Anticipation

IMG_3445

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’!

Race pic 2

 

Six Years Old

IMG_6051

Emmy is six years old! She was only one year old when I started this blog. Hard to believe!

Emmy is feisty, fearless, and persistent. Those qualities have remained since she was born. She actually broke her arm at the end of the last school year because she was climbing up a structure on the playground during recess and fell at the very top. (I almost passed out when the school called me. But so far, it looks like she’s healing beautifully.) After her arm was out of the sling, we walked by the school playground and she casually asked if she could climb that structure again.

“That one??” I asked. “You fell from that one!”

She smiled and started climbing. No fear whatsoever.

When we were trying to plan her activities for this year, she asked if she could take karate classes. I wasn’t sure about karate… Let’s just say that it’s not really my speed. And a friend said that it really tests your balance, so I was concerned that Emmy would have an especially tough time.

When we showed up early for our trial class, we got a chance to see the older kids sparring. Emmy sat on my lap while we watched the kids really going at each other. My eyes nearly bugged out of my head. I was going to sign up my little darling for this? I figured that after watching the sparring session, she wouldn’t want to do it anymore. Clearly I do not know my daughter!

“Are you sure you want to do this?” I asked nervously.

“Yes. I love it,” she replied, smiling.

So now Emmy takes two karate classes a week. She was right. She loves it.

It’s interesting to see the activities that really capture her interest. She’s tried dance, gymnastics, piano, t-ball, yoga, and soccer. And while she enjoys them, she will drop everything for karate and swimming.

She also loves arts and crafts, but I fear that this interest is really about being destructive. One thing we still struggle with it that Emmy likes to tear things about. I know that this can be common for kids with Williams syndrome. But for a neat person like me, there are some growing pains associated with this one.

For example, Emmy loves to use scissors. And I trusted her with scissors because she does a solid job cutting paper and has never cut her skin. But one day I popped my head into the study to see that she found a bunch of her nice bracelets in a jewelry box and cut them up. Ughhhhh.

Or she’ll take a bottle of glue and, at first, she’ll be purposeful about where she puts it. And then, it’s all over…

Or, we were watching Charlotte’s soccer game the other day, and I gave Emmy a piece of paper and pencil to keep her busy on the sidelines. The paper had interesting designs on it that you could trace. She turned it over to the back and started poking holes in it.

I can tell that she gets a thrill out of being destructive.

But I’m being nit picky here. Most of the time, Emmy is a pleasure. Her personality is awesome. She’s usually in a good mood and smiley. When she does get upset, there is always a legitimate reason behind it. I don’t think she’s ever thrown a tantrum “just because.”

Emmy still loves Halloween. She talks about Halloween from January through December. She’s actually brought a new joy of Halloween to everyone in the family. I wasn’t majorly into Halloween when I was younger. I liked the candy, but that was about it. I was much more of a Christmas kid.

But now, Halloween is such a happening in our house. We have a store nearby called Spirit Halloween with zombies and werewolves that pop out when you walk in. When we went on our first Spirit Halloween visit this fall, it was practically a sacred event. I even took a video of us walking through the hallowed doors and getting scared by the fake spiders that jump out. I think Charlotte and Theo also appreciate Halloween even more because of Emmy. When we drive by houses with Halloween decorations, everyone in the car gets especially excited to point them out to her.

While Emmy’s personality is lovely and she’s a joy to be around, my heart still hurts as I watch her struggle in different areas. She’s repeating Kindergarten this year. She actually entered Kindergarten on the younger side, at five years old. And she immediately stood out in every class picture because she is so tiny. She loved school last year and never complained, but it was tough for her. Once school started, everyone was off to the races. And while other kids progressed quickly onto writing sentences, we were still practicing how to write Emmy’s name. Thankfully, this year, she’s holding her own quite nicely. School only started a few weeks ago, but she’s with the pack much more than last year. I’ve already seen significant gains in her progress.

Emmy has a new phrase: “A little help.” The first time I heard her say it was when she was riding her bicycle with training wheels and got stuck on a dip in the pavement. She continued to push the pedals around and around, but they just kept grinding. She is a persistent kid, so she tried desperately to get herself out of the rut. Finally, she looked my way, flashed her adorable smile, and asked, “A little help?” I’ve heard her say it a few times now. It’s very gentle; very sweet.

The truth about Emmy is that she doesn’t WANT help. She wants to do everything herself. But sometimes, she NEEDS a little help. I think this is a misperception about people with special needs. I’ve heard it said that people with special needs expect things to be handed to them — or that they needlessly demand help with every little thing. I’ve found it’s just the opposite. Emmy doesn’t WANT the help. She would love to be able to do everything herself. But sometimes, she NEEDS a little support to make it over the finish line.

When she does struggle, it’s hard to watch. Every morning, as she reaches for the banister to walk down the stairs, her hand shakes slightly with an intention tremor. I think her brain is still getting in sync with her nervous system early in the morning because it’s most obvious at that time and then subsides as the day goes along. Other people would probably not even notice the shaking. It’s so slight. But I feel it in my heart. It’s that tiny, little shake that is the give away. Things are harder for her, even though she never complains.

Emmy just adores her brother, Theo. If she could smother him with kisses all day, she would. He mostly runs away from her smothering, but they have a ton of fun together. They’re little buddies.

And Emmy looks up to Charlotte, who has very much adopted the big sister role for her younger siblings. Charlotte is a caretaker, but I’m conscious of the fact that I don’t want to put too much pressure on her. We had a disagreement over the summer where I asked her to watch Emmy at camp, and she pulled the reigns too tightly around Emmy’s fun. So we had to talk about what it means to “keep an eye on your sister” versus chasing Emmy around and telling her to not participate in activities because she might get hurt. But Charlotte has always been mature and, at eight years old, she was able to embrace that concept a bit better once we talked about it.

As time moves along, we all find our roles. It’s interesting to see them sway and shift as school, activities, and friends circle around our lives.

My goal this year is to move towards Minimalism. You know these guys?: The Minimalists

I’m very, very good at acquiring STUFF. It’s somewhat of a speciality. So I’m dipping my toe in the pond of minimalism, starting with The Minimalists and everyone’s favorite declutterer, Peter Walsh. As I look over all of my STUFF, I realize that this needs to be a major overhaul. Wish me luck. ūüôā

IMG_6445

IMG_7104

School

img_0811-copy-2

School is hard. We’re about halfway through the year in Kindergarten, and it’s tough. I knew it was going to be difficult. I heard many of the older kids at past Williams Syndrome Conventions saying they hated school. That always broke my heart because of the way in which they said it. Sure, everyone “hates” school. Every kid would much prefer to stay home and watch tv all day. But these kids hated it because of how hard it was for them — and sometimes because of how their teachers reacted to them. They didn’t necessarily want to sit home and watch tv all day. They just wanted to be able to do their schoolwork without a major struggle.

When you perceive things differently because of your genetic makeup, schoolwork is a struggle.

We have a couple challenges on our plate right now. The first is the visuo-spatial difficulties that we’d always heard about regarding Williams syndrome. This blog, written by a Williams syndrome mom and Science teacher, explains it nicely: http://understandingwilliamssyndrome.blogspot.com/2012/04/visuo-spatial-difficulties-and-how-they.html

We’ve seen Emmy struggle in the past with visuo-spatial relationships. But now that she has to put pencil to paper every day, I see how difficult it is for her to even write her name. Imagine if you practiced writing your name every day for a year, and it was still difficult for you. Imagine if you were asked to write “E,” “M,” “M,” “Y” on a lined sheet of paper, and no matter how hard you tried, you couldn’t write those darn letters on those lines. For an “E,” you have to first start with a straight line down, and that is often a wobbly line, but it’s getting better. Now, you have to do those three little lines to finish your “E,” and it’s absolute torture. You can’t get the small lines to follow the lines of the paper. In Kindergarten, those are called the sky line, the plane line, and the grass line. You have to draw your three little lines exactly ON the sky line, plane line, and grass line. Yours are often above or below, and you spend a long time trying to fix that. Now that’s just the “E.” That takes a good five minutes to work through, and it still isn’t properly lined up. On to the “M” and so forth…

Now imagine that this skill comes easily to all the other kids, and they’re flying through name writing and onto sentence writing and onto story writing…and you’re still back trying to get that darn “E” on the page.

So our second challenge is the pace of the work. The other kids are easily off to the races but, because of Emmy’s challenges it takes us a long time to do the tasks that take other kids two¬†minutes. So homework usually takes over an hour and a half, and that’s after a full school day.

At the last Williams Syndrome Convention, we had an awesome keynote speaker named Paul Daugherty. He is the father of a young woman with Down syndrome, and he wrote a fantastic memoir called An Uncomplicated Life. I both laughed and¬†cried through the whole book. My favorite chapter is called “Homework.” It’s the most simple¬†chapter title, and¬†it sounds like it would be the most boring read. It is unbelievably beautiful. He writes about the homework struggle, and how it affected both him and his daughter, Jillian. Their relationship could be mirrored by homework. He would go bonkers with frustration at 11:00 pm at night when they were still working on spelling the same one word that they had been working on for hours. And she would keep her positive spirit and persist, even though it was tough for her.

I read that chapter over the summer before Emmy started Kindergarten. In a way, I am living it now. I’m not going bonkers at 11:00 pm, thank goodness! Hopefully that won’t start until the high school years. But I am aware of the fact that we drill the same sight words every night, and even though Emmy seems to know the word “the” on Monday, she won’t know it on Tuesday.

But like Jillian, Emmy’s positive persistence is a beautiful thing. She sits down at the kitchen table every day with me and does her homework with no complaints. None. She ¬†just¬†smiles her way through it even though it’s so freaking hard for her. I see her fingers struggling to write those lines. I see¬†her steadfast concentration when she stares at the sight words. And I know that none of this is easy.

It’s amazing that Emmy is willing to try and that she’s persistent. If this were me, struggling¬†to write¬†my name on the lines after a year of trying, I might have broken my pencil in half and said, “You know what? SCREW THIS!”

Not Emmy. She smiles and often cheers herself on. When she claims a tiny accomplishment, she’ll say, “I did it!” And if I try to gently feed her a sight word, she’ll say, “I can do it myself.” If¬†she gets a sight word right, she shrieks for joy and hugs me tightly around my neck.

We have other challenges too. Math is a doozy… Yikes. Math makes me want to pull the covers over my head and go back to bed. I have my own issues with math, so I’m having a hard time teaching math to someone who also struggles with number sense — but in different ways. Emmy doesn’t see what I see when I place counting bears on a table. I can figure out how to help her with writing and reading, but I still don’t have my math strategy down. I have to ponder that one.

But we do have some major accomplishments too! Emmy is reading! She’s really impressed me with her reading skills, and I’m seeing a lot of nice gains in that area.

And even though I’ve highlighted some challenges, Emmy has progressed tremendously since the beginning of the year. She is making huge, huge strides, albeit at a slower pace than the other kids in the class. But the progress is very much there.

So the last challenge falls on me, her mom. I have to keep my patience and a positive attitude. I am actually a pretty patient person, which is helpful. I try not to lose my cool too often. But positivity isn’t necessarily my strong suit. I can get discouraged. I can see the huge mountain ahead instead of the little, AWESOME gains we’ve already made. I can get into a spin cycle in my head about what my dreams and goals are for Emmy and whether we’re on track.

I really don’t want her to hate school. I’m wondering if there are any older kids with Williams syndrome who like school?? I’m hoping so? I’m trying my hardest not to put too much pressure on Emmy so that it makes her hate school, while also balancing the need for her to still do the work and make progress. That’s a tricky balancing¬†act. I’m working on it!

Ok, now for some other updates. Thank you for all your support during Theo’s hospital stay a while back. I think we have FINALLY figured out what is going on with him. He has enlarged adenoids and tonsils. He also possibly has asthma, though he’s too young for that diagnosis yet. For now, he’s on medicine that shrinks his adenoids, and he has been doing MUCH better. He has much less drooling and much less mucus in his throat. He’s like a different kid. But he’s a boy, so he still runs around like a maniac. ūüôā

And Charlotte is doing great. She loves school, sports, dance, and especially art. She’s a sweet kid and a very helpful big sister.

So here we are! (Well, except for me because I’m always behind the camera.) Happy January!

img_5228

Doing All Of The Things

img_7310

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.

Here We Go

IMG_3346

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

IMG_1728

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. ūüôā

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

IMG_0600

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.

IMG_0580

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.

IMG_0202

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? ūüôā

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. ūüôā

IMG_1274