Category Archives: Support

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.

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.

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.

He’s Home!!

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Thanks for all of your well wishes and words of support! They mean so much! Theo came home yesterday. He spent 8 days in the NICU which, coincidentally, was exactly the same amount of time as Emmy when she was born. Theo had RDS (Respiratory Distress Syndrome) and PPHN (Persistent Pulmonary Hypertension of the Newborn). Emmy, too, had PPHN. Isn’t that bizarre??

It’s probably obvious to parents of children with Williams syndrome that Theo doesn’t have that diagnosis as well. (You start to become an expert at identifying the facial characteristics.) But I can’t get over the fact that both kids had PPHN and ended up in the NICU. (By the way, Charlotte was healthy as an ox when she came out. All 3 kids were full-term C-sections.)

Over the past few years, I’ve become fascinated by genetics. If I had more time, I would study it.

For now, I’m tired and totally spacey. (I can barely put a sentence together. I keep saying to Dan, “Can you get that thing? You know that thing? It’s on the other thing?”) But I am also THRILLED to have Theo HOME!

Oh and I am so thankful for NICU nurses. PICU nurses too. Labor and Delivery nurses too. NURSES IN GENERAL!!!! They took such good care of all of us. Thank you!!

Here are pictures of the girls holding their baby brother for the first time. Charlotte was talking in a sweet baby voice: “Hello, little Theo. Look at your little feetsies!” And Emmy wanted desperately to hug him, kiss him, and hold his hand. She kept saying, “My turn!”

And Theo looks totally different. He lost a bit of weight. We’ll see what he looks like when he fills out more.

Charlotte

Emmy

Happy to be home!

Theodore

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I was actually in the middle of a blog post on Monday when I clicked “save draft” and headed to my doctor’s office. My blood pressure had been high for the past few weeks, so they asked me to come in for another check. Sure enough, it was even higher. They sent me to Labor and Delivery, where it was determined that we should go ahead with my C-section, three days earlier than scheduled.

I was nervous about the C-section, but I’m nervous anyway when it comes to surgery. It did seem as if my body was giving me signals that it was time. The high blood pressure was a problem and, sure enough, when the OB opened me up she found the uterine window that we’d be warned about.

When I had Emmy, my uterus was very thin, and we knew that we would have to be careful during this pregnancy. A thin uterus could lead to a uterine rupture, which would be bad news for everyone involved. I was monitored during this pregnancy but, sure enough, when the OB performed the C-section a very, very thin window was there. She also saw my baby’s hand under it, waving. So, yeah, we were advised not to have another after this one…

But here he is! My third baby, Theodore. We call him Theo. 🙂

When they put Theo on my chest, I immediately noticed that he was coughing up a fair amount of mucus. I knew right away that he was going to the NICU. I’ve learned so much since Emmy was born. I know the signs. Theo actually didn’t look as bad as Emmy. When she came out, she was blue, ice cold, and had a strange cry (like a cat with its tail caught). Theo, on the other hand, was rosy and warm, and his cry sounded substantial, though a little garbled from the mucus. But I just had a feeling.

Sure enough, Theo ended up in the NICU. His blood sugar was low, but it looked like all he needed was a little intervention and some time to clear the mucus out of his lungs. I actually felt ok with him going there. It wasn’t ideal, but I knew that they did wonderful things for Emmy when she was born, so I wasn’t as afraid as I was the first time around.

I put on my brave, big girl smile and waited patiently for him to come out of it. And he was doing ok for a while…until he wasn’t.

A day or two later (I can’t even remember…), the doctor came into my room to say that Theo was requiring more oxygen support and would have to go on a ventilator. I couldn’t help myself and asked about all kinds of hypothetical situations. And then I just lost it. Everything came up again. And I mean EVERYTHING: Emmy’s time in the NICU, Emmy’s heart surgery, Emmy’s cardiac arrests; Emmy’s crash onto life support. I relived all of it. While Dan went down the hall with the doctor to watch Theo’s vent get put in, a really sweet nurse came to comfort me. I told her that you can only be brave for so long before you just lose it…and I lost it.

When I wiped my tears and was able to make my way down the hall to see Theo, one of the NICU nurses kindly handed me a tissue and said that it’s been a tough few days. I heard myself say, “It’s been a tough few years.”

I was really down.

When I got back to my room, my sister sent me a text that said she was amazed at our positivity when Emmy was in the hospital last year. She was impressed by our optimism and our faith that everything would be fine. She loved that we cheer-leaded Emmy along to good health. Emmy needed that positivity, and luckily it was radiating out of me.

But now it was harder for me to conjure up that positivity. I just felt completely drained. I guess I never thought I would need to harness that ability again. And I didn’t know how I was going to get it back.

Luckily, a wonderful friend called and talked me through it. She’s a very smart and solution-based person, and she’s also spiritual. All of it helped IMMENSELY.

One of the things that was difficult for me was that Theo’s numbers would jump around whenever anyone touched him or talked near him, including his mama. So I had to leave him be in order for him to get better. I felt so helpless. But my friend had a great suggestion, which was to ask for some of Theo’s swaddling blankets, sleep with them, and then give them back with my scent. That made me feel soooo much better. My spirits came back up, and Theo also started doing well.

So now it’s the slow and steady wait. He’s still on the ventilator, but he’s showing signs of progress. I’m sad and exhausted and still in pain from the C-section…but I’m also positive! I know he can do it. I can’t wait to have him home, and his sisters are SO excited to meet him. Emmy keeps saying, “Theo coming!”

Yes he is, Emmy. Sit tight. 🙂

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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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