Category Archives: Special Needs

In Love

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Love

I learned something really incredible over the past three weeks. I am so in love with this kid.

I used to think it was weird when people said they were in love with their kids. It seemed like a strange turn of phrase. I used to think that we are in love with our spouses or partners — but we love our kids.

I found out what it meant to be in love with my oldest child when Charlotte turned 1 year old. That’s when I felt it for the first time. She turned from a little baby into my little buddy. She was fun to interact with, and I saw her personality start to emerge. I remember taking pictures of her eating blueberries outside on the grass. She put a play phone up to her ear — upside down. And, as I snapped away, I thought, “Wow, this is it. I am in love.” I finally understood what that phrase meant.

With Emmy, the road has been different. I was overwhelmed with a lot of information early on that scared me. She was only 5 weeks old when I found out that she has Williams syndrome, and I was really intimidated by what that meant for her future and ours. And then there was a lot of work to do. We had to arrange doctors and call physical therapists and organize medical bills. There was a lot of stuff getting in the way of my connection with my daughter.

These past three weeks have changed everything. When her heart stopped beating and the doctors were trying to save her, all of the other stuff disappeared. I was so purely connected to my daughter, and I wasn’t even in the same room as her. I couldn’t even see her. The doctors and nurses were inside her room, trying to save her life. And I was in the hallway, kneeling on the floor and sobbing.

But the other thing I was doing was talking to her. I named all of her favorite toys and activities. I named family members. I named friends. I begged, “Come back. Come back to me.” There must’ve been twenty people between us and around us, but I felt as though it were only the two of us. That connection, that bond, was so strong and so pure.

As special needs parents, and parents in general, we have many hurdles to overcome and struggles to deal with. Over the past two years, I felt that stuff getting in the way of a pure connection to my child. It felt like baggage, and it was heavy.

Being in this position with Emmy made me realize that I need to focus on keeping a pure connection to her. Yes, she has special needs. And it is important for me to help nurture those needs. I actually love that she has Williams syndrome. The diagnosis has brought many, many wonderful qualities with it. And I love so many of the people I’ve met that Emmy has brought into my life — caring doctors, incredible nurses, excellent therapists, sweet teachers; supportive friends. I would never have met them otherwise.

But, at the end of the day, when I tuck her in at night, the only thing that matters is that Emmy is my daughter and I’m her mom. And that connection is so very strong and pure.

I am absolutely, head-over-heels in love with her.

Meant to Be

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MeanttoBe

It’s Williams Syndrome Awareness Month, so yesterday we met up with a bunch of other families for a beautiful walk to raise money and awareness.

We were at the same walk last year, which made me realize how much Emmy has grown. Last year, she was a baby, so we pushed her along in a stroller while she snoozed. I remember looking around at the other children who had Williams syndrome and just taking it all in–trying to figure out what my little girl would be like. I had read all the literature, but I still didn’t know what to expect. I still didn’t fully understand what the diagnosis meant for Emmy and for our family.

My experience has been that I can read all I want but, until I’ve lived it, I don’t truly comprehend it.

This year, Emmy wasn’t snoozing. She was dancing and laughing and eating burgers and tackling her sister and giving hugs and trying to make friends. She’s just so much fun to be around.

By all accounts, Williams syndrome is a completely random genetic occurrence. It could happen to anyone. I think the word “genetic” can be misleading because it sounds like we had Williams syndrome in the family prior to having Emmy. On the contrary, I’d never even heard of Williams syndrome! It was a total shock to everyone.

But spending time with Emmy over the past 1.5 years has made me wonder…

Was this really random?

I can’t help but think that this was meant to be…

She has taught me so much about myself and others. I’ve learned that I’m much stronger and more capable than I ever thought. I’ve learned that other people, whose brains are wired differently than mine, see the world in a special way. And, best of all, I’ve learned much more about what these words mean: love, acceptance, and authenticity.

And one more thing…

Before Dan and I had kids, we talked about what we wanted for their future. Because we’ve both been painfully shy in the past and had to work hard to push through that, we had only 1 wish: That our kids would have social personalities.

When we found out that Emmy had Williams syndrome, we immediately looked it up online. And here’s what we saw:

People with Williams syndrome have “highly social personalities.”

Gives me chills every time I think about it.

Yes, it was meant to be.

Going to the Chapel

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Goingtothechapel

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

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

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

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

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

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

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

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

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

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

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

Knock Knock

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KnockKnock

I’m always curious about how much Emmy understands. She only says a few words, but she probably comprehends much more than I realize.

When I’m driving the kids to school, the car is full of Charlotte’s animated chatter. Every once in a while, Emmy will catch a word she knows and shout it out: “EAT!” or “NAP!” or “MOO!”

This morning, we were making up “Knock Knock” jokes as only 3 year olds can.

“Knock knock,” Charlotte would start.

“Who’s there?” I would ask.

“Banana.”

“Banana who?”

“Banana on your head! HAHAHAHA! Isn’t that funny, mom?”

Charlotte and I went back and forth with our jokes, each more nonsensical than the next.

Emmy sat quietly, watching our banter in the car mirror. Listening to every word–every giggle.

When we arrived at school, I took Emmy out of her carseat and gave her a kiss.

She smiled secretively, curled her little fingers into a fist, gently rapped my shoulder, and said, “Knock knock.”

Don’t Apologize to Me

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Dontapologizetome

I was in a store the other day, just browsing and in my own little world (as I usually am). Every few minutes, a loud, deep voice would burst into my reverie. I kept trying to ignore the intrusion but, finally, I glanced up to see a teenage boy (probably about 17 years old) who was making throaty noises. He was trying to get his mom’s attention. He would shout a word or two and then make some more guttural noises. He would sporadically run down the aisle and then back again. My first thought was that he was just being a rowdy teenage boy, and my second thought was that he had special needs.

I glanced up at his mom who was in her fifties and looked tired. She had a very loving nature with her son. She answered his requests with patience and kindness. But she was also very aware of their surroundings. She kept gently saying, “Shush” and “Not so loud” and “Please be quiet.” I imagined that, at home, she couldn’t care less if he makes loud noises. But here, in a public place, I could sense her discomfort. She might have been worried that someone might give her dirty looks for not “controlling” her son. She might have even been scolded by complete strangers in the past.

The mom looked at me in an apologetic way. She wanted to let me know that she was sorry for all the noise.

And I really felt for her. I’ve changed so much since having Emmy. My level of empathy has increased immensely. I could put myself right into this woman’s shoes and feel the hot stares from strangers. True, I haven’t been through her exact experience. Emmy is still at the age where any acting out would be considered typical behavior for a toddler. (And she’s actually pretty mellow so far. When in public, she enjoys just looking at everyone.)

But now I understand that everything isn’t what it seems. Everyone comes from different circumstances, and we never know what another family might be facing. One person might see a mother’s inability to control her child, while another might see a mother’s steady patience with her son who has special needs. Frankly, I wanted to hug her and tell her that she certainly didn’t need to apologize to me.

But, because I’m shy and definitely not one to intrude on personal space, I just smiled timidly and offered to help her find what she was looking for on the shelves.

Green Bagel Morning

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Greenbagel

My husband, Dan, loves traditions. Two years ago, he decided that green bagels on St. Paddy’s Day would be a tradition. He’ll dutifully go to multiple bagel places and wait in long lines (something I am far too impatient to do). Charlotte loves it. Emmy is still too young to understand the tradition, but she does appreciate a good, green bagel.