The Best Line of Poetry…Ever

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

TheLittleThings

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.”

Loud and Proud

LoudandProud

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

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

So I don’t have to tell anybody.

Nobody needs to know.

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

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

I saw it because I knew it.

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

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

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

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

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

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

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

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

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

Gratitude

Gratitude

I have a confession. I can be kind of a complainer.

You probably wouldn’t know it from reading this blog because:

(1) I’m not really focusing on the trivial things about my life. I’m not going to put my to-do list on here, though I would really like for everyone to help me tackle it collectively! 😉

(2) Most of my complaints come when I’m talking. When I sit down to write, I’m able to hone in on the positive.

(3) I am constantly striving to be optimistic. It’s a personal goal of mine. So I’m trying to put the good energy out there!

But, really, I can be kind of a complainer. It’s a quality that I very much dislike about myself and one that I’m trying to change.

So I am proud of a huge stride I made in that direction yesterday!

Yesterday was my 35th birthday. I’m a big, big birthday person. I’ve always enjoyed my birthdays. That has changed slightly as I’ve gotten older and found a few grey hairs but, for the most part, bring on the presents and the cake!

But yesterday didn’t feel much like a birthday — at first. Earlier in the week, Emmy and I traveled to Kentucky to meet with a wonderful team of Williams syndrome researchers, and yesterday was our flight home. Due to bad weather, we ended up getting stranded for 6 hours in our connecting airport, Charlotte (coincidentally, also the name of my older daughter!). This wasn’t just any 6 hours, but the 6 hours around dinner and sleep time. Yikes.

It had been a long trip, and I was exhausted. Not Emmy though! She wanted to run. The airport was packed with people waiting for delayed flights, and Emmy got her exercise running in and out of people and their luggage (with me trailing behind calling “Emmy! Emmy!”). This kid was having so much fun. If someone dared look her way, she would flash a huge smile, turn on her heel, and keep running. In the middle of the running, she would check back in with me for her supply of crackers to keep her going.

It occurred to me that chasing my kid through a busy airport for hours was not how I imagined spending my 35th birthday. It also occurred to me that this is the same kid that had heart surgery a couple months ago, and now her energy was limitless. When people remarked on how cute she was, I just wanted to grab them and say, “Let me tell you what she’s been through!”

When I managed to corral Emmy for 2 seconds, a fellow passenger came up to me and said, “They might cancel our flight altogether. They’re going to make the call at 9:00 pm.”

I stared at her blankly. I had already been at the airport for 6 hours, and this flight might still get canceled? I imagined finding a hotel room and then a taxi, all without our checked luggage and spare diapers. I imagined Emmy jumping on the hotel bed at midnight. I looked over at the flight board. Every flight going to our destination said “Cancelled” next to it. Except ours. Ours still said “Delayed.” There was literally a column of red “Cancelled”s and then our beautiful flight — a shining beacon of hope — that was still holding strong.

And 15 minutes later, they made the call that we were going to take off! I nearly hugged the person next to me. I was suddenly filled with so much gratitude.

We took off around 10:00 pm. Emmy curled up on my sweatshirt, and slept the whole flight. She’s actually quite good on planes. Whenever we board, people always look at me like, “You seriously brought a child on this flight?!” And then when we land, they give me big smiles and say, “She was so GOOD! So QUIET!” She knows how to make friends…

So Emmy slept, and I sat there thinking about my 35th birthday, which was nearly over. I could complain about everything under the sun. For sure, there was A LOT to complain about. I could go on for days.

Or I could switch my mindset to gratitude.

I could start with “thank you”s.

My daughter, who had heart surgery a few months ago, was just running around. Thank you. Furthermore, our flight was the only flight that wasn’t cancelled. Thank you. We were going home! I couldn’t wait to see my older daughter, Charlotte, and I also couldn’t wait to see my husband. Thank you.

I decided that I didn’t want to ruin my birthday with complaints. I wanted to enjoy it. So, while Emmy slept, and as I felt the plane hum under my feet, I kept running a list in my head of things to be thankful for.

I told myself: There are many reasons to want and many reasons to be unhappy. We can find them almost anywhere. Today, I choose to be thankful for what I have.

It was an important lesson for year 35.

And when I saw my sweet husband at the airport, with a big bunch of yellow roses, I was so thankful that he knows that birthdays are special to me too.

For all that I could possibly complain about, today is different. Today I choose to be thankful.

The Scar

TheScar

I have to be honest. Before Emmy had heart surgery, I was really worried about the scar. Baby skin is so pure and soft. It symbolizes newness and promise and possibility. Whenever they show diaper commercials on tv, they zoom in on the baby’s chubby, soft, flawless skin.

Babies aren’t hardened adults with tough skin yet. They don’t know about the world and its difficulties. So the idea of cutting into Emmy’s gentle skin just slayed me.

Plus, I’m squeamish. I can faint at the sight of blood or anything resembling an open wound. When I was in middle school, I cut my finger in Woodshop class. I looked down at the blood and fainted, falling backwards and hitting my head on a metal filing cabinet. I was taken to the emergency room for the major gash in the back of my head, not the tiny cut on my finger.

So I was nervous. But I was desperate to be there for Emmy and not let my embarrassing squeamishness get in the way.

When Emmy first came home from the hospital, I was so happy to have her home that I felt like I shouldn’t care about the scar. My head told me to just be thankful that she was alive. But every time I glanced at the scar, I thought I was going to faint. From what I’ve seen of other kids, Emmy’s scar is particularly noticeable. Her surgery was back in May, and the scar still looks reddish pink. (Don’t worry — she doesn’t have an infection.) I think it’s because she was on life support for almost a week, and her chest remained open during that time. It didn’t heal as cleanly and quickly as some other scars I’ve seen.

Also, when she first came home, every time I looked at the scar, it brought back a rush of emotions. It reminded of the tough time she had after heart surgery and the fact that she almost didn’t make it. I felt like I was reliving it again and again and again. Those feelings have subsided a bit with time, although I can still go back to that hospital room in my mind with a word or a smell or the sight of an ID badge that says “Parent Pass.”

Emmy, on the other hand, seems quite comfortable with her scar! She points to it and say “boo boo.” She lifts up her shirt for people to see. One woman remarked that she seems proud of it. I hope she is. She sure earned it.

I want her to be proud of it as she gets older too. When we’re young, scars can be a badge of honor. And later in life, we can get more self-conscious. I have a scar over my eye from when I fell on my lunchbox as a kid. I never thought twice about it until I got older and started to critically examine my face in the mirror. “That needs to be plucked…that doesn’t look good…and, oh jeez, that scar…”

I hope I can continue to foster Emmy’s pride in her scar. A nurse recently said that she doesn’t like the term “congenital heart defect” because it attaches a negative connotation to something that kids should actually be proud of. They don’t have the scar because they’re defective. They have it because they are downright amazing.

I joined a group on Facebook called “Mended Little Hearts” for families of children with Congenital Heart Defects. Every time they post a picture of a little boy or girl and I see that scar peeking out from the top of a shirt, I feel an instant connection with a stranger.

“Emmy has that too,” I think.

The scar didn’t mar her skin like I feared it would. It didn’t take away from her beautiful, soft, gentle baby self. She still is my snuggly sweet little girl, full of promise and possibility. And now she has a badge of courage too.

Going to the Chapel

Goingtothechapel

I’ve been thinking about Emmy getting married. Yes, I realize she’s only 1.5 years old. Hear me out.

When Emmy was born, I thought that her life was full of limitless possibilities. The world was her oyster. She could be President. She could be an astronaut. She could be a lawyer or a doctor or a professor. Anything at all. There is joyful freedom that comes with telling a child, “You can be anything you want.”

Five weeks after Emmy was born, I found out she had Williams syndrome and looked online to find out more details about her condition. Within seconds, I was distraught to see all the things that she might never do: drive a car, live on her own, pursue a career, get married, have children…

There is nothing quite like sitting on the couch with a beautiful newborn baby in your arms and staring at a long list of things that she may never do. My limitless world of possibilities vanished, and I found myself hoping that she would be able to just cross the street or tie her shoelaces.

Early on, the topics of marriage and children were constantly on my mind. If my children don’t want to get married or have kids of their own, that is totally fine with me. But I always imaged that they would at least have the choice to do either of those things. I couldn’t get over the idea of Emmy’s choices being taken away right from birth.

Williams syndrome was not in either of our families before we had Emmy. It was a totally random (1 in 10,000) occurrence. However, if Emmy has children, she has a 50% chance of passing it along.

I struggled with the marriage and children questions for a while and then finally managed to file them away into “things to worry about waaaaay down the road.”

Well, last night the questions popped back up again. We rented a lovely documentary called Monica and David about two people with Down syndrome who got married. JUST BEAUTIFUL. I highly recommend renting it on Netflix. It illustrated so clearly how people with special needs want the same things as everyone else. Above all, they want to feel love and connection. That is really the basis of all human life. And when Monica and David expressed their wish to have a child, to the dismay of their family members, it was because they had so much love to give.

There is an image that keeps scrolling through in my mind. The image is of Emmy playing with a baby doll and saying, “I am the mommy, and this is my baby,” as Charlotte has done countless times before. It’s the image of Emmy saying, “When will I be a mommy?” as Charlotte has asked countless times before. It’s the image of Emmy saying, “When I have a baby, you will be the grandma, right?” as Charlotte has reasoned before.

And then there’s the question that I’m left with every time this image passes through my mind: What do I say when this image becomes a reality?

I don’t know the answer yet, but I know that I want Emmy to have all the limitless possibilities that I originally envisioned for her–before I knew about Williams syndrome. I want her to have choices, and I’m trying to figure out how to make that happen.