Monthly Archives: March 2014

Blogiversary

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Somehow it’s the 1 year anniversary of my blog…which basically means that TIME FLIES! My first post was about green bagels on St. Paddy’s Day  (Green Bagel Morning), which we dutifully ate again this year.

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I’ve really enjoyed blogging over the past year. I’ve loved the connections that I’ve made with people, and this blog REALLY REALLY helped me out when Emmy went into cardiac arrest after heart surgery last May (You can do it, Emmy!!!). I never in a billion years thought that I would be blogging while my daughter was on life support. It seems almost trivial. Blogging while your kid is on life support?? What??  I’m not even that much of a social media person, so it doesn’t seem to fit my character.

But oh-my-gosh, did it help!!! The messages of encouragement kept me going. And the support was incredible. I felt as though we were lifted through that entire experience on the shoulders of others. I didn’t feel like I was going through it alone.

I still get rattled when I look back on my blog posts during that time. It can bring me right back to that hospital room in a split second. It’s surreal to be so far removed from that experience now–physically removed but not mentally… Never mentally.

I have two favorite posts from the past year. I mulled over These Are The Shoes for a LONG time before I wrote it. Every time I opened Emmy’s drawer, those shoes would stare at me. And every time I thought, “I have to write about this feeling to get it out of me.” I’ve mentioned a few times that writing is like therapy for me. When something eats away at me, it’s all I can think about. And then once I get it down on paper, the immediate relief is unbelievable. Seeing those shoes every day really affected me and then, once I wrote about it, I was able to let it go. Amazingly, the shoes don’t bother me anymore.

My other favorite post is In Love. I LOVE that picture of Emmy. She looks like she’s shining from the inside out. That post represents a divide for me. I felt as though I let Williams syndrome come between Emmy and me for a long time. I was very aware of the fact that she has Williams syndrome. I thought about the implications a lot, and it kept me at a distance from her. This was totally unconscious on my part, but it happened nonetheless. We went through hell during her heart surgery and recovery and, while I would never want to go through something like that ever again, it helped me realize that Emmy is my daughter first and foremost. I no longer saw her as “my daughter, but let’s not forget that she has Williams syndrome.” I saw her as my daughter. Period. End of story.

And even though this blog is called Williams Syndrome Smile, my older daughter Charlotte, and husband Dan, (and the new baby soon!) have all played a significant role as well. I think this is more about life in general. Parenting is a minefield, I tell you. Having a child with special needs might color some of my experiences in a different way, but 99% of the time, I’m doing the normal things that every parent does. My #1 goal in life is to not screw up my kids…and yet I can guarantee that I’m already doing something wrong. (And it’s probably the thing that I think I’m actually doing right!! That’s the irony of it all.)

Thank you so much for reading and sharing, everyone!! I’m looking forward to Year #2.

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Party of Five

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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.