Why I Stopped Apologizing for My Child

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Apologizing

A while back, I was looking to find a daycare that Emmy could attend a couple days a week. Before I started my journey as a mom, I assumed that my kids wouldn’t go to daycare because I had images of constantly-runny noses, unchanged diapers, and bored staff. Woah, was I wrong about that one! I’ve been able to find daycares that are run more like schools, so my kids are learning, having wonderful social interactions, and making cool art projects. They’ve also become very close with their teachers, and I love to see those special bonds forming. So I am pro-daycare, if you can find the right place.

This happened before I found the right place…

Emmy was too young to attend Charlotte’s daycare, which we’ve been very happy with, so I needed to find a place that would take younger children. And I needed to decide when I would drop the words “Williams syndrome.”

Here’s the thing. Not all parents reveal that their child has a diagnosis. They don’t want a label, they’re worried about their child getting into the school, the don’t want their child treated any differently, etc. I empathize with all of these concerns, and I’ve thought about the same things myself.

In my case, though, I knew I had to tell the school about Williams syndrome. First, I knew that our pediatrician would have to fill out a Universal Health Record before Emmy started school, and that it would say “congenital heart defect due to Williams syndrome.” So the cat would be out of the bag at some point. Second, I figured that the teachers would pick up on her delay and ask me about it. I didn’t want to have to fib my way out of that one. Third, my memory is not great. I would never have remembered who I told or who I didn’t. That’s part of the reason I don’t keep her diagnosis a secret from anyone. I would literally have to carry around a notebook and jot down who I told and who I didn’t — and hope that those people never run into each other!

Ok, so I knew I was going to tell. I just didn’t know when or how.

I called the first school and asked if they had room in their program for her age group. The Director said, “Yes. Come on over.”

I hopped in the car and mulled over how I would tell him about Emmy. When I arrived, he offered me a seat in front of his desk. All I could think was: Williams syndrome Williams syndrome Williams syndrome. He told me a little about the program. I nodded and smiled. Williams syndrome Williams syndrome Williams syndrome.

Finally, he stopped talking and asked me about Emmy. He wanted to know if she was either cruising or walking because that would determine her classroom. They had room in both. At this point, Emmy was barely cruising. She was holding onto furniture, but she wasn’t cruising with ease. I knew, though, that if I didn’t talk her up, he would put her in the infant class with the kids who weren’t walking at all. I didn’t think that holding her back, in that sense, was best for her development. She needed to learn from the kids who were already walking. She was also closer developmentally to her own age group than to an infant.

So I took a deep breath and confidently said, “Yes, she’s cruising. She’s been a little slower in that respect because she has Williams syndrome.”

Cat’s out of the bag!

I swear his eyes nearly popped out of his head.

“And what’s that?” he asked.

I told him about Williams syndrome and, in doing so, I realized that I was apologizing for my child. I was emphasizing that she was practically typical and that Williams syndrome was no big deal. Honestly, I felt gross. I was sugar-coating. I wasn’t being real, and I wasn’t being true to my child. When I saw the look of concern on his face, I just kept laying it on thick — how Williams syndrome would be no problem at all. I didn’t dare say that she might need help on the playground or with art projects. I didn’t mention how great it would be if her Early Intervention therapists could come and work with her. I acted as if she would be just fine with no help whatsoever. And then I sat back and waited for his response.

He looked incredibly uncomfortable. He didn’t embrace the situation. Instead, he probably heard nothing I said after the word syndrome. He nervously said, “Ok, let me go check back in with those numbers and make sure that we have room in the cruising class.”

He walked away and came back with a post-it note that had a number on it.

“Turns out we’re at our limit!” he proclaimed. “I thought we had room, but I was wrong. But I’ll certainly give you a call if anything opens up.”

I’m sure he was lying. On the phone, they had room. In person, after my revelation, they were suddenly booked.

I got back in the car, feeling sick, and drove to the next daycare. I debated not revealing her Williams syndrome this time, but I knew I had to for all the reasons I mentioned above.

This time, I toured the school first and then sat down with the Director who said they had one more slot. Great! She couldn’t back out on me now.

I then told her that Emmy has Williams syndrome and, to my horror, I fell back into that sickening apologetic tone. At one point I even said, “You wouldn’t even know there was anything wrong with her.”

UGH. OUCH. I couldn’t believe those words came out of my mouth.

The Director smiled sweetly and replied, “But there isn’t anything wrong with her.”

I felt awful. Here was a stranger who needed to tell me that there wasn’t anything wrong with my child. But talking to her made me feel like I was getting somewhere. I felt as though she understood and was ready to accept Emmy with open arms.

She then asked if Emmy had any medical issues. I said that she has a heart problem due to Williams syndrome but, here we go again, it’s no big deal.

Heart problem?? The air left the room. Her attitude of acceptance turned into a brick wall. This sounded like a liability.

“Welllll,” she started. “You know I’ll have to check with Human Resources about that.”

People have since told me that it’s illegal to not accept someone with a heart condition, but I haven’t done enough research to confirm that. All I know is that, when I called her later to see if she had checked with Human Resources, she said she was mistaken and that they actually didn’t have room for Emmy. The class was full.

So the woman who just told me that there was nothing wrong with my daughter was able to find something wrong. Thanks for the life lesson, lady.

I felt disgusted. I had basically sold my soul to explain away Williams syndrome, and both places rejected me. I felt as if I weren’t giving Emmy the credit she deserves. Instead of proudly embracing what was special about her, I was apologizing for her and explaining her differences away. And they didn’t take her anyway! All of my sugar-coating got me nowhere.

So I decided to speak honestly and openly about Williams syndrome. It is harder for her to do things. But, damn, does she try HARD at everything she does. She perseveres like no one else I’ve seen. And her sweet personality is just such a gift. I’m so proud of this girl.

Just as I resigned myself to not finding a place that would take her, there was a phone call from another school that we had been trying hard to get into. We had been on the waiting list for a while. They were packed but found a spot for Emmy a few days a week. The Director was so welcoming and, when I talked openly about Williams syndrome, I didn’t scare her away in the least. She said that she couldn’t wait to meet Emmy and that they were so happy to have her. I asked if we could have some of her Early Intervention therapists there to help her, and she responded, “Of course!” She didn’t freak out about Emmy’s heart or about her lack of walking. She wanted to put Emmy in with her age group, which I whole-heartedly agreed with. It felt good, finally, to be heard and understood.

Thinking back on my “apologies” for Emmy makes me feel icky to this day. Hey, this diagnosis isn’t her fault! She did absolutely nothing wrong. Through a completely random genetic event, she was made this way. And, boy, do I love everything about her.

So this whole experience, while stomach-churning in parts, gives me the confidence to say:

I am no longer apologizing for the special needs of my very special child. 

Love you, kiddo.

January

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I’m having an interesting time with January so far. I’ve been going nonstop from Halloween through the end of 2013 — holidays, snow days, presents, clutter cleaning, cards, lights, tree, the ambition to do “holiday related” activities; the ball drop at midnight. It was a big rush to New Years.

The self care that I’ve written about before got pushed way to the back burner. I just put my head down and GOT THINGS DONE. Writing is very therapeutic for me, but even that  went straight to the bottom of the list. I actually felt guilty glancing over at my stack of books about writing. I’ve been working on a memoir about the past two years and, if it gets finished before 2045, it will be a miracle.

So, with all the craziness of October-December, I slid into January needing a complete recharge. It was hard for me to get back into writing right off the bat, but I cleaned out the clutter in the study, which is always a precursor to SOMETHING happening. And then I sat down with a few writer friends last week and, wow, did that feel good. It’s funny how some of us completely ignored our writing during the holidays, while others were actually productive. The productivity of others helped ignite that fire within me again. The words of encouragement from friends “You have to finish this book” also moved me forward.

But there’s something else stopping me too. When I write about the past two years, I want so badly to capture how I initially felt about Emmy’s diagnosis, how that feeling sat with me for a good six months and was only chipped away at little by little, and how that feeling is so far from what I feel today. As I move away from that feeling, it’s harder for me to go back where. Was I really devastated by this diagnosis? Really?? It’s hard for me to believe looking at the sweet, funny, good-natured, lovely daughter that Emmy is today. When we sit down at the breakfast table every morning, she gives the biggest, brightest smile and announces what she’s eating. I’ve never seen anyone that happy in the morning–ever! “Yogurt!” she declares, holding it up for me to see. Was I really upset for 6 months about Williams syndrome? Really?? It’s hard for me to even believe it myself.

In order to write about it accurately, I have to go back there in my mind. I somehow have to put aside the smiling cutie pie that I see in front of me and sink back into that mindset. Because even though I’ve moved on from that early time and changed my views on Williams syndrome by 180 degrees, I still feel like the story is inside of me. It’s just sitting there, waiting to come out. It’s been sitting there for 2 years now. I’ve changed, but the story is still heavy on my mind.

It’s the story of how I thought I would never smile again. It’s the story of how I bought every book I could find about having a child with special needs and read them through tears thinking, Is this really happening to me? It’s the story of how I thought my marriage was going to crumble because that’s just what happens, right? And it’s the story about how it was so hard to connect with Emmy for 6 months because I felt as if she were underwater. There was a barrier between my daughter and me and, during one Early Intervention meeting, I broke down sobbing and said, “I feel like she’s underwater. I feel like there’s a veil there, and I can’t break through. I don’t know how to connect with my own daughter.”

Those feelings have completely dissipated now, and the child that was once “underwater” now runs into my arms and says “Huggie!” But that story is still sitting there, and I remember it well.

The thing about writing memoir, though, is that it can hurt to go back there. If I were writing fiction, I don’t think I’d end up in tears just thinking about Chapter 2. And because I don’t want to feel that hurt again, it keeps me from sitting down and writing. Though if I don’t write, I still always think about writing, and that just drive me nuts…

I haven’t written fiction in a long time. I also haven’t read fiction in a long time (except for my friends’ pieces), though I’m starting to get back into it now. Memoir and personal essays really speak to me. A couple years ago, I wrote a very painful, true piece for a writing group. It was difficult to write but, boy, did it feel good to get it out. At the end of the night, we were all filing out into the parking lot, and this woman held me back to say that my piece really touched her because it was so raw and it brought her right back to things she’d experienced as well. That’s when I’m writing at my best–when I can go to that place and not sugarcoat. To me, the words don’t matter as much as the feeling behind it. I can always go back and change the words. But I can only revisit those feelings so many times before I can’t go there anymore. Or, in Emmy’s case, before I become too far removed from those early months and completely forget the pain that I was in.

Emmy will be 3 in July. Can I finish this memoir before then? Before I completely and utterly forget what it was like when my daughter was “underwater”? One of my writing friends suggested keeping a daily word count. That way I won’t get bogged down in revising Chapter 1 (as I’ve already done 100 times…). I just need to keep moving forward–get the story off my chest. Get it DOWN on paper. And, no matter where it goes from there, I will have gotten it out of me. For me, that is therapy.

Tradition

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Tradition

My husband is really into tradition. I mean, REALLY into tradition. Actually, the very first post I wrote was about how he buys green bagels every St. Patty’s Day: https://williamssyndromesmile.com/2013/03/17/green-bagel-morning/

He doesn’t just keep old traditions alive, though. He also spontaneously creates new ones! I was heading home with the kids when he called to say that he put the holiday lights on the house and wanted Charlotte and Emmy to turn them on when we arrived.

“It will be a tradition!” he declared.

I love that Dan doesn’t live by the same imaginary rule book that I have in my head. My rule book says that I preserve the traditions that were handed down to me, but I don’t create new ones. Who am I to create a tradition? Those things were carefully thought out by my ancestors! But Dan has no qualms about creating a tradition TODAY.

And I’m ashamed to say that I kind of brush them off (sorry, babe). Traditions are not as weighty for me. I have a few precious traditions surrounding Christmas that remind me of childhood but, other than those, I don’t really think about traditions for the rest of the year.

Over the weekend, I found myself really appreciating the fact that Dan keeps traditions alive when we got the tree and decorated it. And as the kids put ornaments on the tree, I was so aware of how this tradition forces you to be present. It forces you to put down the phone, look at every ornament, tell stories about the ornaments, find the perfect branch, take photos to capture the moment, admire how your daughter is so careful with the precious ornaments when just last year she would’ve been the opposite, notice how your daughter carefully stands on the stool to reach the top branches, and realize how much taller she is than the year before. When you’re decorating the tree, you are forced to be in the moment.

How many times do I swear I’ll appreciate every moment–and then still let all of them pass me by?

And how many times do I swear I will PUT DOWN MY PHONE…and then will see it calling to me from the table?

“Put it down, woman!” I want to shout. “Put it down!” Because when I’m looking at my phone, I am anywhere but in the moment.

I think it doesn’t matter so much when I’m in the check-out at the grocery store and the person in front of me has 1,000 bags of candy to ring up, and I am just passing the time by looking at my phone. I think it DOES matter a lot when my kids need my undivided attention.

On Saturday, I was at a kids’ gym with Emmy, waiting for her class to start. I was watching the previous class wrap-up through the large, glass windows. And here was a boy, probably less than 1 year old, throwing a ball to his dad. And here was his dad, looking at his phone. The ball just fell in his dad’s lap, and he didn’t even notice his son’s effort. Ugh. What are we becoming?

So if traditions, like decorating the tree, do nothing more than force me to put down the phone and be present, then I am incredibly grateful that my husband creates new traditions every week. The more, the merrier! This time with our kids is precious and fleeting. The celebrity gossip and articles with snarky comments that I read on my phone will be around forever.

Thanksgiving

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Thanksgiving

This Thanksgiving has been my favorite so far, and the actual day isn’t even here yet! Just listening to Charlotte recite what she learned at preschool every day has been a lesson in life. At four years old, she’s full of amazement, wonder and fun facts (yesterday was something about white and red blood cells that even I didn’t understand).

I love watching her face as she laughs her way through “The Thanksgiving Song”: “I’m glad I’m not a turkey…They stuff you and bake you, and then they all taste you! I’m glad I’m not a turkey on Thanksgiving Day.”

And every day this week, when she’s climbed in the car after school, she starts excitedly talking about gratitude.

“Guess what I’m thankful for today?” The appreciation for life literally pours out of her.

As I was driving her home, I thought, “At what point does this change?”

Because I’ve certainly experienced it myself. As a child, I had that feeling of amazement and gratitude on a daily basis. I remember bouncing a tennis ball against the side of my garage for hours–just enjoying the sun and the feel of the ball in my hand. I was just happy to be alive. Of course, I wasn’t consciously thinking about being alive. But I was enjoying the moment–taking pleasure in the littlest of things.

And as I got older, that feeling began to seep away. First, there were some mean girls (ugh), and I allowed my spirit and sense-of-self to get crushed. Then there was the sinking feeling that came with getting C’s on Math tests. And then there was the pressures of bills and jobs and life. Sure enough, that incredible feeling of being in the sun with a tennis ball in my hand faded and, in its place, came thoughts of “Why me?” and “I can’t do this” and “Life is so hard.” I kept feeling as though life was just dropping things on my doorstep, and I had to deal with them.

I finally realized that it wasn’t healthy to live that way–to always feel as if life owed me something, and it was my fault for not getting the best out of it. My four year old doesn’t feel that life owes her anything. On the contrary, she enjoys all that life has given her, and she voices her gratitude aloud.

I don’t want that shift to happen for her. Is it inevitable? Gosh, I hope not. How can I help her stay grateful for what she has instead of always reaching for something more? Because that’s where true happiness lies–in looking at what’s around us and saying, “Thank you.”

Today I can make a choice. I can always reach for something more, different, or better…or I can land right where I am. So here’s where I am today: I’m in my soft, colorful pajamas on a Wednesday morning. I’m typing away in the study, listening to the soothing sound of rain on the window. My husband is in the kitchen making mac-and-cheese for the Thanksgiving party at school. My two-year-old is still fast asleep in her bed. And the sound of a happy four-year-old playing make believe floats through the air. Thank you, life.

The Best Line of Poetry…Ever

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TheBestLineofPoetry

We went to a Williams Syndrome Conference over the weekend, and we had a fantastic time. (Thank you to everyone who organized it and to all of the speakers!) It’s bizarre how, after 2 years of completely immersing myself in “all that is WS,” I still have so much more to learn. I’ve certainly come a long way from the confused mom who received a diagnosis that she’d never heard of before, but there’s still a long way to go. We haven’t even had our first IEP meeting with the school system yet, and I’ve heard those can be a doozy!

My favorite session at the Conference was a panel of 4 adults (1 man + 3 women) who have Williams syndrome. I was so moved by what they had to say and, also, by how much they’re accomplishing in their lives. In the beginning, I worried that having WS would be so limiting for Emmy, but there are adults who live completely independently, hold down paying jobs that they enjoy, and drive cars. I think there are a lot of misconceptions about WS and its “limitations,” and it was inspiring to hear these adults focus on their many abilities, not their disability.

And then I heard something that floored me — the best line of poetry EVER.

One of the women was talking about her best friend of 14 years, who is “typical.”

What I learned early on is that people in the special needs community (and educators, therapists, etc.) don’t use the word “normal” to describe someone who doesn’t have special needs. Because: (1) The opposite of normal is “abnormal,” and it’s cruel to call someone “abnormal.” (2) What is normal anyway??? I mean, really. Can we even define that word? I certainly don’t think I’m normal…

If you use the word “typical” instead of “normal,” I promise that you will impress all your friends. 🙂

So this woman, who I immediately adored, was talking about her typical friend. And she said: “She sees me as she sees herself.”

I swear that is the most amazing line of poetry I’ve ever heard: “She sees me as she sees herself.”

And it got me thinking: What if we were to see other people as we see ourselves?

The dad rooting for his son even though he’s on the other team…

The cashier who is taking her time even though you want to get home…

The person who is fishing for his MetroCard before getting in the subway turnstile even though he’s holding up the whole line…

The person with special needs who wants to talk to you…

What if we see others as we see ourselves?

What if we were to approach each day looking at strangers and thinking: You know, we’re a lot more alike than we are different…

I’ll give it a go. Why not?

And I’ll close by saying that I am so touched by people who truly befriend those with special needs. It’s easy to judge someone who is different. It’s much more genuine and beautiful and human to connect with that person and find the ways in which you are more alike, than different.

The Little Things

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When Emmy was first diagnosed with Williams syndrome, I talked to other moms who told me that I would appreciate the little things more. But I didn’t really know what that meant. First of all, at the time I was really upset about the diagnosis and didn’t want to appreciate the little things more. I just wanted Emmy to be miraculously cured. Second, I thought I had already been appreciating the little things with my first daughter, Charlotte, so I couldn’t imagine how I could appreciate them any more. And, finally, I didn’t know which little things they were talking about.

Until I experienced them for myself…

The first time my older daughter, Charlotte, put a toy phone to her ear, and said “Hello,” I thought, “Awww that’s cute.” I didn’t gasp in shock or run to get my camera. It’s expected that a typical child would put a phone to her ear. When a typical child plays pretend, the parent doesn’t go bonkers with excitement. It’s just expected.

Likewise, playing with a toy phone is not considered a milestone. Most parents of typical children could tell you exactly when their child took her first step or said her first word. But they probably couldn’t tell you the first time their child played pretend.

And there isn’t a spot for “first time playing pretend” in the baby book. First word, first day of kindergarten, first tooth, first haircut are all in the book with a blank line for date accomplished…nothing about “first time playing pretend.”

With typical kids, milestones like walking and talking are a big deal. But other smaller things seem to just happen. There’s not a ton of effort put forth by parents and therapists and doctors and other cheerleaders. Things just happen.

Many things with Emmy have been slow to arrive. It wasn’t like I blinked, and suddenly she was using crayons to draw on paper. We practiced a lot. Every time I see her take a crayon on her own and start drawing, I feel an overwhelming sense of joy. That one was a long time coming, and now it feels so good to see her scribbling away.

So in order to get Emmy to play pretend, we practiced. We put clothes on baby dolls. We cooked toy food in little pots and pans. We wheeled toy trains around a track and demonstrated how to say “Choo choo!”

We put toy phones to our ears and said, “Hello, Mommy. Hello, Daddy.”

And when Emmy spontaneously put a toy phone to her ear and said, “Hello,” I let it all sink in and appreciated every single second of that small gesture.

Right now, she imitates us a lot. But when she was younger, she would just watch intently. I used to push trains around the track, while her eyes were fixed on my every action. I would think, “Is she getting this?” And then, a few days or weeks or months later, she would totally impress me by imitating my exact motion and vocal expression. She was paying attention! She was drinking it all in and then showing off her skills in her own time.

I believe that she gets it long before she actually shows it.

And, as I’ve learned to follow Emmy’s pace, there have been many benefits:

1. I don’t make myself crazy with baby/toddler milestone books. I can’t tell you the last time I looked at one of those books, but I think Emmy was probably a few months old. Why fixate on a timeline that probably won’t apply to her and will just make me frustrated?

2. I burst with pride when she hits a big or small milestone. I don’t grumble, “Jeez that took forever.” Instead, I say, “AHHHHH!!! Look what she’s doing!!! Go Emmy!”

3. I really do appreciate the little things more. Here are a few things she did that knocked my socks off and caused me to savor every second:

-She “drove” a car at an amusement park without any prompting. The way she turned the wheel was just glorious. There’s a picture at the bottom of this blog entry: https://williamssyndromesmile.com/2013/09/04/when-you-really-really-really-need-a-vacation/

-She started finishing songs and doing the hand motions. I probably sang “Wheels on the Bus” 7,895 times without her joining in. And then, one day, I started to hear this little voice finish the lines with me. Music to my ears.

-This is a big one. In the past, when she’s been ready to take a nap, I asked “Nap?” and she responded, “Nap!” But lately, when I ask “Nap?” she responds, “Book!” because she knows that I always read her a book before putting her down for a nap. It seems like no big deal, right? If a typical child said, “Book,” it probably wouldn’t be cause for excitement. But it shows that she’s remembering what comes before and after. She gets it.

For me, appreciating the little things hasn’t revolved around the usual milestones. When she started walking, of course I was ecstatic. It was awesome to witness, and I loved cheering her on. But I’ve felt just as much excitement, if not more, over something much smaller — like the day she spontaneously picked up a toy phone and said, “Hello.”

Pint-Sized Professor

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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

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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

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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

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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.