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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The Secret I Didn’t Know I Was Keeping

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Secret

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

“Right,” Dan replied.

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

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

The Scar

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TheScar

I have to be honest. Before Emmy had heart surgery, I was really worried about the scar. Baby skin is so pure and soft. It symbolizes newness and promise and possibility. Whenever they show diaper commercials on tv, they zoom in on the baby’s chubby, soft, flawless skin.

Babies aren’t hardened adults with tough skin yet. They don’t know about the world and its difficulties. So the idea of cutting into Emmy’s gentle skin just slayed me.

Plus, I’m squeamish. I can faint at the sight of blood or anything resembling an open wound. When I was in middle school, I cut my finger in Woodshop class. I looked down at the blood and fainted, falling backwards and hitting my head on a metal filing cabinet. I was taken to the emergency room for the major gash in the back of my head, not the tiny cut on my finger.

So I was nervous. But I was desperate to be there for Emmy and not let my embarrassing squeamishness get in the way.

When Emmy first came home from the hospital, I was so happy to have her home that I felt like I shouldn’t care about the scar. My head told me to just be thankful that she was alive. But every time I glanced at the scar, I thought I was going to faint. From what I’ve seen of other kids, Emmy’s scar is particularly noticeable. Her surgery was back in May, and the scar still looks reddish pink. (Don’t worry — she doesn’t have an infection.) I think it’s because she was on life support for almost a week, and her chest remained open during that time. It didn’t heal as cleanly and quickly as some other scars I’ve seen.

Also, when she first came home, every time I looked at the scar, it brought back a rush of emotions. It reminded of the tough time she had after heart surgery and the fact that she almost didn’t make it. I felt like I was reliving it again and again and again. Those feelings have subsided a bit with time, although I can still go back to that hospital room in my mind with a word or a smell or the sight of an ID badge that says “Parent Pass.”

Emmy, on the other hand, seems quite comfortable with her scar! She points to it and say “boo boo.” She lifts up her shirt for people to see. One woman remarked that she seems proud of it. I hope she is. She sure earned it.

I want her to be proud of it as she gets older too. When we’re young, scars can be a badge of honor. And later in life, we can get more self-conscious. I have a scar over my eye from when I fell on my lunchbox as a kid. I never thought twice about it until I got older and started to critically examine my face in the mirror. “That needs to be plucked…that doesn’t look good…and, oh jeez, that scar…”

I hope I can continue to foster Emmy’s pride in her scar. A nurse recently said that she doesn’t like the term “congenital heart defect” because it attaches a negative connotation to something that kids should actually be proud of. They don’t have the scar because they’re defective. They have it because they are downright amazing.

I joined a group on Facebook called “Mended Little Hearts” for families of children with Congenital Heart Defects. Every time they post a picture of a little boy or girl and I see that scar peeking out from the top of a shirt, I feel an instant connection with a stranger.

“Emmy has that too,” I think.

The scar didn’t mar her skin like I feared it would. It didn’t take away from her beautiful, soft, gentle baby self. She still is my snuggly sweet little girl, full of promise and possibility. And now she has a badge of courage too.

These Are The Shoes

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These are the shoes that I first picked out for my baby girl, Emmy. I was so excited to have another baby and couldn’t wait to put her sweet little toes into these cute shoes. I pictured her walking around the playground, climbing up the steps to the slide, with these precious flowered shoes on her feet. I bought these shoes and put them in her drawer, waiting to embrace the day she took her first steps.

Well, she never wore them. They are still brand new.

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THESE were her first shoes. I’m not joking. A far cry from cute, eh?

Our first Physical Therapist (who was wonderful) determined that Emmy has low muscle tone and needed a more supportive shoe. She asked me to find some shoes at a thrift store which she was going to cut up (gulp). I scoured a thrift shop, using her specific instructions, and presented her with the cutest pink shoes I could find that still met her criteria. I was hanging onto the notion that Emmy’s first shoes would be sweet and girly. That’s when our Physical Therapist grabbed a scissor and started hacking away. She cut off the fronts of the shoes and then sewed on black straps, which were intended to hold Emmy’s foot tightly in place. She then glued padding to the inside.

Emmy wore those shoes for about a month, and I grimaced every time I saw them. I longed for the first pair that I picked out that were still sitting in her drawer, brand new.

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These are the shoes that Emmy wore after the frightful pair. She needed more support on the side of her foot, so we graduated to these white shoes. They say “My Baptism” on the side. I think most children wear their baptism shoes only once, but Emmy wore hers for months, which made people chuckle.

I had a woman stop me in a store, point to Emmy’s shoes, and say, “Oh, I remember when we all had to wear those ugly first walkers!”

What she probably didn’t realize is that nobody wears ugly first walkers anymore. Most baby shoes are blinged out. She didn’t realize that I didn’t have a choice in the matter, and there were very cute shoes sitting at home in a drawer, brand new.

The next step was to move Emmy into orthotics, which are braces that go inside shoes to help stabilize the foot. When this idea was first brought up to me, I thought, “NO WAY.” I pictured unsightly braces up to her knee. In fact, one of our therapists has a brother who wore clunky metal orthotics when he was younger.

But it isn’t about me. It’s about what’s best for Emmy. So we got her fitted for orthotics, which are much prettier and smaller than I imagined. You can barely tell that she’s wearing them, and she’s very comfortable in them.

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These are the first shoes Emmy wore with her orthotics. She loved to pull open the velcro strap on the top.

And, in the end, she didn’t care what her shoes looked like. She just liked walking around; getting into everything. Through all of the shoe changes, she didn’t blink once. She just wanted to get up and go.

She has no idea that I still look at those first pair of shoes and feel a pang of regret, a pang that she didn’t get to experience her first years as typical children do. Or maybe it’s my own experience I’m thinking about–the regret that I didn’t get to put those cute shoes on my baby when I really, really, wanted to.

Sometimes things turn out differently than we planned. I’m a VERY (read: obsessively) good planner, so that’s been a challenge. But what hasn’t been a challenge is looking over at Emmy’s bright, smiling face and knowing that we’re doing what’s best for her. Right now, she doesn’t need cute shoes. She needs support.

The Word “Retarded” Hurts People

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TheWordRetardedHurtsPeople

I’ve been hearing the word “retarded” a lot lately.

“This is so retarded.”

“That person is retarded.”

Or (what people sometimes think is a more clinical, respectful term) “That person is mentally retarded.”

Why shouldn’t we use the word “retarded”?

I’m going to give the most basic explanation: It hurts people.

End of story.

The arguments:

1. What am I supposed to call people who look/act retarded?:

Nothing. Chances are that you’re referring to people as “retarded” not to offer a compliment, but to point out a deficiency. Think about why you’re telling someone about that person. What’s the point of the story? If it’s not a positive story, then why share it? If you do have a positive story to share, think of another description: “The woman over there with the curly brown hair was so helpful!”

2. Isn’t “mentally retarded” a well-known term in the medical community?

I’m not a doctor, but I will tell you that I’ve never met a doctor (and I’ve met many!!) who has used that term with me. It’s an out-dated term.

3. But it’s harmless to say “That’s retarded.” I’m not talking about a person. I’m talking about a thing/event/activity.

The word itself is hurtful. And if you use it, your kids will learn that it’s ok to use it too. And if our kids use it, the word will live on and on and on… Also, you never know who you’re talking to. You never know a stranger’s set of circumstances. If you use the word around a stranger without knowing his/her background (“This baseball game is retarded.”), you have no idea how that word will impact the person you’re talking to. What if the stranger’s brother was once called “retarded”? What if his niece was once called “retarded”? I guarantee that, most of the time, your words won’t come across as fun but as hurtful.

4. Hey, lady, haven’t you heard of Free Speech? No one tells me what to do.

I’m a BIG proponent of people not telling me what to do. I’m kind of rebellious in that way. If someone tells me to make a left, I’ll go right. If someone tells me to have a cheese sandwich, I’ll have PB&J. I really, really, really don’t like when people tell me what to do. BUT if I know that my action has the potential to hurt someone else, I won’t do it. I do believe in Free Speech, but I don’t believe in causing pain to others–even perfect strangers.

5. People are so sensitive. There are so many words that we’re not supposed to use anymore!

I can count on 1 hand the number of words that are not appropriate to use. It’s really not that many. If you stay away from about 5 words when talking to others, you’re golden. 🙂

Self Care

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Self Care

I think most moms look at the words “self care” and cringe.

“I’m sorry–what? Care for myself? I don’t have time for that.”

We went to the beach on Saturday, and I put sunscreen on the kids at least 3 times each. I’m so worried about their precious, toddler skin burning. If they get even the slightest bit red, I’m right behind them–slathering on more white goo. I don’t want them to feel the hurt of a burn or, worse, be susceptible to skin cancer.

I was so exhausted from putting on their sunscreen, not just on Saturday but from the Sunscreen Dance that we do every morning of the week, that I skipped putting it on myself.

My skin? Not important. Their skin? SUPER IMPORTANT!

If I get a little burn, I’ll just use some aloe or something…

Well, I look like a lobster. Worse, I feel like a lobster in a pot. My body has been on fire since Saturday. It’s painful for me to carry a purse on my shoulder. Yesterday, Emmy gently brushed up against my back with a pretzel, and I thought I was going to lose my mind from the pain.

Really? Is this the lesson that will finally encourage me to jump on the self care bandwagon? I hope so because, right now, the feeling of my shirt resting against my shoulder is enough to make me scream.

I think of self care as being selfish. How can I possibly worry about myself when I’ve got kids to care for? How can I close the door to take a quiet bath when they might need me at any second? How can I curl up on the couch to read my book when I should be sitting on the floor playing with them instead?

Two things:

1. If I show my kids that I value myself then they, too, will value themselves.

2. If I take some time to address my needs, I am a much calmer, happier, and more relaxed parent.

Charlotte kept looking at my awful burn and saying, “Mom, you really need to use sunscreen next time.” By turning into a lobster, I showed her how little I care about my own needs. It’s actually embarrassing…to show my 4 year old how little I value myself. That needs to change if I want her to value herself. The apple doesn’t fall far from the tree, right?

Ok so, I finally took a step in the right direction. I put on my headphones and went for a walk. But not just any boring old walk! I played music that I can’t play when the kids are around. Charlotte has a great memory and repeats everything, so there are some songs that I don’t play because I don’t want to answer any questions about the lyrics.

Realization: It’s amazing what listening to my own music for 20 minutes does to my psyche. I felt myself instantly unwind. Self care isn’t as hard as I make it out to be! And it only took 20 minutes. Next time, I’ll try 30…

Thank you for the birthday wishes for Emmy! She had such a good time and blew out her number 2 candle beautifully–with a tiny bit of help from mom.

As Long As It’s Healthy

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AsLongAsItsHealthy

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

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

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

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

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

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

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

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

Because what if it isn’t healthy?

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

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

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

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

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

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

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

I spoiled her this year. She deserves it.

Teresa B

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Teresa

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

I can’t stop thinking about this little girl.

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

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

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

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

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

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

http://ourplacecalledhome.blogspot.com

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!