “the others.” On the contrary. I’ve been so moved by the number of people who have accepted us — and appreciated us — just as we are. This is my family. This is reality. I can’t change who we are, and I don’t want to.

When I found out about Emmy’s diagnosis, I had some incredible phone conversations with other Williams syndrome moms, which I will never forget. I remember telling one of the moms that I was too scared to reveal Emmy’s syndrome — too afraid that the other moms on the playground would ostracize me.

She replied, “If that happens, you need to silently thank them. They’re showing you who they are — right off the bat, and you wouldn’t have wanted to be friends with them anyway.”

I take that with me. She’s absolutely right. I wouldn’t have wanted to be friends with those people anyway. And the people I have met as a result of sharing Emmy’s diagnosis? They’ve been amazing.