The Time That I Freaked Out

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It’s very bizarre to fill out medical paperwork on behalf of Emmy. Since we moved a couple months ago, we’ve entered a new school system, and we’ve had to find new doctors and dentists. We’ve also signed up for extracurricular activities, like gymnastics. This all comes with a lot of paperwork…and a lot of questions.

First, the questions ask for me to go through her health history. Gosh, this is still tough for me. I have trouble rehashing her heart surgery in 2013 followed by 2 cardiac arrests and a week on life support. She also has a lasting problem from that event, which makes me sad to think about. And then, of course, there’s the fact that she has a genetic condition. And, while I’ve completely accepted and embraced the fact that she has Williams syndrome, sometimes just thinking about that first year can bring back memories of complete uncertainty, confusion, stress, and exhaustion. Trying to grasp what Williams syndrome meant for our child along with setting up doctors’ appointments alongside Early Intervention services was just EXHAUSTING.

Next, after filling out her health history, I’ll no doubt see the following question which is phrased in many ways but most commonly: “Is your child healthy?”

I don’t even know how to answer this question. I mean, yes, Emmy has both Williams syndrome and a lasting issue from her cardiac arrests. But she certainly SEEMS healthy. She smiles a lot, runs around all day, expresses her MANY opinions loudly, and pushes herself in everything she does.

I don’t even know how to define “healthy” when it comes to Emmy. On a day to day basis, she seems healthy to me, even after everything we’ve been through.

Then we’ll have moments that will make me positively freak out.

A few days ago, Emmy ate some mango (her favorite food). Then a couple hours later, she said, “Mommy, I need some help.” I looked over, and she was practically green. She then threw up twice.

And I got nervous. I’ll tell you why… When we were in the hospital after her heart surgery, one of the nurses told me that when something is wrong with the heart, it often presents itself in the stomach first. So vomiting could be a sign of a heart problem.

I tried to put that thought out of my mind and deal with Emmy’s situation as if it were just a stomach bug. I did all the usual things that I do with stomach bugs–cleaned her up, gave her some water; tucked her in bed for a bit. But she wouldn’t settle. I brought her downstairs and sat with her on my lap, as she clung to me. She was acting differently. She could barely sit up. She kept saying, “Mommy, I’m scared.”

All this after throwing up only twice??

She seemed to be getting worse quickly. She was practically limp in my arms, and then her eyes rolled back for a second.

And that was it. My mind took off racing. What if it is her heart? That was all I needed. Without another thought, I grabbed my purse and put her in the car. She didn’t even have shoes on! I ran back in to get her shoes and then hopped behind the driver’s seat. I turned around to look at her again. Am I overreacting??

“Emmy, are you ok? Should I take you to the hospital, or do you want to go back inside?”

She said weakly, “I want to go to hospital.”

Done. I frantically drove to the hospital, peeking back to check on her along the way. She looked like she was going to pass out. Her eyes were closing, and her head was hanging down. I tried talking to her, but she would only answer in a slight whisper.

“YOU OK, EMMY?? ARE YOU EXCITED ABOUT YOUR BIRTHDAY COMING UP???” I was trying to get her interested in something–anything!

When we got to the ER, I breathed a huge sigh of relief. At last, we were safe. Someone was going to help us.

I practically ran her inside, and rattled off her health history. Emmy seemed to perk up when she noticed the tvs. And then she perked up even more when they brought her some Batman stickers. And then she REALLY perked up when they brought her an ice pop.

And all of a sudden, the child who completely scared the heck out of me an hour prior was sitting up in the hospital bed, happily watching Monsters Inc., eating her ice pop, and chatting up the hospital staff. She looked great. And then the attention started to turn to mom…

“So, mom, did you call the pediatrician?”

Nooooo.

“You didn’t call the pediatrician?”

Noooooooooooo. Honestly, it didn’t even cross my mind to call the pediatrician. After what we’ve been through medically with Emmy, I didn’t want to waste a precious second. In the past, I’ve seen her situation change in, literally, a heartbeat. She’s gone from “ok” to “clinging to life” in the space of a few seconds. The doctors will remind me that it was different back then. She was post-surgery. That was 2 whole years ago. But after living through that…after witnessing what happened to her…I can’t just forget. When I see her start to fade on me, my mind goes back there in a split second, and I freak out.

I think the staff in the ER thought I was a little bonkers. My child threw up twice, and I brought her to the ER. That’s all it takes, apparently, for Mom to freak out. I was told that she’s a healthy child, and I should treat her just like any other. And if she vomits, I shouldn’t worry about her heart.

So it seems the answer is, yes, she’s healthy.

But, seriously, telling me not to worry is like telling someone else to stop breathing. Worrying is what I DO. And I’m quite good at it! I’ve actually perfected it, thank you very much. 🙂

But here’s the deal… I wouldn’t be able to live with myself if there were something seriously wrong with Emmy and I brushed it off as nothing. When I feel like she’s giving me signs, it’s impossible to ignore them. I’ve witnessed things changing in an instant. I know the circumstances were different, and that was all 2 years ago. I know she was post-surgery. But after living through that, I can’t forget it.

So, yes, we may be back to the ER one day, and Emmy may get a repeat of Monsters Inc. and an ice pop. But next time, I’ll call our pediatrician on the way over…

Why Words Matter

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I don’t read baby books anymore. With Charlotte, my first born, I read them diligently. I wanted to know when she would be rolling over, standing, and saying her first words. I didn’t really worry about her meeting those milestones, but I wanted to know what was in store for us. When we found out that Emmy has special needs and then when she started missing her milestones, I couldn’t bear to read the books because they served as constant reminders of the things she wasn’t doing yet.

And, often, it wasn’t so much what they were saying as how they were saying it. I would see gentle reminders that some babies just develop later than others, accompanied by words like “Your baby may be normal!” There were reassurances that even if your baby wasn’t meeting milestones, things would most likely be ok. There were broad ranges for milestones and, as long as your baby fell into those ranges, everything would be fine.

But what if your baby didn’t fall into those ranges?

Then I would see words like “Talk to your pediatrician” or “Contact a doctor.”

So everything seemed happy and cheery when your kid was meeting milestones but, if not, you knew that there was bad news lurking around the corner.

There were two camps. The children that were developing “normally” (this word is used all the time) and the children that weren’t. If you were in the first group, the implication was that things were going swimmingly well! But if you fell into the second group, it sounded like things in your life were about to get pretty miserable.

But I have to say that even though Emmy didn’t meet all of her milestones, our life is far from miserable! She is an absolute joy to be around — milestones be damned. No, she didn’t fall into the “normal” (I hate that word) charts, but she has enriched our lives beyond belief. I could gush about her all day but, to sum it up in a word, she’s awesome.

So now I have an almost-10 month old baby, Theo, and I haven’t opened a baby book.

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After years of physical therapy sessions with Emmy, I know a lot about how children develop — more than I ever dreamed I would know. So I have many of the milestones filed away in my mind and, while I don’t obsess over them, I am aware of them. Theo is on schedule, but I still ended up breaking my rule and did a Google search to find out whether standing comes before or after crawling. And that lead me to a page about walking. And here is what I found:

“Most babies take their first steps sometime between 9 and 12 months and are walking well by the time they’re 14 or 15 months old. Don’t worry if your child takes a little longer, though. Some perfectly normal children don’t walk until they’re 16 or 17 months old.” (Baby Center)

“Some perfectly normal children…”

Isn’t it funny that I haven’t looked in a baby book FOREVER — for this reason alone — and then, on my first search about milestones, these are the words I find?

Why are we calling children “perfectly normal”? And for that matter, what about the children who aren’t deemed “perfectly normal”? What about them?

And then, on the next page, the inevitable dismal line:

“Don’t fret if your child is simply taking her time. But if your child doesn’t stand with support at 12 months, can’t walk at 18 months, or isn’t able to walk steadily at the age of 2 years, bring it up with her doctor.” (Baby Center)

Can’t you just hear the threatening music? So now we know that if things don’t happen by a certain timetable, something scary may be lurking around the corner…

Well, what was lurking around our corner was Williams syndrome! And it hasn’t been bad at all! Her beautiful smile is a Williams syndrome smile, and it lights up our lives every day.

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But, beyond all of that, let’s revisit the words “perfectly normal,” and let’s look at them in terms of a child who is typical.

The first word, “perfect,” is a heavy word. We throw it around a lot, but it is heavy. When you strive for perfection, you will always fail — every, single time. Nobody is perfect. Perfectionists always feel like they’re doing something wrong because, until they’re *absolutely perfect*, nothing is ever right. And because they can never achieve the status of *absolutely perfect*, they end up constantly unsatisfied. So a perfectionist, like myself, is often caught in a trap of inevitable failure. Cheerful, huh? 🙂

Perfectionism can be debilitating. It stops you from doing tasks. If I don’t have time to arrange everything on a shelf perfectly, I won’t even put one thing on the shelf. I had to ask my husband to unpack my boxes (we just moved) and put things on the shelves anywhere he wanted because my desire to have things just so was getting in my own way.

I REALLY try not to use the word “perfect” — especially around kids. However, it’s a word that often pops into my mind. If Charlotte carefully writes her name at the top of her paper, it certainly looks perfect to me! But I don’t want to put that on her. So I choose another word. Or if Emmy puts on her socks the right way, it certainly looks perfect to me! But, again, I pick another word.

And after the word, “perfect,” we have another favorite of mine — “normal.” Someone once said that “normal is a setting on the washing machine.”

What’s the opposite of normal? It’s abnormal. Do we really want to call a child abnormal?

I like to use the word “typical.” As in, “typically children develop like this.” But if they don’t, that’s totally ok too. Everyone is different. That’s what makes life interesting.

I feel like there’s a lot of fear around milestones. You’re either developing “perfectly normally,” or all hell is breaking loose. There’s no grey area. I want to share that, in our case, things went as far from “perfectly normal” as you can get. We are all the way at the other end of “perfectly normal.” But I want to let you know that things over here are pretty great too! In fact, they’re magnificent. 🙂

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Starting Over

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One week before Emmy’s first birthday, we were headed to Boston for a “vacation.” A mom asked me why we were vacationing in Boston. Did we have family there? Were we going to take the kids to the Children’s Museum?

I was vague with my response. “Oh you knowww…the usual stuff people do…”

If I had told her the real reason — that we were going to the Williams Syndrome Association‘s National Convention — I would’ve had to tell her that Emmy has Williams syndrome. And I wasn’t prepared to do that.

Very early on in Emmy’s diagnosis, we met with many doctors to find out more about our little girl. One of those doctors advised us not tell people about Williams syndrome right away.

You see, right before Emmy was born, we moved to a new town. So nobody knew us. And the doctor wanted people to get to know Emmy, and our family, first — without the label of “Williams syndrome.”

I took that to heart, and I didn’t tell anybody. Only our immediate families and a few friends knew. As time passed, I used to think, “Gosh this is starting to feel very uncomfortable and secretive.” But so much time had gone by, and I hadn’t said a peep. So it felt strange for me to now say, “Listen, I’ve been meaning to tell you something for the past year…”

It was a cycle that fed upon itself. The deeper I got into the secretive nature of it, the harder it was to say something.

And then, when Emmy was 1.5 years old, and we were a few weeks away from heart surgery, I FINALLY opened up to a neighbor. She was so incredibly sweet about it, and I wondered why I hadn’t just told her all along.

At that point, I kind of began “The Big Reveal” and started telling people left and right. But at this point, it was odd because everyone thought that we were just a regular family going through regular family stuff. And I would say, “Sooo you know us very well by now…but there’s something surprising I have to tell you. Emmy is going to have heart surgery next week” [which was met by complete shock and, sometimes, horror] “and she has something called Williams syndrome, which is very rare, and comes with all sorts of implications” [which was met with more shock followed by kindness].

If I were to do this all over again, I would’ve kept it a secret until I got a better handle on it, and then I would’ve told people. So maybe 2-3 months. After a year and a half, it came across as very shocking. And I think people also wondered why I had been hiding it for so long. When I think back on it, it’s very possible that the doctor meant for me to keep it a secret for 2 months and not a year and a half. But I didn’t think to ask about the exact timeline. I was just trying to process it all myself.

So after “The Big Reveal,” everyone knew. And I actually felt more comfortable with people knowing than not knowing. We needed a lot of support during and after her heart surgery, and people were there for us in droves. I was glad that I shared it publicly (I started blogging a little before then) because we couldn’t have gone through heart surgery without that support.

I was very comfortable with Williams syndrome, very accepting of Emmy, and very open about the diagnosis.

And then we moved.

And I never realized that we would be starting over. We would be back to a point where no one knew. I didn’t even have time to think about all of this before because we moved so quickly. And then once we were here, it hit me. All new people. None of them with any clue about our little family and what we’ve been through.

And now I would have to start telling people again. If I had thought about it before, I probably wouldn’t have imagined that it would be a big deal because I’m so open about Williams syndrome. But, somehow, it ended up being a big deal. Because I’m back in that same picture that the doctor painted early on. I’m new to a town. Nobody knows us. And, yet, we’re carrying a label.

Shouldn’t people get to know Emmy first before I hoist this label on top of her? Shouldn’t people get to know our family before I say, “My daughter has a syndrome that you’ve never heard of…” What would they think?

It’s been so long since I’ve thought about what others think when it comes to Williams syndrome, or how our family will be perceived, or the implications that a label would have on Emmy.

Things have changed because she’s older. She’s 3.5 years old, and she wants to play with other kids. She’s no longer a baby. She’s much more aware of how she’s treated by others and more aware of the reactions she gets. She can read people’s faces now. She can feel how they relate to her and can tell if they’re comfortable around her.

Keep in mind that Emmy doesn’t know what Williams syndrome is. I’ve told her, but she doesn’t understand it yet. Charlotte, my five year old who is typical, doesn’t really understand it either. So it’s a lot to take in. But I think that Emmy can feel that she’s different in some ways. She knows that she takes longer on the stairs when other kids just race down. She knows that she stands in the front of the line because she’s so tiny. I think she knows that there’s something there, and I think she is perceptive about how others relate to her.

So I find myself in the same place but a different circumstance. I’m in a new town where nobody knows about Williams syndrome…but now my child is older. And my mind doesn’t go to, “What will people think? How will they react to our family?” My mind goes straight to, “I just want to protect her.”

My instinct is not to tell. I want to protect Emmy, and I worry about how others will treat her. Not everyone understands what it means to have special needs. Not everyone grew up around someone with a disability. I, myself, had no clue about any of this until she was born.

But, even though my instinct is not to tell, when I finally told people before, life got a little easier. I wasn’t carrying around a secret, and I wasn’t silently censoring myself in every conversation — wondering if I gave too much away.

It might be better for me to tell.

Another Williams syndrome mom said a while ago, “It’s a great way of weeding people out. You can see who you really want to be friends with very quickly.”

So there I was, last Friday, talking to a mom in our new town. A possible new friend. She asked me casually about Emmy’s therapies, which she gets in school. So I replied, “Emmy has something called Williams syndrome.” My explanation of Williams syndrome is still lacking. It comes out in a rush like: “It’s a very rare syndrome that no one has ever heard of and has lots of implications…but she’s doing great!”

I have to work on my explanation. It’s a lot to take in.

But the mom smiled and said, “Oh, ok.”

This is where we are — starting over.

Little Reminders

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Everyone tells you not to compare.

If you have a child with special needs, you tend to compare that child’s progress to her siblings. Because as much as people tell you not to compare, you can’t turn your brain to the *off* position. If you could turn your brain off, you’d stop thinking about the Halloween candy in the kitchen. Or you’d stop thinking about the phone call you have to make by Friday. Or you’d stop thinking about the next chapter in your life.

But you can’t just *stop* thinking. Your brain turns and moves, turns and moves–as much as you might want to quiet your thoughts. I’ve actually tried meditation many times, and I’ve gotten decently good at it. But even if I sit down to quiet my thoughts for 20 minutes, only 3 minutes of that will be successful. For the other 17 minutes, my mind is still on overdrive.

So if people tell me not to compare my children, it’s impossible because I can’t just shut down my thoughts.

But I want to explain that comparison isn’t a bad thing!

I used to beat myself up about it. I would think: Hmmm…Emmy’s not rolling over yet. I’m pretty sure Charlotte was rolling over by now.

Or I used to think: Was Charlotte able to cross midline this early? Emmy isn’t doing it yet. (Midline = a term I never thought I would have to learn. Now, I know it well.)

And when people would yell at me to stop comparing, I would criticize myself for doing so. What’s wrong with me? Why can’t I stop?! Yet, I was unable. So let me rephrase…

I was thinking.

It’s ok to think, right? Everybody does it. And it doesn’t sound as bad as “comparing.”

When I was thinking about Emmy’s progress in relation to Charlotte, I was simply *thinking.* I love, love, love, love, love Emmy dearly. I think she is amazing and smart and funny and gorgeous and sweet. I feel the same about Charlotte and now, Theo. But my kids are different. They do things on different schedules. They have different personalities. They progress differently. It’s not that one who moves more quickly is better. It’s that one who moves more quickly is different.

When people use the term “compare,” it sounds as though one is better than the other. That’s not true. They’re just different.

And I think it’s ok to observe differences. I think parents should give themselves permission to see the ways in which their children are unique.

There is a parent who has twins with Williams syndrome. She commented that she has a hard time not comparing them. Can you even imagine having twins and being told not to compare? Isn’t that the most impossible task in the world? I mean, how do you NOT compare?

But please understand that these comparisons aren’t negative. They’re just thoughts…observations. As human beings, we have thoughts. And, unless we’re going to meditate 24-7, it’s impossible to shut our brains off.

Now, of course, if you notice that your comparisons are turning negative, that’s a different story. “She’s not crossing midline yet” is different from “Why can’t she cross midline yet when her brother did it so perfectly at 1 month old?” Of course, that’s totally different. And, yes, that would be negative.

But most parents I know are proud of even the smallest accomplishment. Their comparisons aren’t negative. Their comparisons don’t affect their LOVE. These are just thoughts…passing thoughts. Love is constant.

So if you have one of those passing thoughts, don’t beat yourself up (as I did for so long). It’s ok to see differences. They’re just little reminders that your children are unique and special in their own ways.

As you can see, my girls dressed very differently for Halloween. Charlotte knew for months that she wanted to be princess Elsa. That’s it–do not pass go. Emmy, on the other hand, isn’t into princesses. She has always been obsessed with monsters. First, our red, furry friend, Elmo. And now, blue Sulley from Monsters Inc.

I love that she loves monsters!! It’s different. It’s cute. It shows a side to her personality–a fun and daring side. She’s rarely afraid. In fact, when Charlotte didn’t want to stick her hand in the “eyeball” soup at Halloween, Emmy dove right in–grabbing prizes for both of them.

Of course I had the passing thought: It’s funny that Emmy is so into monsters, while Charlotte never was.

But it’s just that…a thought.

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She Can

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You have a bowl of ice cream in your hands. A bowl of raspberry ice cream with rainbow sprinkles. And you’ve been waiting all day to eat this thing. You’ve been talking about it to anyone who will listen. Well, the moment is finally here!

You push your plastic, white spoon into the ice cream and pull it out…nothing. You jam your spoon in again, a little harder, and pull it out. Nothing. Your mouth is watering. You notice the other people around you. Everyone else is absentmindedly dipping their spoons into their ice cream and pulling them back up with a heaping mound of yummy. No one else seems to have trouble with this. But this is really hard for you. You even mutter, “is really hard.”

You try again, and finally you manage to spear a little bit of ice cream with the tip of your spoon. Victory!! But as you pull it towards your mouth, the tiny bit of ice cream falls off the spoon and onto your lap. Now you’re wet, your clothes are stained, and you still don’t have ice cream or sprinkles in your mouth.

But you don’t give up. And you don’t accept help. This is your battle to win. Again and again you try until, finally, you manage to keep ice cream on your spoon long enough to get it in your mouth. You weren’t able to get sprinkles too, but that’s ok. You’ll try again next time. As you enjoy your first small bite of ice cream, you look around. Everyone else is done. Their bowls are empty; licked clean. In the time it took you to take that first bite, everyone else gobbled theirs down.

So it takes you a little longer. And it’s a little harder. But you don’t give up. You keep eating away, content to finally have your ice cream after a day of waiting.

This is what it’s like for Emmy when she eats ice cream, something that most people do absentmindedly. When I eat my ice cream, I don’t think about what I’m doing. It just, well, happens. But when Emmy eats ice cream, she has to work harder.

But she does it! She tries and, eventually, succeeds.

This is why it upsets me so much when people assume that children who have special needs can’t do things (Just Like You — my last post).

It’s not that they can’t.

They can, but it may take a little longer. They can, with help. They can, but they may need modifications. They can, with the proper supports in place. But they can.

Sometimes Emmy says, “I can’t.”

Not only are things harder for her, but she is TINY. Climbing on a big couch is difficult for her. Operating scissors with her little fingers is tough. And sometimes she defaults to “I can’t.”

But that’s not true. She can, and she proves it time and time again. Because with a little nudge, she’s up on the couch. With the correct positioning, she’s operating those scissors. She can. She just needs help sometimes.

And sometimes she doesn’t need help. There are many things that she does beautifully on her own, like dribbling a soccer ball. She learned that one from her older sister.

Last night at dinner, Charlotte proudly spelled her first and last name aloud. So, on a whim, my husband Dan asked, “Emmy, can you spell your name?”

She looked straight at him and replied, “E-M-M-Y.”

Dan and I practically leapt into the air and shouted, “Yes, yes, yes! That’s it!”

Then she gave a grin and continued calmly, “O-A.”

We’ll take it!! 😉

The teachers at her preschool have been awesome about including Emmy in all of the activities that everyone else does. And she’s learning so beautifully from both her teachers and peers. Sure, her construction-paper pumpkin looks a little different from the others. And her circles are not as perfectly formed. But she’s doing it all.

I think it’s important to acknowledge that people with special needs CAN.

She can. She will. She does. She did.

Just Like You

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Photo credit: nj.com

Liam is a 4 year old little boy who wanted to have his birthday party at a gymnastics studio in New Jersey. When his mom went to sign the contract, she noticed that there’s a “Special Needs clause.”

It reads: “Special Needs children: Please indicate if your child or any children attending the party have any mental or physical disabilties/special needs. (Surgent’s Elite is not certified in special needs instruction and reserves the right to deny party and gymnastics instruction.)”

Liam’s mom asked about the clause, while mentioning that her son has Down syndrome. Consequently, the gym turned her away.

This didn’t happen in 1954. This didn’t happen in 1994. This didn’t happen in 2004.

This happened YESTERDAY.

You can read about the story here:

http://www.nj.com/union/index.ssf/2014/10/cranford_mom_of_boy_4_with_down_syndrome_denied_birthday_party_at_surgents_elite_gymnastics.html

And you can read the contract here:

Click to access PartyContract.pdf

(***Update: The contract appears to have been taken down. However, you can see it if you click on the link to the story and scroll to the second image:

http://www.nj.com/union/index.ssf/2014/10/cranford_mom_of_boy_4_with_down_syndrome_denied_birthday_party_at_surgents_elite_gymnastics.html)

I’ve been upset about this since it happened. I assumed that this was a misunderstanding. And then, when I realized that it WASN’T a misunderstanding, I figured that the gym would quickly apologize and give Liam a free party. On the contrary, they doubled-down on their decision.

Their policy is that no children with special needs are allowed at this gym. Not for parties. And not for classes. Again, this happened YESTERDAY — not 50 years ago.

What the owner of this gym doesn’t understand is that Liam is just like every other child. I don’t even know him, but I know he laughs, cries, likes to have fun, and loves birthday parties — especially his own. How do I know this? Because he’s just like me. He’s just like you too.

People with special needs are human! They’re not meant to be segregated by our society. They’re not meant to be excluded from activities. They’re not meant to be pointed out and sent packing.

Imagine if this was you. Imagine if you wanted to have a birthday party at a particular place and the owner said, “You’re not allowed here.” Imagine how that would feel.

Or imagine if you were a guest at a birthday party, and you showed up in your best outfit, only to be turned away at the door. “Didn’t you see our clause? You’re not allowed here.”

Now imagine that this wasn’t you…but that this was your child. Your child showed up for a birthday party and was turned away at the door.

Just imagine that tear-streaked face. “Why don’t they want me here?”

Imagine telling your child why he or she is not allowed at this birthday party.

“It’s because you’re different, honey…”

“I am? How?”

People have left comments on the news story supporting the gym. They say things like, “Well, what about medical issues? I can see where the gym is coming from…”

So where does it stop? Pretty soon, people with special needs and/or medical issues can’t go to gyms, can’t go to parties, can’t go to parks, can’t go to malls, can’t ride in cars…

Everything is a liability, right?

I have a better idea. How about we treat people with special needs as if they’re just like us. We’re allowed to go to gyms, parties, parks, malls… We’re allowed to experience all aspects of life. That’s called being human. Everyone is afforded the same rights.

I know that my daughter loves birthday parties. LOVES THEM. I’m imagining her getting all ready for a party, cheering in the car when we drive up, and then getting banished at the door because “Didn’t you see our Special Needs clause?”

I’m imagining her turning towards me with that tear-streaked face and saying, “Why?”

And what would I tell her? That people with special needs aren’t allowed to go to birthday parties? Really??

I can’t do it. I can’t tell her that. She deserves MUCH, MUCH, MUCH better than that. She’s an incredible kid.

And if you met her, you would see that she’s just like me — and just like you too.

Don’t Help Me

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Emmy and I were walking down the front steps to our car, so I extended my hand to help her out. Do you know what she said?

“Don’t help me.”

Here I had just written a post about a mom who helped Emmy down the stairs of her school (The Kindness of Others), and now my daughter is saying “Don’t help me.”

Can you imagine how I felt?

Ecstatic!

When you first find out your child has a disability, you go through all kinds of emotions and work through many scenarios in your head. Some of the things you likely think about are, “Am I going to have to help her with everything? Will she live with me forever? Will I even know what retirement feels like?”

There’s the expectation in our society that you raise your kids until they’re 18, and then they fly the coop. Of course, parents will often share winks when their kids come back home to save up money before getting a place of their own. But do parents of kids with disabilities share those same winks? Or is it just assumed that your child will live under your roof forever?

When she was a baby, I had no idea what Emmy would be like, and I didn’t know what was in store for our future as a family. As she gets older, she’s showing more and more of her personality. She is feisty! She is determined! She is persistent! 

This past Easter, she was playing with a plastic egg, trying to put it back together. That’s really hard for someone whose little fingers can get tripped up on each other. She fought with that egg for quite some time…until she fit the two pieces in place! Then she gave her signature smile and said, “I did it!”

And a couple months ago, I heard the sound of a music box coming from the girls’ bedroom. It takes a lot of effort and strength to turn that heavy knob. I thought, “Charlotte is playing with the music box again.” But wait…it couldn’t have been Charlotte — she was in the livingroom. I poked my head into the bedroom to see Emmy determinedly turning the knob on the music box. And then I ran to grab my camera.

She wants to do what the other kids are doing. It may take longer. It may be harder. But she wants to do it.

When she was first diagnosed, I had no idea that the strength of her determination would take her so far. I was more focused on the negative “What ifs.” What if I have to do everything for her? What if she’s completely helpless?

Here’s a thought…

What if she totally surpasses every one of my expectations? What if she teaches ME how to be persistent?

A secret…I can be guilty of giving up too soon when I’m not good at something. Eek! It’s true. I have been known to swiftly turn around when something is out of my comfort zone. You can be SURE I wouldn’t sit down with that Easter egg for a half an hour if I didn’t fit it into place within the first three minutes. And if I struggled to turn the knob on the music box, I probably wouldn’t have kept at it. I would’ve found something else that came more easily to me…

But Emmy doesn’t do that. She pushes her boundaries! I’m glad she doesn’t take after me in that way. 😉

So, yes, I’m totally ok with the fact that she doesn’t want my help. You go, girl!

The Kindness of Others

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

“Want some help?”

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

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

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

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

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

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

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

Time stood still. Everything became softer. 

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

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

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

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

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

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

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

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

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.

Inseparable

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These two have become inseparable, and that makes me so happy.

The backstory here is that, during my pregnancy with Emmy, I constantly fantasized about the relationship between my daughters. My sister and I are very close, and I could only imagine how strong the bond would be between Charlotte and Emmy. I imagined them just like my sister and me–sharing secrets and giving advice.

My weaknesses are my sister’s strengths. She’s six years younger than I am, but she’s often stepped into the big sister role on my behalf. I used to be painfully shy, and I would be terrified to return anything to a store. When I was fourteen and she was eight, my little sister marched into a music store on my behalf, walked right up to the register, and said, “Hi. I need to return this CD please.” I cowered towards the entrance of the store and peered around the aisles to see how the return was going. She came back triumphant with the money in her hand. I was always amazed at how easy she made it look. In a way, it was embarrassing to rely on my little sister. But I was also glad that I had someone in my life who would stand by me–no matter what.

Now that I’m older (and maybe a little wiser), I feel like I can pay it back. I’m usually able to give her a glimpse of life experiences before she goes down any road. I dated a couple of guys who were really (how can I put this nicely…?) awful. I like to think that she learned from my heartache and, sure enough, she was able to escape all the bad boys and ended up with an amazing boyfriend, who later became her husband. I’ve also been able to give her advice about her career or her life’s purpose. And, even though I’m the big sister, she still gives me tons of advice too. She’s mature–that kid. (She’s almost 30, by the way…)

I feel as though we have an equal give and take, and I value that so much.

And I saw the same for Charlotte and Emmy.

Then we found out about Williams syndrome, and all my visions of replicating the bond that my sister and I have went right down the drain. I just didn’t know anything about Williams syndrome. I didn’t know how Emmy would act or talk or think. It was an enigma. Would she be able to offer her strengths for Charlotte’s weaknesses, as my sister has done for me? Would she be able to give career advice? Would she know how to keep secrets? Would she even want to keep secrets? And how would Charlotte feel towards her little sister?

Early on, I started looking for stories about people who have siblings with special needs. I did find some very sweet stories. But I also found other stories–ones about feeling ignored by parents or resentful and angry. I found one story that really shook me. It was about a boy who was so embarrassed by his sibling with special needs that, instead of standing up for him, he joined the bullies in their taunting. Every day after school, a few bullies and his own brother made fun of this little boy as he walked home. GOOD GRIEF!!! That was hard for me to digest. If your sibling won’t stick up for you, who will?

All of this has been swirling around in my mind since Emmy was born. I’ve talked to my own sister about it several times. On the day we found out Emmy’s diagnosis, I remember sitting on the phone with my sister, crying, and asking, “But do you think they’ll be like us? What if Charlotte needs advice about her job? Will Emmy be able to give it to her?”

And my sister said the most wonderful thing: “Maybe Emmy will able to give the best advice of all. You just have no idea how she’ll see things. Maybe her way of seeing things will be so different from everyone else’s that her advice will be the most helpful.”

That positive spin really, really helped me.

And as the years have passed, this younger-version sisterly bond has grown very tight. When Emmy was a baby, she and Charlotte had the typical baby-toddler relationship. Sure, Emmy was cute, but she wasn’t able to communicate yet and cried…a lot.

The first glimpse of their close bond came when Emmy was in the hospital for heart surgery about a year ago. Every day, for twenty-two days, Charlotte would bring home a drawing from school that said “Emmy” all over it. If you gave her a crayon, she would just write “Emmy Emmy Emmy” over and over. She got a chalkboard for her birthday last year and, sure enough, the first words she wrote were “Emmy Emmy Emmy.” To this day, almost every time she makes a piece of art, she writes “Emmy” at the top. She doesn’t write “Charlotte.” She writes “Emmy.”

And now, as Emmy has become more verbal, they really have fun together. They playfully tease each other with high-pitched voices, they laugh and roll on the floor, they tickle, they share toys, they draw together; they hold hands.

Charlotte loves to be the teacher. “Emmy, look how I brush my teeth. See that? Now, you try it.”

And Charlotte is such a good cheerleader too. “MOMMY! DADDY! You won’t believe what Emmy just did!!” She’s so proud when Emmy hits little milestones, and she really notices those milestones, just as we do.

At almost five years old, Charlotte has started to develop fears (monsters, darkness, bugs). And wouldn’t you know that two-year-old Emmy has become her protector? If Charlotte is afraid to go to sleep at night, I say, “Don’t worry. Emmy is right here. She can protect you from anything.” And that seems to work!

On her end, Emmy just adores her big sister. We were at the hospital the other day, and someone who works there was named Charlotte. Well, every time Emmy heard “Charlotte,” she looked around frantically and asked for her sister.

Also, Emmy is eager to show her big sister any new thing. If she puts on funny sunglasses or finds a sticker or opens a book, the first person she wants to show is Charlotte.

At the dinner table, Dan and I just watch the two of them banter and giggle. There isn’t much eating going on (Charlotte is repulsed by my food most of the time…), but there is a lot of laughter. It will be interesting to see how their dynamic evolves when a little boy arrives in June. Right now, I am so happy with how close they’ve become. It’s better than I even imagined.

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