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!

Pamper Yourself

PamperYourself

Some people have yoga. Others have meditation. I have the mall.

No, not them all. THE MALL. 🙂

I haven’t been to the mall in a while. I mean, I haven’t been to the mall by myself in a while. Sure, we run into the Lego store, chase the kids around a bit, have a quick dinner, and head home. We’ve done that a couple times. That’s not relaxing.

But there’s something that happens when I go into a mall alone. It’s a very particular mall, actually — the one I used to go to as a young girl. The elevator music has a calming effect, the perfume-y smell is enchanting, and the tile under my feet feels familiar. I used to go to this mall a lot as a kid, and it brings me right back to childhood. My cares melt away. I’m a kid again.

I haven’t been to this mall in a long time, though. First of all, I don’t have a ton of alone time to go wandering around malls aimlessly. And second of all, I think about the money aspect. It’s not exactly like I’m independently wealthy. Third, I have 10,000 other things to do with my time — things that are seemingly more productive like cooking, cleaning, working on a project, procrastinating…important things.

Well, I’ve been craving a vacation. The heavy winter has gotten me down, and I’m turning into a shut-in.

Out of the blue, the mall beckoned me with its promises of pampering.

But, no, I argued. I can’t waste time at the mall. I have things to do.

Yes, that’s true. But when are we allowed to pamper ourselves? We jump from one thing to the next and find ourselves way down at the bottom of the totem pole. It’s self-inflicted though. If I told my husband that I wanted to go to the mall alone, he’d usher me right out the door. It’s not that other people are holding me back. It’s that I’m holding myself back. I think of all the practical things that I should be doing, and wandering around the mall with zero purpose is anything but practical. I also feel guilty taking care of myself. How can I possibly spend time on myself when I have other people to take care of?

I watch The Real Housewives (because who can look away), and I see how these people pamper themselves. The hair, the nails, the outfits. Who has time for that? I just reason that their luxuries come from being so rich. Of course they have time to do their nails. Then again, I’m sure there are rich people that don’t take care of themselves like these ladies do…

How much time would it take me to put on makeup in the morning or pick out a cute outfit or do my hair? I actually haven’t gotten a haircut in almost a year for two reasons. One is that I have better things to do than sit in a chair for an hour (so I say). And the next is more practical. I have curly hair, and other girls with curly hair will backup the fact that things can often turn disastrous when someone is cutting into your locks. I’ve had some really weird, eccentric cuts done in a salon because it’s fun to experiment with my hair. So I try and stay away.

But then I’m at the point where my hair is a frizz-ball, my face is screaming for moisturizer, and my clothes are wrinkled. Is this really what it means to be busy? Or is this something else? LIKE NOT CARING ABOUT ONE’S SELF?? (Didn’t I learn anything from this post last year? https://williamssyndromesmile.com/2013/07/15/self-care/)

Enough, I say!! It’s time that I put on my Real Housewives facade and pamper myself.

So, for the first time in a long time, I went to the mall alone. Just me and my thoughts. I took my time eating lunch. I walked into all the stores — up and down the aisles until my feet hurt. I bought some body lotion for my super dry skin. And I just let myself be. I tried not to judge if this was a proper use of my time. I just let myself enjoy it for what it was — a day of pampering.

And, as I drove home, I made the bold move of calling a salon to see if they would take me and my frizzy hair. They had an opening! Funnily enough, getting my haircut wasn’t the nightmarish time-waster that I imagined. It took a half hour and was easy as pie. The hairstylist also happened to be a curly specialist, so I lucked out.

Because I took a little time to do some pampering, I feel completely amazing. That’s all it took. Just a few hours of wandering around a mall plus a haircut, and suddenly I’m rejuvenated for weeks. I didn’t have to spend David Foster’s money (Real Housewives reference) to get to this point. It cost me a few hours and a couple bucks. Totally reasonable.

I think everyone needs to waste time on his or herself every once in a while. And I don’t think that sitting in front of the tv like a zombie or playing on one’s phone counts. I mean really, foolishly wasting time doing something that you wouldn’t normally do — preferably outside of the house. Just waste time for a day and don’t judge yourself. A little pampering goes a long way.

To my husband: This goes both ways, you know? I want you to tell me how you’re going to waste time on yourself one day this weekend. No judgement or guilt allowed. Just some good, solid pampering.

Tradition

Tradition

My husband is really into tradition. I mean, REALLY into tradition. Actually, the very first post I wrote was about how he buys green bagels every St. Patty’s Day: https://williamssyndromesmile.com/2013/03/17/green-bagel-morning/

He doesn’t just keep old traditions alive, though. He also spontaneously creates new ones! I was heading home with the kids when he called to say that he put the holiday lights on the house and wanted Charlotte and Emmy to turn them on when we arrived.

“It will be a tradition!” he declared.

I love that Dan doesn’t live by the same imaginary rule book that I have in my head. My rule book says that I preserve the traditions that were handed down to me, but I don’t create new ones. Who am I to create a tradition? Those things were carefully thought out by my ancestors! But Dan has no qualms about creating a tradition TODAY.

And I’m ashamed to say that I kind of brush them off (sorry, babe). Traditions are not as weighty for me. I have a few precious traditions surrounding Christmas that remind me of childhood but, other than those, I don’t really think about traditions for the rest of the year.

Over the weekend, I found myself really appreciating the fact that Dan keeps traditions alive when we got the tree and decorated it. And as the kids put ornaments on the tree, I was so aware of how this tradition forces you to be present. It forces you to put down the phone, look at every ornament, tell stories about the ornaments, find the perfect branch, take photos to capture the moment, admire how your daughter is so careful with the precious ornaments when just last year she would’ve been the opposite, notice how your daughter carefully stands on the stool to reach the top branches, and realize how much taller she is than the year before. When you’re decorating the tree, you are forced to be in the moment.

How many times do I swear I’ll appreciate every moment–and then still let all of them pass me by?

And how many times do I swear I will PUT DOWN MY PHONE…and then will see it calling to me from the table?

“Put it down, woman!” I want to shout. “Put it down!” Because when I’m looking at my phone, I am anywhere but in the moment.

I think it doesn’t matter so much when I’m in the check-out at the grocery store and the person in front of me has 1,000 bags of candy to ring up, and I am just passing the time by looking at my phone. I think it DOES matter a lot when my kids need my undivided attention.

On Saturday, I was at a kids’ gym with Emmy, waiting for her class to start. I was watching the previous class wrap-up through the large, glass windows. And here was a boy, probably less than 1 year old, throwing a ball to his dad. And here was his dad, looking at his phone. The ball just fell in his dad’s lap, and he didn’t even notice his son’s effort. Ugh. What are we becoming?

So if traditions, like decorating the tree, do nothing more than force me to put down the phone and be present, then I am incredibly grateful that my husband creates new traditions every week. The more, the merrier! This time with our kids is precious and fleeting. The celebrity gossip and articles with snarky comments that I read on my phone will be around forever.

Thanksgiving

Thanksgiving

This Thanksgiving has been my favorite so far, and the actual day isn’t even here yet! Just listening to Charlotte recite what she learned at preschool every day has been a lesson in life. At four years old, she’s full of amazement, wonder and fun facts (yesterday was something about white and red blood cells that even I didn’t understand).

I love watching her face as she laughs her way through “The Thanksgiving Song”: “I’m glad I’m not a turkey…They stuff you and bake you, and then they all taste you! I’m glad I’m not a turkey on Thanksgiving Day.”

And every day this week, when she’s climbed in the car after school, she starts excitedly talking about gratitude.

“Guess what I’m thankful for today?” The appreciation for life literally pours out of her.

As I was driving her home, I thought, “At what point does this change?”

Because I’ve certainly experienced it myself. As a child, I had that feeling of amazement and gratitude on a daily basis. I remember bouncing a tennis ball against the side of my garage for hours–just enjoying the sun and the feel of the ball in my hand. I was just happy to be alive. Of course, I wasn’t consciously thinking about being alive. But I was enjoying the moment–taking pleasure in the littlest of things.

And as I got older, that feeling began to seep away. First, there were some mean girls (ugh), and I allowed my spirit and sense-of-self to get crushed. Then there was the sinking feeling that came with getting C’s on Math tests. And then there was the pressures of bills and jobs and life. Sure enough, that incredible feeling of being in the sun with a tennis ball in my hand faded and, in its place, came thoughts of “Why me?” and “I can’t do this” and “Life is so hard.” I kept feeling as though life was just dropping things on my doorstep, and I had to deal with them.

I finally realized that it wasn’t healthy to live that way–to always feel as if life owed me something, and it was my fault for not getting the best out of it. My four year old doesn’t feel that life owes her anything. On the contrary, she enjoys all that life has given her, and she voices her gratitude aloud.

I don’t want that shift to happen for her. Is it inevitable? Gosh, I hope not. How can I help her stay grateful for what she has instead of always reaching for something more? Because that’s where true happiness lies–in looking at what’s around us and saying, “Thank you.”

Today I can make a choice. I can always reach for something more, different, or better…or I can land right where I am. So here’s where I am today: I’m in my soft, colorful pajamas on a Wednesday morning. I’m typing away in the study, listening to the soothing sound of rain on the window. My husband is in the kitchen making mac-and-cheese for the Thanksgiving party at school. My two-year-old is still fast asleep in her bed. And the sound of a happy four-year-old playing make believe floats through the air. Thank you, life.

The Little Things

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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.”

Gratitude

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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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. 🙂

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Being Present During The Bedtime Routine

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!”)

To See or Not To See

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Emmy is off bypass! Her heart is beating on its own!!!!!

Yesterday, it was determined that a surgical team would try and take her off bypass because she was bleeding. We were incredibly nervous. Last time she came off bypass, we ended up with 2 cardiac arrests and a very, very tenuous situation. One day, I’ll write about exactly what happened, but I can’t even go back there in my mind right now. I’ll put it this way — we almost lost her.

This time, she tolerated the move off bypass very nicely, and we had a beautiful night next to Emmy with her heart beating away at nice steady pace. Today, she is still sedated, and she is on a respirator to help her lungs. Overall, she continues to have steady progress in the right direction!

I’ve experienced many amazing things over the past week and, again, I’ll write about those at a later date. I’m still in a hospital room with her, and it’s difficult for me to really reflect on anything until we are home safe and sound.

But I’ll tell you a story from yesterday…

It was Charlotte’s 4th birthday, and her wish was to see her sister. Yikes. We hadn’t planned on having her see Emmy from the beginning of this journey because we were only supposed to spend a couple days here. But with the complications, Emmy’s stay got longer and longer. And Charlotte got more and more curious.

“Why can’t I see her?”

“Just send me a picture.”

“Put her on FaceTime.”

“I know she’s sleeping. I still want to see her.”

My gut told me that it was time she saw Emmy. We seemed to be doing more harm with all the secrets and avoidance. Charlotte has had a tough time the past couple days. She’s a girl who loves routine, so all the craziness has really had an affect on her. We tried to shelter her from it, but kids FEEL things. Probably better than adults.

Even though my gut told me to bring her in to see Emmy, my mind flashed back to a few days ago when my sister came to visit. Upon seeing Emmy, my sister fainted! I must tell you — it is difficult to see Emmy like this. It isn’t glamorous by any means. But here I was thinking, if my 28 year old sister fainted, did I really want to bring a 4 year old in to this situation?

Turns out that there’s a Child Life team at the hospital, and they’re excellent. They prepare kids for seeing their siblings in this state.

So for Charlotte’s birthday wish, I brought her to the hospital to see her sister. The wonderful woman from Child Life helped ease Charlotte into it. Before we went in, she gently asked questions about how Charlotte was feeling and described the contraptions that we would see in the room.

When we entered Emmy’s room, Charlotte’s eyes immediately went past all of the machines and landed straight on her sister’s sweet face. She was quiet, taking it all in.

After a few minutes, the Child Life specialist asked, “I see you’re looking at something, Charlotte. Do you want to tell me what you’re looking at?”

Charlotte nodded slowly and then said, “My baby sister Emmy.”

She barely noticed all the machines. She only saw her sister. It was beautiful.

We went into the waiting room to give Charlotte her birthday presents, and throughout the afternoon she kept asking to return to Emmy’s room — to see her baby sister.

Pre-Op

PreOp3

This is a picture of Emmy at the hospital after 5 solid hours of pre-op. This picture was taken after a 1.5 hour echocardiogram, an EKG, a urine test, blood work, an X-ray, and a few consultations with various doctors.

If it were me, I would’ve been curled up in a ball whimpering and pleading to go home. Emmy, on the other hand, decided to run around the lobby for 25 minutes. As I ran after her, exhausted, I thought, “Kids are tough!”

When we drove to the hospital early this morning, I thought about the last time I was preparing for surgery. Back then, it was a c-section, and I couldn’t wait to meet my daughter. I was beyond giddy. Going to the hospital to have a baby is such a thrilling time. You don’t know who is inside of that belly, and you just can’t wait to see his or her little face.

Driving to the hospital for that same baby’s pre-op for heart surgery is a different feeling altogether. The excitement has vanished. In its place, are hearty doses of fear and anxiety.

“How did I get here?” I kept thinking.

It was a long, nerve-wracking day. I kept my eye on the clock, wanting to rush through it all.

And then I look back at that picture of Emmy who, after hours of testing, was dashing around the lobby. She was waving her hands over her head, saying “Hiiiiii” to anyone who looked her way.

And then I think back to our weekend when we watched this little girl, my oldest, run around happily. She knows that her sister has a “boo boo on her heart” and enthusiastically proclaimed that she would miss her when she goes to the hospital but would see her soon.

PreOp2

As much as I want to fast forward to the future, I am acutely aware of these fleeting moments in time.

I keep thinking, “I want this to be over.  I want this to be over.”

But if I keep rushing through the days leading up to surgery, I’m missing what’s right in front of me. There’s a sense of happiness and positivity radiating off my children, which I’d like to bottle and hold close to my heart.