Tag Archives: Friendship

Here We Go

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I’ve been wanting to post about this for a while, but I’m so stinking depressed about it that it’s hard to find the words. I also have been trying, unsuccessfully, to put it out of my mind and not obsess. (But I’ve been obsessing.)

It looks like Theo will have to go to the hospital for a bronchoscopy on November 10. When Theo was about 5 months old, I noticed a wheezing sound when he breathes. At the time, it was diagnosed as laryngomalacia, which is basically a floppy larynx and no big deal. It happens to some kids and, as they get older, the problem resolves itself. Sure enough, when Theo was about 8 months old, it seemed to go away. I didn’t hear the wheezing anymore, and the doctor confirmed that it had resolved.

Then this past August, when he was 14 months old, he developed a much different sound when he breathes. It’s quite loud, and it sounds like he has mucus in his throat — like a gurgling or purring. At first, we weren’t worried. We figured it was a cold. Then it didn’t go away. And it got louder. We’ve seen several Ear, Nose, and Throat doctors. We treated him for allergies (both seasonal and food), asthma, and reflux. None of those treatments had any impact on the sound. Plus, one of the treatments involved medicine that seemed to make everything worse. He had so much mucus and saliva in his mouth that he couldn’t even swallow.

So here we are. Theo is 16 months old, and the sound is as loud as ever. Furthermore, he has started occasionally choking on his food and, when he coughs, it sounds as though he’s fighting a lot of mucus. (Although this mucus has never come up.) But the Ear, Nose, and Throat doctor confirmed it was there by looking down his throat.

Well, now the ENT has to look further to get to the root of the problem, and the only way he can do that is through a bronchoscopy, which means we have to take Theo to the hospital and put him to sleep with anesthesia. Which reminds me of the last time we put one of our children to sleep with anesthesia, and all hell broke loose. (I can’t even bear to go back and look at the posts right now to link to them. But, in May 2013, Emmy had heart surgery and went into cardiac arrest afterwards.)

I’ve been trying to avoid the bronchoscopy. I’ve been trying so hard to solve this problem without any invasive procedures. But it doesn’t seem like that’s going to happen. My amateurish investigative work isn’t getting us anywhere.

The two prevailing theories right now are that (1) Theo might have scarring in his throat or a narrowing in his airway from when he was intubated in the NICU (2) Theo may have a congenital anomaly called a “vascular ring.” Both are pretty hardcore.

Keep in mind that Theo seems fine. He’s growing nicely. He’s talking and laughing and dancing and having fun. He has all the energy in the world, and he actually doesn’t seem at all bothered by this throat issue. Even when he chokes or coughs, he just keeps going. (The rest of us practically have a heart attack every time…)

So what can I say? It stinks. I’m trying my darndest to be positive. But it stinks. And I’m super bummed that we have to go down this road. I just want everything to be all sunshine and roses all the time, you know?? Especially when it comes to my kids.

Well, our pre-op appointment is on November 3.

So here we go…

A Story About Sisters

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Charlotte wrote a “How To” story in school. The topic she chose was “How to Help Your Sister.” For her dedication in the beginning, she wrote, “I dedicate this book to Mommy because my Mommy taught me how to help my sister.” She wrote about helping her sister down the stairs, helping her get dressed, and helping her brush her hair.

My first thought was: This is the sweetest thing I have ever seen in the history of the world!

My second thought was: Have I put too much of a burden on Charlotte?

I felt the #1 Mom feeling, which is guilt. Am I not doing this right? My original intent was that I didn’t want Charlotte to feel like she always has to help Emmy because I didn’t want her to resent her sister later in life. (Though someone commented on my blog once that she, as an adult, loves helping her sister with Williams syndrome and that she would do anything for her.)

I just don’t want Charlotte to look back on her life and say, “You know, my mom really screwed things up because she made me help my sister too much, and now I have the following issues…”

But then I thought…

Wait a minute. I helped my own sister! I was always looking out for her. I’m sure my sister felt like she had 3 parents because I was always putting my nose into everything. I remember being in a grocery store with my mom and my sister and, while my mom put in her order at the deli counter, I would chase my sister around the grocery store and call back over my shoulder, “You need to watch her!!” Of course, my mom had an eye on her the whole time, but she found it hilarious that I played the role of guardian (while chastising her for it…).

My sister and I recently found some old videotapes of my 13th birthday party, and we had so much fun laughing at ourselves. The grainy footage showed the party in my house with music blasting. Our living room was crowded with friends and even a boy that I liked. But while I was surrounded by people my own age, I danced with my 7 year old sister for hours. There we were in the middle of the circle–spinning around and laughing. We both commented on it. “Wow, I basically ignored everyone else and spent the party with you!”

Growing up, I included my sister in everything. “This is my little sister!” I would call out to anyone who would listen. I always had a protective arm around her, and I loved doling out advice. When I finally got my driver’s license, we continued to spend all of our free time together–out and about. And when I got to college, I brought my little sister to parties and watched her like a hawk (reminiscent of days in the grocery store as kids).

I don’t remember if I helped her down stairs or if I brushed her hair, like Charlotte does with Emmy. But I know that I’ve helped my sister in other ways–just as she has helped me. It’s always been a give and take. (My little sister has even called a boy on my behalf, to ask him to a dance. I was 15 and she was 9. At the time, my shyness was beyond embarrassing. Now, I can laugh about it.)

With Charlotte and Emmy, I see that give and take. Some of Emmy’s greatest strengths come from her reliable company. If Charlotte needs a hug, Emmy is right there. When Charlotte needs a laugh, Emmy is happy to provide it. When we moved to a new town a few months ago and didn’t know anybody, Emmy stepped into the role of “steadfast companion” to Charlotte. They spent all of their free time together.

The other day, I found one of Emmy’s books in Charlotte’s room. I asked, “Did Emmy leave this here?” and Charlotte responded by filling me in on their morning routine.

Every morning, Emmy wakes up first. She grabs a book from her nightstand and walks over to Charlotte’s room. She knocks softly on the door and enters. Charlotte is still in bed–sometimes sleeping. The two girls don’t say a word. Emmy sits on the floor of Charlotte’s room with her book and leafs through it, waiting for her sister to get out of bed.

I said, “You guys don’t talk at all?”

Charlotte replied, “No. She just likes to be in here with me.”

Their bond is strong. There’s a give and take. For now, I think it’s equal. What role Charlotte will take on in the future remains to be seen. I don’t want her to feel burdened, and I don’t want her to resent her sister. But for everything I’ve done for my sister and for all the times I’ve been there for her, I feel zero burden or resentment. Yes, the circumstances are different. But from what I see in Charlotte and Emmy, that special bond is exactly the same.

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The Kindness of Others

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Yesterday, as Emmy was working her way down the steps at school, a parent held out her hand.

“Want some help?”

Emmy gladly accepted the hand, and the two of them walked slowly down the steps together. I don’t know this woman. I’ve seen her around, but we hadn’t officially met until yesterday. Yet she saw that Emmy was a bit slower on the steps, and she was eager to extend a hand.

And when I came to pick up Emmy at school the other day, a little girl saw me and said, “Emmy, your mom is here!” But she didn’t stop there. She put a hand on Emmy’s back and gently guided her through the sea of children. This little girl of about four years old led my daughter to me.

Because my daughter has special needs, I see something that others may not see. I see people who show a level of kindness that goes above and beyond what is expected.

Sure, we all say “hi” to each other as we go about the hustle-and-bustle of our daily lives. We offer a quick smile or a wave. We hold the door for each other. We say “Excuse me” and “Oops. I’m sorry.” We’re in our own little worlds. It’s how we live, and it’s what we’re used to.

But now I also see the people who drop everything to help someone with special needs. When that happens, there’s an incredible kindness that comes through. And there’s a softening. Our crisp, sharp world becomes fuzzy around the edges.

As I stood waiting for Emmy to work her way down the steps holding a woman’s hand…

And as I stood waiting for a little girl to guide her though the crowd…

Time stood still. Everything became softer. 

I wonder about people like this. Where does this kindness come from? Do they have a sibling with special needs? Do they work with people who have special needs? Did their parents teach them to be kind to people with special needs? Or are they just born this way?

Before Emmy was diagnosed, I didn’t have this trait. Of course, I was perfectly pleasant towards people with special needs. It’s not like I was cruel or anything. But I didn’t have the stop-everything-and-help trait. I didn’t know anyone with special needs and, actually, I didn’t think much about it. I was very much in my own little world.

I’d say most people are just like I was. They offer Emmy a quick smile. Or they might look quizzically at her, perhaps thinking, “What’s wrong?” Or they don’t even notice her at all.

But then there are these people who stop EVERYTHING and extend a hand. This woman’s own daughter was at the bottom of the stairs already. She could have easily raced down the stairs, offered me a brisk “Hello,” and marched towards her car — already thinking about what to make for dinner. I wouldn’t have faulted her a bit. It’s what everyone does. Hey, I’m busy too, so I get it!

But, rather, she stopped. And she extended a hand.

When I see the kindness come through in children is when it really gets me choked up. When I see kids holding Emmy’s hand to help her along. Or when I see kids try and pick her up to help put her on a tricycle. Or even when kids stop to say, “Hi Emmy!” Those things make her day. And they make mine too. It makes me feel like we’re going positive places in this world. I applaud the parents who are able to teach this kindness to their children. I think it will make them better people, for sure.

I already see how Charlotte has blossomed because of her sister. She is so kind and so helpful. When she takes Emmy’s hand, that softness happens. Just writing about it, I can actually feel it.

People with special needs deserve this kindness. They don’t deserve hurtful words and teasing. I see how Emmy has completely changed my life. Her incredible spirit has softened me. And she has shown me how to really stop and see these little moments of softness in an otherwise fast-paced world.

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.

Loud and Proud

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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.

We Have Each Other

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I’ve been at a loss for words this week. My friend has experienced a tragic loss that defies words and explanations.

There are many thoughts that have gone through my mind over the past few days. Why do bad things happen to good people? How can life be so fragile? Where are the miracles that I’ve dreamed about?

I’ve been thinking, thinking, thinking. And then something so strong came into my head, as if I didn’t even think it myself: “We have each other.”

Even if my questions do not have answers, we are standing strong together. Our hugs have been so tight. We’ve felt other people’s tears against our own cheeks. We’ve grasped hands and rubbed backs. We’ve leaned on one another.

We can’t predict the future, but there is comfort in knowing that we can rely on others to help us get through the tough times. These personal connections are essential.

This is what I know: It is my honor to support my friends. Yesterday, today, and tomorrow. We have each other.