Party of Five

PartyofFive

We’re going to have a Party of Five in June! I’m excited, nervous, happy, and hungry.

I’m trying to be calm and zen during this pregnancy, and I feel like I’m doing a pretty good job so far. My pregnancies with both Charlotte and Emmy were roller coaster rides, so I’m doing my darnedest to take everything down a notch this time.

You know how, when you’re young, pregnancy seems like the easiest thing in the world? Here’s how I imagined it at first: You get pregnant. You glow. You eat a lot. You pat your growing belly and smile. You decorate the nursery. You go into labor. You deal with some pain at this point, but you’re immediately given your beautiful baby as a reward. And your life becomes perfect.

(I thought that not only was pregnancy easy, but that parenting was easy too. HAHAHA. I guess I’m an idealist…or naive. Probably naive.)

But, as life has gone along, I’ve seen all different sides of pregnancy. There are the glowingly perfect pregnancies, and I am thrilled for them…while also being slightly jealous. It sounds like most celebrities have perfect pregnancies, but maybe they’re only giving us one side to the story. I’ve also become very close with people who have tragically lost babies, who have had trouble getting pregnant, who have had very challenging pregnancies, and who have found out that their babies needed to have surgery right after mom gave birth.

I also have a very cool friend who delivered her baby BY HERSELF IN HER LIVINGROOM because the baby arrived so quickly. My friend wrapped her baby in her jeans and waited for the ambulance to arrive. This happened in 2012, not in 1970 or something. I will forever be impressed by this woman.

I didn’t expect any of these stories, though. I had one vision of pregnancy, and I thought everyone fell into that category–except maybe .1% of people.

I think it’s important to be sensitive to other people’s stories. I’ve learned this both in pregnancy and in having a daughter with special needs. I’m really drawn to people who are humble. It means a lot to me when someone says, “I haven’t experienced what you’ve gone through…but I get it.” If I had a magic wand, I would get rid of all the gloating in the world. I don’t think it gets us anywhere. I met a mom at a playground once who was trying to one-up me on all the things Charlotte wasn’t doing but that her daughter was doing. Yikes, does that rub me the wrong way! It’s not about putting your story in a better light. It’s about understanding that all of our stories are unique and important. We can learn a lot from others, and I feel so much love for the people in my life who have gone through so much.

So here’s my story: I found out that I had a bicornuate (“heart-shaped”) uterus shortly before I got pregnant with Charlotte in 2008. This sounded like the worst news ever, and I was beyond devastated. I’ve come to find out that it’s not as awful as it sounds. My uterus didn’t form completely when I was born, which is really bizarre because that means I have a birth defect that I didn’t even know about until I set out to have kids! My uterus stopped short of the upside down triangle and, instead, formed into a heart. I know the heart sounds lovely, and so many of my friends tried to put a positive spin on it. But I was REALLY mad at my uterus for a while. I felt like it deceived me.

Of course, I immediately Googled “bicornuate uterus” and devoured all the horror stories. (I’m good at that. I tend to skim over the good stories to get to the real doozies.) The biggest problem is that I could go into pre-term labor.

So for my entire pregnancy with Charlotte, I was a mess. I let my mind go to all the bad places it could go, and I white-knucked the entire pregnancy. Because of the bicornuate uterus, I’m considered “high risk” so I also had a lot of doctors’ appointments and ultrasounds, which just made me more nervous.

You get the picture. I suffered mentally for 9 months. PHYSICALLY, I was doing pretty well! I had some minor issues that had nothing to do with my bicornuate uterus and were all resolved (like the time I fell flat on my stomach at 9 months pregnant…). But I wasn’t listening to my body. My body was doing great, and my mind was a mess. The two things were completely out of sync. It’s funny how my mind can take a life all on its own with zero regard to what is ACTUALLY going on with my body.

All the bad things I had read about through my endless Google searches never happened. Charlotte was born via C-section at 39 weeks, and she was happy as a clam! Such a good baby.

Ok, so you would think that my lesson would be: Don’t let your mind run away without you. Listen to your body. Do things differently next time. CALM DOWN.

Here we go again. I got pregnant with Emmy in 2010, and I started to follow my own advice. Caaaaaalm down. Don’t worry. Everything is going to be fiiiiiine.

I was doing awesome until 7 weeks along, when I had heavy bleeding–the likes of which you would not believe. My mind immediately went back to panic mode. We had an ultrasound that showed Emmy was fine, but I was a nervous wreck for the rest of the pregnancy. I couldn’t get back to that zen place again. Also, Emmy was always measuring small. We’ve come to find out that this is pretty common for Williams syndrome, but we had no idea that she had Williams syndrome until 5 weeks after she was born. So the fact that she kept measuring small seemed odd to me and, again, made me nervous. I was still considered high risk and had all the doctors’ appointments and ultrasounds that you can imagine, which heightened my nerves even more.

But, again, for the majority of my pregnancy, I was fine physically. It was the mental aspect that took a toll on me–again! Even though I swore it wouldn’t.

Emmy was born via C-section at 39 weeks. She had a lot of problems right out of the gate and had to go to the NICU–and then of course we got the diagnosis of Williams syndrome a few weeks later. But we didn’t know about any of this during pregnancy, and I could’ve saved myself a lot of stress while I was pregnant if I just focused on how my body was feeling instead of paying attention to my over-active, always-working mind.

So here we are with Baby #3–a boy! And I have a whole HOST of problems. But I think I have finally learned my lesson. I refuse to let my mind get away from me this time.

The first problem is that I have a thin window on my uterus. Basically, this means that part of my uterus has been deemed “paper thin” and, if I were to go into labor, my uterus could rupture. My second problem is that, because of our history with Emmy, we have to do more in-depth ultrasounds to make sure that there are no heart issues. No one thinks this baby has Williams syndrome (though it would be pretty amazing, considering it’s a 1 in 10,000 completely random event). We’re no more likely to have another baby with WS than any couple would be to have a first baby with WS. But when one of your babies has a genetic issue, they do want to look closely to make there there is nothing else that we need to be aware of. (For instance, if the baby had a Congenital Heart Defect, which is a 1 in 100 statistic, we would have to schedule surgery for after the birth etc.) My third problem is that I’m technically still at risk for pre-term labor because of my bicornuate uterus, so I have to get checked more often than your average patient. And, fourth, this baby has a kidney issue, which is apparently common in boys and nothing to worry about–unless it’s something to worry about…and we won’t know that until we get further along.

Given my history, you’d think I would be freaking out, particularly about the kidney issue. But here’s what I’m doing this time. I’m staying grounded. I’m NOT Googling. I absolutely refuse to Google. I won’t go searching for all the horror stories like in the past.

Sure, I have my moments of worry and panic, but I’m able to bring myself back down again.

How am I getting there? Well, I’m listening to my body. I feel…fat. 🙂 But good and happy and comfortable and calm. I’m looking forward to spring. I’m thinking of all the things I want to do with my girls to enjoy the last memories of the Party of Four. I love seeing Charlotte and Emmy together. Their sisterly bond has gotten so much tighter. It makes me SO happy.

I want to capture this moment of zen and carry it through to the delivery in June. I want to trust my body, which has proven itself before. I want my body and my mind to be in sync throughout this pregnancy. I want to enjoy and remember many moments throughout this pregnancy. And, this time, I want to savor that pregnancy glow.

Something to Watch this Weekend

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Photo credit: http://www.missyoucandoit.com

If you have HBO On Demand, do yourself a favor and watch a documentary that will capture your attention and melt your heart. If you click on HBO and go to “Documentaries” then “Feature Films,” you’ll find a movie called Miss You Can Do It.

You can watch the trailer here: Miss You Can Do It Trailer

I’m not usually into movies about pageants, and when my husband and I sat down to watch it, I thought, “I hope this isn’t too pageant-y…or too depressing…” Usually, when we do video date night (because you know we’re not going out to the movies), I try and find something funny and light-hearted.

So, for this one, I took a chance. And, yes, I bawled my eyes out–but in a good way! I highly recommend it, for parents of typical children and those with special needs.

I wish that I had been more interested in special needs before I had a child with special needs. Does that sound strange? I feel like I was incredibly closed off from that world, and now I realize that I could’ve gotten involved a long time ago.

If my daughter didn’t have special needs, would I have watched that awesome pageant documentary?

Or this one? Monica and David

Or this one? Best Kept Secret

I can tell you the answer. I probably wouldn’t have watched any of them. I don’t think that makes me a bad person. I think we’re drawn to what we know. And I didn’t know ANYTHING about special needs until July 2011, when Emmy was born.

I know that Oprah loves this quote by Maya Angelou: “When you know better, you do better.”

In my case, I think that it would be: When you know more, you do more.

I’ve stretched my boundaries because I had to. But I’m so glad that I had to because I never would’ve seen what was on the other side.

Over the past few years, I’ve met a fair amount of people who have dedicated themselves to special needs work without having a child, or sister, or brother with special needs. They just did. For various reasons, or perhaps for no reason at all, they wanted to help. I am always touched by those stories. I think I’ve asked almost all of our Early Intervention therapists, “So how did you get into this?” Where did that all start? One therapist told me that, as a teenager, she was helping a friend of the family with her autistic child. I can’t tell you how much that impacted me because I thought back to what I was doing as a teenager and, while I was a good girl :), I wasn’t involved in anything meaningful on that level. I didn’t stretch much out of my comfort zone. One of my goals is to open my children up to a world beyond what they can see. There are many people out there, each with his/her own story to tell. It makes me feel good to finally open my eyes to all of those stories, not just my own.

Pint-Sized Professor

PintSizedProfessor

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

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

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

“What does the word ‘theme’ mean?”

“Who are all of the characters in Batman?”

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

WOAH!

And this one was my absolute favorite:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

But my pint-sized professor wanted an answer.

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

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

ARG. ARG. ARG.

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

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

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

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

Ok, now for another topic —

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

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

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

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

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

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.

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.

By This Time Tomorrow

ByThisTimeTomorrow

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

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

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

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

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

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

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

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

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

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

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

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

I hope Emmy’s surgery and recovery go beautifully.

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

One Week from Today

OneWeekfromToday

In exactly one week, Emmy will have heart surgery. I’m still in denial. I keep waiting for the phone call where a doctor says, “Oh my goodness, I am so sorry for all the confusion! Emmy’s numbers were showing up backwards! Whoopsie.”

Or, when we go in for her pre-op on Monday, I’m expecting a nurse to say, “I have good news! The narrowing in Emmy’s aorta has completely disappeared. This kid is healthy as horse. Take her home, and we’ll see you…never!”

It probably won’t feel real until Emmy gets wheeled into the operating room and I’m left behind to obsessively stare at the clock.

There’s a chance that she might need a blood transfusion during or after surgery and, because we have the same blood type, I was able to give a directed donation earlier this week. Dan came with me and donated to the general population because he and Emmy aren’t a match.

The woman who worked at the blood bank was so unbelievably kind as she took down my information. I hadn’t told her who I was donating to because I didn’t want to cry, so I just acted nonchalant.

As she transferred my information onto the form for Emmy’s surgery, she saw her birthdate–July 2, 2011.

The woman looked back at me and, with tenderness in her voice said, “This is for a small child.”

I steeled my jaw, intent on not breaking down, and said, “It’s for my daughter.”

She was so kind and offered comforting words. As I was giving blood, she asked lots of questions about Emmy. It made me feel good to have support, even from someone I’d never met before.

After Dan and I gave blood, we sat down at the small snack table and made conversation. We dutifully drank our juice and ate salty pretzels.

All of a sudden, Dan’s face turned grey. His breathing got shallow, and his eyes weren’t focusing.

“Are you ok?” I asked, stunned.

“I’m…having…trouble…breathing,” he managed to get out.

I jumped up, still woozy from having just given blood, and hobbled over to the kind woman. I choked out, “My husband…”

She called out to her coworkers, and a swarm of people descended on him, putting ice packs on his neck and keeping his head down.

“This can’t be happening,” I thought, as I stood back from the crowd. My mind flashed to Emmy’s surgery. “This can’t be happening.”

The kind woman who took my blood looked over at my panicked face and said, “He’s going to be just fine.”

I didn’t believe her.

They put Dan on a stretcher with his feet in the air as I nervously looked on. It took him a solid fifteen minutes to regain his color. Finally, he climbed off the stretcher and came to sit back down with me.

“That was really scary,” I said.

“I don’t know what happened,” he replied.

Dan is a strong guy, which is why he is my rock. To see my rock go down left me feeling completely helpless.

We’ve had a stressful week trying to get our ducks in a row before surgery, and I think the weight of it all has taken its toll. As nervous as I am for surgery, I just want to get it over with so we can finally exhale.

Feeling the Fear

Feelingthefear

I am living in a place of fear right now. I have a friend whose child is in the hospital recovering from heart surgery. My own child is scheduled for heart surgery in a month. My friend, Erin, posted the most heart-wrenching story on her blog, which has just rocked me to my core: http://edivaput.blogspot.com/2013/04/when-it-just-isnt-fair.html

And then of course there is the horrific event coming out of Boston and that sweet boy’s picture on Facebook holding up a “Peace” poster.

I am living in the middle of fear. I must admit that a large part of me feels comfortable in a place of fear. My first reaction to any uncertain circumstance is usually fear, so this emotion feels spot on.

But I am very much aware of the anxiety in my chest, the constant nerves; the guzzling of caffeine which only makes it worse. Recently, I’ve found a new way to address fear which is to eat. I take those Lindor truffles that are only 73 calories each…and I have 10…in an hour. I fantasize about the rosemary fries at Smashburger. I eat slice after slice after slice of cheddar cheese.

Finally, I confided in a wise friend who replied that I was feeding the fear to make it go away.

I hadn’t even realized it. Instead of feeling the fear, I was feeding the fear.

The problem with that (besides the tight pants) is that even though I’m stuffing, I’m still feeling everything under the surface. The emotions are still there, bubbling up. They haven’t gone away.

Now that I realize what I’m doing, I can look at myself objectively.

“Self, why are you doing that?” I ask.

“Self, you know exactly why you’re doing that,” I answer. “You don’t want to feel.”

But, self, it’s natural to feel. It’s completely human to feel afraid and sad and upset and angry. And then it’s beautifully human to feel support and connection and love and generosity. And then it’s entirely human to feel hope and bliss and joy. It’s normal to feel all of it.

I don’t think that living in a place of fear is a good place for me. But I recognize it and look at it objectively and reach out to others and hope that there will be great joy on the other side.

I May Throw Up

Imightthrowup

We got a phone call with a date for Emmy’s heart surgery. It’s a month away.

I was surprised that I didn’t cry. I couldn’t cry. I even tried.

I just felt sick.

The phone call came yesterday and, for the past 24 hours, I’ve felt as though I’m going to vomit.

The threat of heart surgery has been dangling over our heads since Emmy was born. She has narrowing in her aorta. As it gets narrower, it gets more dangerous because the heart has to work harder to pump the blood through.

Now, as her numbers keep rising, it’s time.

I know other families who have been through this. I have met so many incredibly supportive people–both in the Williams syndrome community and in the Congenital Heart Defect community. I lean on them. I also lean on my other friends and family who haven’t been through this before but who feel everything I’m experiencing as though they were walking in my shoes.

I’ve realized this about myself: I’m someone who needs support.

I didn’t think that was the case for most of my life. I didn’t reach outwards. I turned inwards. And I heralded my independence as something that was precious. In the past, I didn’t want to show weakness or vulnerability. Why would I lean on others? What if they weren’t there for me when I really needed them? I didn’t want to take that risk, so I didn’t reach out.

But I have been schooled in the lesson of support. For me, there is no other way. I know I can’t do this alone.

And now, as I finally let the tears flow freely and move past that awful feeling of wanting to vomit, I am so incredibly grateful for the people I know.