To the Newly Diagnosed

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A couple people whose newborn babies were just diagnosed with Williams syndrome contacted me over the past few days. They found my blog and were comforted by the cute pictures and stories about Emmy, who has brought such incredible joy to our lives.

When you first find out that your newborn baby has any kind of syndrome, it can be a devastating time. You were expecting the experience that you so carefully planned out in your mind (What to Expect When You’re Expecting, anyone?? That book certainly doesn’t talk about Williams syndrome!). And then you find out that the little person you just gave birth to had a secret when he/she was in your belly–and you had no idea. You Google the syndrome and find information that frightens you. There may be serious medical complications, and there will surely be learning disabilities. How could this little baby that you don’t even know yet come with a laundry list of possible problems? It’s the biggest shock of your life, and you’re not even sure where to begin.

And here is where the wedge comes in. A barrier sinks down in between you and your baby, and it’s completely out of your control. You want so badly to lift that barrier. You want to stop the rush of feelings that come at you every day (sadness, guilt, anger, confusion). You want SO BADLY to accept this baby. You want to just “get over” what you’re feeling. What can’t I stop thinking about this syndrome? And then you wonder…When will it get better? When will I stop feeling like an awful person and begin to embrace this diagnosis and accept my own child?

I think we’re expecting a lot from ourselves. We had a certain vision in our mind. That vision was completely turned upside down, and we expect ourselves to just “get over it.” There’s actually a grieving process that needs to happen. You need to grieve the loss of your original vision–the perfect plan that you had in your head. You need to allow yourself to feel every single feeling that comes your way–without passing judgment on yourself.

And then, with time, that barrier will start to lift. You feel yourself getting drawn into your child. You stop thinking about Williams syndrome as much. You start to really fall in love with who your child is becoming. Those old visions that you once had are now replaced by new visions and plans. You get excited at your child’s potential. You see your child blossom into a sweet, loving person, and you can’t believe your luck. You were given this incredible child. You were given this opportunity to stand side-by-side with your child and watch him or her do amazing things. You were brought into a special world that not everyone gets to see.

For me, it was Emmy’s personality that changed everything. Early on, I read that people with Williams syndrome have “a very endearing personality.” They have big smiles and are overly friendly. I clung to those words as if they were my life raft. Everything else I read seemed scary. But “endearing personality” and “friendly” were music to my ears. Please let this be true, I thought.

And then Emmy cried and screamed for 6 long months, and I thought “Well, I guess this isn’t going to be true in our case! There goes that life raft!”

And then came the big smile that turned my world upside down. HOW I LOVE THAT SMILE!!! That was a Williams syndrome smile, and it was big and beautiful and bright. It was a glimpse into her personality.

The next thing to emerge was the friendliness. We’d be sitting at a restaurant chatting away, and then someone at a nearby table would squeal with delight. I’d look over, and a woman would be waving to Emmy and saying to a friend, “She’s so cute!!” I’d look at Emmy, who was happily waving back and grinning.

The thing is that she knows she’s cute. She knows exactly how to draw you in. First it’s the smile, then it’s the narrowing of her eyes and the tilt of her head, and now it’s followed by a phrase. She might say, “Hi. How you doing?” or she’ll call out, “Hi, kids!” or she’ll even blow you a kiss. I mean, she KNOWS what she’s doing, folks. She KNOWS that smile is pure gold.

The other day we had an evaluation at a school with teachers that are unfamiliar to her. In no time, she was putting on a show of “Twinkle Twinkle Little Star,” complete with smiles and hand movements. Anyone watching can’t help but say, “AWWWWW!”

She’s also very funny. If you ask her an obvious question (like “Is that a shoe?”), she’ll give you an exaggerated but joking “Noooooooo.” And then when you respond, “No? Are you sure??” She’ll say “Nooooooo” again, just to get you to laugh. She knows it’s a shoe, but she’s pulling your leg.

And she loves to chase her sister around the house while saying nonsense words like “Beebee beebee beebee.” Charlotte will run away from her laughing until, finally, both girls collapse in a giggling heap on the floor. It’s so much fun to watch.

So to the newly diagnosed I say: Wait.

It will take time to get to this point. And, in my experience, the first year is the hardest. So let yourself feel all of those feelings. Don’t pass judgement on yourself. Just really feel it. Get mad. Scream. Be upset. Say, “It isn’t fair!!”

And then, as the days, weeks, and months pass, things will change within you. You will connect with your child. You will fall in love with your child. You’ll be bragging about how wonderful he is. You’ll be glowing, fresh from the thrill of something new that she has done. And, even though you didn’t sign up to travel this road, it will feel as if this was meant to be–all along.

Blogiversary

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

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

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

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

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

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

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

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

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Party of Five

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Something to Watch this Weekend

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

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

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

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

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

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

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

Or this one? Monica and David

Or this one? Best Kept Secret

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

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

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

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

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

Pint-Sized Professor

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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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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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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.