Finding a Home

FindingaHome

I forget that Emmy has a Congenital Heart Defect. I don’t know if other Williams syndrome parents feel this way, but I am very much focused on all of the various aspects of Williams syndrome…the heart defect seems almost secondary.

It SOUNDS ridiculous. Her heart is what’s keeping her going. Her heart is essential for life.

But when we found out she has Williams syndrome, those were the only 2 words I Googled. Not “Congenital Heart Defect.”

It could be that people with Williams syndrome can have a host of medical issues, so I was trying to absorb the laundry list of possible problems instead of focusing on just one.

It could be that I’m not a medical expert, so it’s much easier for me to research and comprehend other aspects of Williams syndrome.

It could be that I STILL have a hard time wrapping my head around the fact that Emmy was born with a serious Congenital Heart Defect, had open-heart surgery this past May, suffered 2 cardiac arrests, and spent a week on life support.

Whatever the reason, I’ve always seen Emmy falling directly into the Williams syndrome camp. And, therefore, the Williams syndrome support groups were initially my home.

But over the past year, I’ve found a home in another support group too — one for parents of children with Congenital Heart Defects.

I’m the only one in the group who has a child with Williams syndrome. But the people I’ve met as part of the group totally GET IT. They have been so loving and supportive and helpful and encouraging. When someone says to you, “I hear you. I understand,” it’s the best thing in the world.

So when we went to a Congenital Heart Defect walk over the weekend, I was so happy to see all of my support group buddies and a team of people from the hospital who came out to walk with us.

And there is one special mom, who I won’t write about in too much detail here — to respect her privacy. But I walked on a team for her sweet son. He was only 1 week older than Emmy.

And, when Emmy went into cardiac arrest earlier this year, this very special mom dropped everything to come to the hospital — even though she had lost her son in that very same hospital, on that very same floor, only 3 weeks prior. You don’t find people like that every day.

So now I’ve found two homes — one in the Williams syndrome community, and the other in the Congenital Heart Defect community.

And it’s become so clear that I NEED support. In the past, I would’ve been way too ashamed to join a support group. I would’ve been too afraid to show weakness. I would’ve shouted from the rooftops that “I can do this all by myself!”

Now I’ve grown wiser. When I’m in a support group, I learn from others who have walked this path before. I lean on others when I can’t stand on my own. And I hope that I give something in return — even if it’s just sharing our story.

I also love to laugh. And support groups can be a Cry Fest. Sometimes.

But, usually? Usually, we’re laughing.

Loud and Proud

LoudandProud

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

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

So I don’t have to tell anybody.

Nobody needs to know.

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

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

I saw it because I knew it.

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

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

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

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

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

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

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

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

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

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.

The Secret I Didn’t Know I Was Keeping

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

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

Shoes1

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.

Shoes2

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.

Shoes3

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.

Shoes4

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.

As Long As It’s Healthy

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.

She’s Home!

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

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

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.”