Tag Archives: Moments

The Little Things

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TheLittleThings

When Emmy was first diagnosed with Williams syndrome, I talked to other moms who told me that I would appreciate the little things more. But I didn’t really know what that meant. First of all, at the time I was really upset about the diagnosis and didn’t want to appreciate the little things more. I just wanted Emmy to be miraculously cured. Second, I thought I had already been appreciating the little things with my first daughter, Charlotte, so I couldn’t imagine how I could appreciate them any more. And, finally, I didn’t know which little things they were talking about.

Until I experienced them for myself…

The first time my older daughter, Charlotte, put a toy phone to her ear, and said “Hello,” I thought, “Awww that’s cute.” I didn’t gasp in shock or run to get my camera. It’s expected that a typical child would put a phone to her ear. When a typical child plays pretend, the parent doesn’t go bonkers with excitement. It’s just expected.

Likewise, playing with a toy phone is not considered a milestone. Most parents of typical children could tell you exactly when their child took her first step or said her first word. But they probably couldn’t tell you the first time their child played pretend.

And there isn’t a spot for “first time playing pretend” in the baby book. First word, first day of kindergarten, first tooth, first haircut are all in the book with a blank line for date accomplished…nothing about “first time playing pretend.”

With typical kids, milestones like walking and talking are a big deal. But other smaller things seem to just happen. There’s not a ton of effort put forth by parents and therapists and doctors and other cheerleaders. Things just happen.

Many things with Emmy have been slow to arrive. It wasn’t like I blinked, and suddenly she was using crayons to draw on paper. We practiced a lot. Every time I see her take a crayon on her own and start drawing, I feel an overwhelming sense of joy. That one was a long time coming, and now it feels so good to see her scribbling away.

So in order to get Emmy to play pretend, we practiced. We put clothes on baby dolls. We cooked toy food in little pots and pans. We wheeled toy trains around a track and demonstrated how to say “Choo choo!”

We put toy phones to our ears and said, “Hello, Mommy. Hello, Daddy.”

And when Emmy spontaneously put a toy phone to her ear and said, “Hello,” I let it all sink in and appreciated every single second of that small gesture.

Right now, she imitates us a lot. But when she was younger, she would just watch intently. I used to push trains around the track, while her eyes were fixed on my every action. I would think, “Is she getting this?” And then, a few days or weeks or months later, she would totally impress me by imitating my exact motion and vocal expression. She was paying attention! She was drinking it all in and then showing off her skills in her own time.

I believe that she gets it long before she actually shows it.

And, as I’ve learned to follow Emmy’s pace, there have been many benefits:

1. I don’t make myself crazy with baby/toddler milestone books. I can’t tell you the last time I looked at one of those books, but I think Emmy was probably a few months old. Why fixate on a timeline that probably won’t apply to her and will just make me frustrated?

2. I burst with pride when she hits a big or small milestone. I don’t grumble, “Jeez that took forever.” Instead, I say, “AHHHHH!!! Look what she’s doing!!! Go Emmy!”

3. I really do appreciate the little things more. Here are a few things she did that knocked my socks off and caused me to savor every second:

-She “drove” a car at an amusement park without any prompting. The way she turned the wheel was just glorious. There’s a picture at the bottom of this blog entry: https://williamssyndromesmile.com/2013/09/04/when-you-really-really-really-need-a-vacation/

-She started finishing songs and doing the hand motions. I probably sang “Wheels on the Bus” 7,895 times without her joining in. And then, one day, I started to hear this little voice finish the lines with me. Music to my ears.

-This is a big one. In the past, when she’s been ready to take a nap, I asked “Nap?” and she responded, “Nap!” But lately, when I ask “Nap?” she responds, “Book!” because she knows that I always read her a book before putting her down for a nap. It seems like no big deal, right? If a typical child said, “Book,” it probably wouldn’t be cause for excitement. But it shows that she’s remembering what comes before and after. She gets it.

For me, appreciating the little things hasn’t revolved around the usual milestones. When she started walking, of course I was ecstatic. It was awesome to witness, and I loved cheering her on. But I’ve felt just as much excitement, if not more, over something much smaller — like the day she spontaneously picked up a toy phone and said, “Hello.”

Pint-Sized Professor

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PintSizedProfessor

We’ve been knee-deep in questions lately. At four years old, Charlotte wants to know everything about everything.

I LOVE her curiosity and sharp memory. She really tries to delve down into the essence of any topic. However, the ongoing questions often cause me to realize that I am pretty clueless about the world in which I live. Or I know the answer but can’t explain it very well (especially when it’s, like, 6:30 am).

“What time exactly do skunks come out at night?”

“What does the word ‘theme’ mean?”

“Who are all of the characters in Batman?”

At the zoo, we saw a sign in front of the empty wolf cage that said the wolf was out for surgery. So she asked, “Can you tell me all the possible reasons that a wolf would have surgery?”

WOAH!

And this one was my absolute favorite:

She asked me if I played video games when I was a kid, so I said that I used to play a game called Super Mario Brothers.

Then she asked, “Can you tell me everything about Super Mario Brothers?”

So I replied, “Well, there were 8 levels…I think. And you had to rescue a princess…”

And then she said, “Can you tell me about all of the bad guys?”

I’m pretty sure there were about 500 bad guys in Super Mario Brothers. And most of them are hard to describe, like that brown mushroom thing that you jumped on…but I tried to tell her about every one I could remember.

Here’s the thing: Even though she’s the one asking the questions, she ends up teaching me more than I could ever learn on my own.

We were at my friend’s house this summer, and Charlotte wanted to try swimming in her pool. She is still very much learning how to swim. We practice every once in a while, but she’s just in the beginning stages of learning.

When she got in the water and wasn’t able to swim PERFECTLY, she freaked out. She bawled hysterically and said, “I want to do it! I want to swim!” She had only practiced a couple times and already wanted to be an expert.

I said, “Charlotte, you just started swimming, honey. It’s going to take some time to get really good.”

And she cried, “I don’t want to wait. I want to be perfect now.”

This is SO me. I want to be an expert at everything I do right off the bat. I get frustrated when I can’t master something after 2 seconds of trying. I don’t have a lot of fortitude in the face of adversity. After years and years and years of living like this, I am trying like heck to change. I don’t WANT to be a perfectionist. It holds me back. To me, being a perfectionist doesn’t mean being perfect at everything. It means fear of failure to the point where I won’t try new things unless I know I can succeed.

The strange part is that I was sure I hadn’t passed this down to Charlotte.

I’m conscious of this trait, so I don’t even utter the word “perfect.” I encourage her to just have fun. I am incredibly aware of this thing that I have — this drive for perfection — and how much it holds me back, so I am careful about everything I say to my kids in this regard.

Now that I’m learning more about genetics, I’m convinced that I’ve passed my traits down to Charlotte without even intending to. I think she got the perfection gene.

On the long drive back to our house, I tried to reiterate to Charlotte that she should just have fun and put in hard work and not worry about being perfect because, frankly, there is no such thing! I told her that it’s also ok not to be the best at everything. I was very proud of my speech! Life lesson #375 in the books!

Then she said, “Mom, have you ever not been the best at something?”

ARG ARG ARG. And, now, we turn it around on me.

I have such a hard time admitting the times when I’ve failed. These are certainly not my proudest moments.

But my pint-sized professor wanted an answer.

So I responded, “Sure, it’s happened a lot.”

“Can you give me an example?” came the voice from the back.

ARG. ARG. ARG.

Swallowing my pride, I cheerily said, “Of course! Let’s see…there was the time that I didn’t make the All State Band. That really hurt. But I also realized it was because I didn’t practice my scales.”

Phew. It was good to get that off my chest. And now we could move on to —

“Mom,” came the voice from the back. “Can you give me another example of a time you weren’t the best?”

I took a deep breath and put on a smile. “Sure! There was the time that I got a bad grade on an essay, and I was disappointed because I worked really hard on it.”

Ok, now for another topic —

“Mom…can you give me another example of a time you weren’t the best?”

My ego was officially crushed. For the hour long ride, I had to come up with every example I could think of. Charlotte wanted it all. A perfectionist doesn’t like to admit defeat, and I had to spell out all of the failings I could remember — in excruciating detail.

When we arrived back home, I thought about paying her for the therapy session. A teacher and a therapist in the same package!

Charlotte doesn’t just want to hear the talk. She wants me to walk the walk. If I tell her to just have fun and not worry about being the best, it’s meaningless. I have to show her how I’ve done it in my own life. And, gosh, I’m still working on that one.

What I love is that she’s the teacher as much as she’s the student. Her beautifully probing, curious questions get right to the core of who I am. And, for my pint-sized professor, I’ll do anything.

Gratitude

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Gratitude

I have a confession. I can be kind of a complainer.

You probably wouldn’t know it from reading this blog because:

(1) I’m not really focusing on the trivial things about my life. I’m not going to put my to-do list on here, though I would really like for everyone to help me tackle it collectively! 😉

(2) Most of my complaints come when I’m talking. When I sit down to write, I’m able to hone in on the positive.

(3) I am constantly striving to be optimistic. It’s a personal goal of mine. So I’m trying to put the good energy out there!

But, really, I can be kind of a complainer. It’s a quality that I very much dislike about myself and one that I’m trying to change.

So I am proud of a huge stride I made in that direction yesterday!

Yesterday was my 35th birthday. I’m a big, big birthday person. I’ve always enjoyed my birthdays. That has changed slightly as I’ve gotten older and found a few grey hairs but, for the most part, bring on the presents and the cake!

But yesterday didn’t feel much like a birthday — at first. Earlier in the week, Emmy and I traveled to Kentucky to meet with a wonderful team of Williams syndrome researchers, and yesterday was our flight home. Due to bad weather, we ended up getting stranded for 6 hours in our connecting airport, Charlotte (coincidentally, also the name of my older daughter!). This wasn’t just any 6 hours, but the 6 hours around dinner and sleep time. Yikes.

It had been a long trip, and I was exhausted. Not Emmy though! She wanted to run. The airport was packed with people waiting for delayed flights, and Emmy got her exercise running in and out of people and their luggage (with me trailing behind calling “Emmy! Emmy!”). This kid was having so much fun. If someone dared look her way, she would flash a huge smile, turn on her heel, and keep running. In the middle of the running, she would check back in with me for her supply of crackers to keep her going.

It occurred to me that chasing my kid through a busy airport for hours was not how I imagined spending my 35th birthday. It also occurred to me that this is the same kid that had heart surgery a couple months ago, and now her energy was limitless. When people remarked on how cute she was, I just wanted to grab them and say, “Let me tell you what she’s been through!”

When I managed to corral Emmy for 2 seconds, a fellow passenger came up to me and said, “They might cancel our flight altogether. They’re going to make the call at 9:00 pm.”

I stared at her blankly. I had already been at the airport for 6 hours, and this flight might still get canceled? I imagined finding a hotel room and then a taxi, all without our checked luggage and spare diapers. I imagined Emmy jumping on the hotel bed at midnight. I looked over at the flight board. Every flight going to our destination said “Cancelled” next to it. Except ours. Ours still said “Delayed.” There was literally a column of red “Cancelled”s and then our beautiful flight — a shining beacon of hope — that was still holding strong.

And 15 minutes later, they made the call that we were going to take off! I nearly hugged the person next to me. I was suddenly filled with so much gratitude.

We took off around 10:00 pm. Emmy curled up on my sweatshirt, and slept the whole flight. She’s actually quite good on planes. Whenever we board, people always look at me like, “You seriously brought a child on this flight?!” And then when we land, they give me big smiles and say, “She was so GOOD! So QUIET!” She knows how to make friends…

So Emmy slept, and I sat there thinking about my 35th birthday, which was nearly over. I could complain about everything under the sun. For sure, there was A LOT to complain about. I could go on for days.

Or I could switch my mindset to gratitude.

I could start with “thank you”s.

My daughter, who had heart surgery a few months ago, was just running around. Thank you. Furthermore, our flight was the only flight that wasn’t cancelled. Thank you. We were going home! I couldn’t wait to see my older daughter, Charlotte, and I also couldn’t wait to see my husband. Thank you.

I decided that I didn’t want to ruin my birthday with complaints. I wanted to enjoy it. So, while Emmy slept, and as I felt the plane hum under my feet, I kept running a list in my head of things to be thankful for.

I told myself: There are many reasons to want and many reasons to be unhappy. We can find them almost anywhere. Today, I choose to be thankful for what I have.

It was an important lesson for year 35.

And when I saw my sweet husband at the airport, with a big bunch of yellow roses, I was so thankful that he knows that birthdays are special to me too.

For all that I could possibly complain about, today is different. Today I choose to be thankful.

When You Really, Really, Really Need a Vacation

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Vacation1

I remember saying, “I really need a vacation” at various points in my life. This year, I REALLY, REALLY, REALLY needed a vacation. As in — not optional. As in — about to lose my marbles.

We’ve been going nonstop for so long now. We’ve just been pushing through. We found out tough pieces of news and dealt with surreal circumstances (like heart surgery). And with every hit, we would just keep trudging on forward. When you’re a parent, you don’t have the option, right? You can’t just hit the “pause” button. You have to deal with every single card you are dealt — at that exact moment. I so badly wanted to push “pause,” but I had no other choice.

Though, the whole time, I had my eye on the prize.

Vacation.

A friend sent me this funny article about vacationing with kids: http://www.huffingtonpost.com/steve-wiens/with-little-kids-you-take-trips-not-vacations_b_3787677.html

It’s really true. Vacationing with kids is nothing like that easy breezy trip to Aruba that you took a long, long time ago. We’ve taken a few trips with the kids, and usually I’m most relaxed when I return back home.

Not this time.

I don’t know if it was the lack of TV’s, the disappearance of a certain “to-do” list, the kids always having cousins to play with, or the amazing knock-you-over ocean waves. IT WAS WONDERFUL. All of it.

And then I came home. And there was my “to-do” list, on my desk, staring me right in the face. Ugh.

I need to find out how to get that vacation feeling every day. Even if I can just capture it for 5 minutes. Ok, I’ll take 5 seconds! I just want to bottle that feeling and pull it out once a day. Because I’ve discovered this: I really, really, really need another vacation. 🙂

Vacation2

The Secret I Didn’t Know I Was Keeping

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Secret

I talk openly about Emmy having Williams syndrome. I don’t tell every stranger I meet but, if it comes up, I’m ok with sharing our experience.

When we first found out about Williams syndrome, when Emmy was 5 weeks old, we were advised not to publicize it just yet. A doctor told us that not everybody would understand what the diagnosis meant, and she wanted people to get to know our family before labeling us as “the others.” As time has gone on, and especially as I’ve gotten incredible support from those around me, I’ve felt much more comfortable sharing our story. I know that some people keep quiet about a diagnosis because they don’t like that their child has a label. But I believe Emmy is much more than a label. If I believe that, and I project it, then I’m hoping others will see Emmy in the same light–as a whole person.

But, in my openness, there was still one person left to tell…

Charlotte is 4 years old, and I was waiting until she was 6 to sit her down and tell her a story that another mom relayed to me. She told the same story to her 6 year old daughter about her son, who has Williams syndrome:

If we look at ourselves as a book, we might be composed of chapters from 1-23. Well, some people are missing a couple pages from chapter 7. (Williams syndrome is caused by a deletion of a region on chromosome 7.) The book is still complete. You can understand the entire story as a whole. But, because there are a couple pages missing, there are some differences from a person whose book isn’t missing a couple pages…

I had it all mapped out. I just needed to wait another 2 years for her to really get it.

While I was waiting, I realized that I couldn’t explain things to Charlotte fully. I couldn’t really explain why we have therapists coming to the house to work with Emmy. I couldn’t really explain why I take trips to Kentucky with Emmy to see a special team of researchers. I couldn’t really explain why she had a “boo-boo on her heart.” I couldn’t really say why we were doing walks with hundreds of people to raise awareness. Sure, I was coming up with decent explanations, but they weren’t getting to the real, core issue.

I longed to tell Charlotte that Emmy has Williams syndrome, but I didn’t know if she was ready. Honestly, I didn’t know if I was ready. I was worried that Charlotte would see her sister differently, and that thought terrified me.

I posed a question to our trusty Williams syndrome community. Was Charlotte too young? And, moreover, how do I even tell her? I knew the book/chapter analogy wouldn’t make sense for her age.

As always, I got lots of great advice. Most importantly, when telling Charlotte, I had to keep it simple and general. Only give her as much information as she needs. She will ask for more when she’s ready.

So, while we were having a nice, relaxing dinner, I exhaled and said, “Charlotte, have you ever heard the words ‘Williams syndrome’ before?”

She shook her head and said, “No. What’s that?”

I was really surprised! I thought, for sure, she had heard us say it. Though, usually, Dan and I say “WS” because it’s shorter.

And here is where my story falters… Because as confident as I felt 2 minutes prior, as much as I thought I was ready to tell her, I doubted my ability to deliver the message correctly. Whoopsie! I dug my hole and couldn’t get out. I gulped and looked over at Dan, raising my eyebrows helplessly.

He came to the rescue and explained that Emmy was born with something called Williams syndrome, and that means that she will do things differently. And that’s why she had heart surgery. And that’s why Mommy takes her to Kentucky. And that’s why teachers come to the house to help her practice going up and down the stairs. He finished with, “But we’re all different. So that’s ok. Everyone is different.”

Charlotte thought about it a second and then offered, “Just like Emmy has straight hair and I have curly hair?”

“Right,” Dan replied.

This launched Charlotte into a 10 minute discussion about her hair versus Emmy’s hair, which made me realize just how precious a 4 year old mind is.

Then the discussion tapered off. And, suddenly, I felt lighter. I didn’t even realize that I had been clinging so tightly to this secret that it was pulling me down. I hadn’t even considered it a secret. I just thought Charlotte wasn’t ready. But, in keeping it quiet, I felt like I wasn’t including her in our lives. Everyone else knew but Charlotte. I didn’t realize that the weight of her not knowing was affecting me so deeply. So I got up from the dinner table and, in doing so, I left that heavy anchor behind.

Being Present During The Bedtime Routine

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Beingpresent

Things with Emmy have calmed down a bit. She’s feeling much better, though she can turn SUPER cranky on a dime. I’m a worrier by nature, so I’m constantly checking her incision (It’s quite a sight. Eek!) and watching her closely on the monitor during naptime. Because she’s doing so well and is generally happy, it feels as if the past month were a dream.

I can’t believe that happened… Did I watch a movie, or was it real? I’ll think about snippets of scenes from Emmy’s time in the hospital and it’s as if I’m struggling to remember something that happened 10 years ago. I think my lack of memory is my body’s way of protecting myself from going back there. At some point, I want to write it all down. I just can’t do it yet.

One ongoing lesson that really hit home during that insane experience is that I need to be present with my kids. I’ve known this for a while now, but it’s difficult for me to put into practice. I’m a multi-tasker. I want to do, do, do. It’s hard for me to sit and just be.

But time with my kids is so precious. Sometimes I have to just be and not think about my never-ending to-do list.

I read a quote recently that stuck with me. I wish I could remember the author because I want to give him/her credit. But my brain is fried…

Here’s my paraphrase of that lovely quote: When you’re spending time with your kids, don’t rush through it to get to the thing you have to do. Your kids are the thing.

That quote speaks to me at bedtime. We have a routine, and the routine has gotten very long and multi-layered. Emmy is easy to put to bed. She drinks her milk, says “night night,” gets 2 books and a song, and falls right to sleep. Charlotte, on the other hand, likes to stretch out the bedtime routine. It has gotten longer and longer and longer…

First it was a bath, book, and bed.

Then it was a bath, 2 books, and bed.

Then it was a bath, 2 books, think-about-a-story-in-your-head, song, water, two clips in hair, and bed.

Now it is a bath, 2 books, think-about-a-story-in-your-head, song, water, two clips in hair, hug from me to you, turn off and on the light to test darkness levels, turn off and on the colors of the ladybug night light to find the perfect color, and bed.

Once we manage to say “Night night” and close the door, Charlotte still cries 3-4 times for us. We have to go back in there and often replay parts of the routine (maybe an extra hairclip or a different color on the ladybug).

The problem is that, during all of this, I am thinking of the things I have to do! And there are many of them! After we put the kids to bed, Dan and I spend at least 2 hours getting chores done and cleaning up.

So, while I would like Charlotte to be the thing that I am focused on, while I would like to just be and enjoy this time together, I can get increasingly frustrated at the long list of add-ons to the routine.

I know she does it on purpose. Of course she doesn’t want to go to bed! I’m a night owl myself, so I can’t blame her. But it’s hard for me to cut the routine short because I am so very conscious of the fact that, when she’s a teenager, she’ll probably be stomping around the house in all black and ignoring us.

I know I will eventually long for this endless nighttime routine. I just know it!

I’ll catch a glimpse of my future self asking, “Hey, honey, would you like me to think of a story in my head?”

And I’ll see teenage Charlotte roll her eyes and say, “Get a life, mom. No one has time for that.”

It’s true. One day, she won’t have time for me. So I’m conscious of the fact that I have to treasure this time with her instead of getting to that next thing. (Though I maintain the the bedtime routine has gotten a little out there. She’s a smart girl, and I’m a sucker for “Just one more hug from me to you!”)

She’s Home!

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ShesHome

After spending 22 days in the hospital, Emmy is home!!

The best part is holding her whenever I want. When she was in the hospital, I would feel uneasy holding her. She was covered in wires, and I didn’t want something to come loose. Every time I heard a beep, I had a mini-panic attack.

One day, our nurse gently handed her to me, and it literally looked as if she were putting a bunch of wires in my arms. I had to search to find Emmy!

Now, I can scoop her up without worrying that I’m pulling out some type of important oxygen-thingie (to use a technical term).

Emmy is a totally different kid from the day she went in for surgery. It’s really amazing how much she’s changed!

First of all, she’s bigger. Her teeth are bigger, her hair is longer, and her face looks more like a toddler.

Second, her muscles have gotten weak from lying in a hospital bed, so she can’t stand or walk yet. When she tries to get up, her sea legs go in all directions. We’ll meet with her physical therapist soon to get her moving again.

Third, and most surprisingly, her vocabulary has expanded! I didn’t see this one coming at all. She’s throwing out words that she’s never said before, like “tree” and “house.” And she’s much more communicative about her wants and needs. The cutest word she’s picked up is “Yay!” When I give her something she wants, she thinks about it for a second, and then her little voice happily says “Yaaaay!”

Fourth, and most importantly, the original problem she had with her heart seems to be fixed, thanks to a wonderful surgical team at the hospital.

And, of course, there’s someone else who is over-the-moon to have her sister back home:

ShesHome2

Yaaaay!

In Love

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Love

I learned something really incredible over the past three weeks. I am so in love with this kid.

I used to think it was weird when people said they were in love with their kids. It seemed like a strange turn of phrase. I used to think that we are in love with our spouses or partners — but we love our kids.

I found out what it meant to be in love with my oldest child when Charlotte turned 1 year old. That’s when I felt it for the first time. She turned from a little baby into my little buddy. She was fun to interact with, and I saw her personality start to emerge. I remember taking pictures of her eating blueberries outside on the grass. She put a play phone up to her ear — upside down. And, as I snapped away, I thought, “Wow, this is it. I am in love.” I finally understood what that phrase meant.

With Emmy, the road has been different. I was overwhelmed with a lot of information early on that scared me. She was only 5 weeks old when I found out that she has Williams syndrome, and I was really intimidated by what that meant for her future and ours. And then there was a lot of work to do. We had to arrange doctors and call physical therapists and organize medical bills. There was a lot of stuff getting in the way of my connection with my daughter.

These past three weeks have changed everything. When her heart stopped beating and the doctors were trying to save her, all of the other stuff disappeared. I was so purely connected to my daughter, and I wasn’t even in the same room as her. I couldn’t even see her. The doctors and nurses were inside her room, trying to save her life. And I was in the hallway, kneeling on the floor and sobbing.

But the other thing I was doing was talking to her. I named all of her favorite toys and activities. I named family members. I named friends. I begged, “Come back. Come back to me.” There must’ve been twenty people between us and around us, but I felt as though it were only the two of us. That connection, that bond, was so strong and so pure.

As special needs parents, and parents in general, we have many hurdles to overcome and struggles to deal with. Over the past two years, I felt that stuff getting in the way of a pure connection to my child. It felt like baggage, and it was heavy.

Being in this position with Emmy made me realize that I need to focus on keeping a pure connection to her. Yes, she has special needs. And it is important for me to help nurture those needs. I actually love that she has Williams syndrome. The diagnosis has brought many, many wonderful qualities with it. And I love so many of the people I’ve met that Emmy has brought into my life — caring doctors, incredible nurses, excellent therapists, sweet teachers; supportive friends. I would never have met them otherwise.

But, at the end of the day, when I tuck her in at night, the only thing that matters is that Emmy is my daughter and I’m her mom. And that connection is so very strong and pure.

I am absolutely, head-over-heels in love with her.

Two Weeks

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TwoWeeks

It was exactly two weeks ago that we brought Emmy in for heart surgery. The surgery went beautifully, by all reports, and she was brought up to the Pediatric Intensive Care Unit to recover. We were expecting to be in and out of the hospital in about 4-5 days.

It was in the recovery room that she suddenly went into cardiac arrest — twice. People with Williams syndrome can have complications during and after surgery (problems with anesthesia, blood pressure changes, etc), but we thought we covered all of our bases and did all of our research. We thought we were beyond prepared. We thought all of the doctors with whom we spoke (prior to surgery) were beyond prepared. It turns out that, sometimes, parents can only control so much.

What happened next, though, was miraculous. The doctors and nurses saved her life. They acted quickly and smartly. They turned the recovery room into an operating room. They opened her chest back up and put her on a bypass machine called ECMO. At that time, Emmy’s heart wasn’t beating on its own. The machine was doing all the work.

I will be forever indebted to the people who saved her life that day. I am also indebted to the wonderful doctors and nurses who cared for her over the next two weeks. And I’m indebted to those to offered us prayers and support through my blog and Facebook and texts and emails and voicemails. I’m sorry that I haven’t responded to everyone yet! I’m still kind of in a fog.

Over the past two weeks, Emmy slowly recovered. One by one, the machines were taken off. It seemed to take forever. Two weeks felt like two years.

But we got our reward last night when Emmy opened her eyes for the first time in two weeks.

And, today, a music therapist came to visit — to see if we could pull Emmy out of her shell a bit more. Emmy still has a c-pap in her nose to help her lungs. She hasn’t spoken a word, though she’s tried. Her voice is very small and sounds like a wheeze. She hasn’t smiled yet.

But when the therapist started playing the guitar, Emmy weakly reached for maracas. She gingerly took one in each hand. And, with two little hands that have barely moved in two weeks, she shook the maracas to the song.

“Hello Emmy,” the therapist sang. “I want to say hello.”

By This Time Tomorrow

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ByThisTimeTomorrow

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

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

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

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

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

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

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

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

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

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

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

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

I hope Emmy’s surgery and recovery go beautifully.

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