Rain ready

These days I am often reminded of my first impressions of life in New York City. I think about the before and after as I got to know the city.

When I moved to New York, there were so many things I didn’t know. Learning about a day in the life has left me with some great memories The New York City ebb and flow of a rainy day is one of the takeaways.

IMG_1403
Rain or shine, out you go!

A rainy day in this city takes on a life of its own. Here is what I have come to understand:

New  York City is the place where umbrellas go to die. With most heavy rains come winds that feel strong enough that feel like you are walking on an angle. Almost all umbrellas are doomed to face an inside-out twisted fate. New York sidewalk umbrella etiquette is a serious sport. Umbrella style matters. When we first arrived I noticed that many people carried the Apt 5 brand that I thought must be chic, but as it turned out it was an umbrella from the local drugstore.

IMG_1380
By the end of the day there will be pile of dead umbrellas.

In my early days I was never prepared for a rainy day. I was caught more than once in a total downpour. On one particular day, after a walk home, I arrived soaked: shoes, clothes, glasses and all. It was messy. The woman waiting for the elevator was clearly unimpressed with my state. She, on the other hand, was wearing a raincoat, rubber boots and a hat, and carrying a nice umbrella (you can tell). It was a moment of understanding. To survive in this city, I would need to step up, embrace the conditions and work on my rain readiness.

I started to watch the New  Yorker umbrella culture more closely. Instead of owning one umbrella I could never find, I bought a few coloured ones (not the Burberry one I really wanted, but hey, we all need our dreams). That led to the need for an umbrella-holding vestibule just my style. I found it. It stands near the elevator, so I can grab an umbrella on days it might rain. I’m not yet a rubber boot owner, but maybe one day.

IMG_1429
Even the fruit stand umbrellas have plastic covering.

The get-to-the-train-in-the-morning umbrella crush is quite a site and nothing short of an Olympic event. There are golf umbrellas and some that seem the size of backyard patio umbrellas. The pretty coloured ones stand out among the regular black ones.

Five years later the sidewalk rules about whether you zig or zag, lift up or just keep walking are still not clear to me. I remember wishing I knew where to find NYC umbrella etiquette advice. And as a friend pointed out, we all do well not to have our eyes poked by the umbrella spines. You eventually come to accept that the umbrella-to-umbrella bump causes growls and grimaces. As I adapted, I began to throw my own scowl now and again.

IMG_1401
The umbrella congregation as people board the bus.

On every outing you come across the don’t-get-your-hair-wet people who remind me of my grandmother and her need to wear her plastic rain hat. These people are carefully looked after by doormen who hold umbrellas from the canopy to the car, making sure not a drop lands unsuspected. Don’t be too close when the bus door opens as it leads to many Mary-Poppins-like figures emerging umbrella first.

I have a learned a thing or two in my time here. Now, when people, who are planning a trip to New York, ask me what they need to bring, I can say a little smugly: “Don’t forget to pack your umbrella!”

Advertisements

To MWS siblings – with love

Sometimes the innocence, simplicity and pureness of life with a loved one who has special needs catches you off guard.

I can be busy doing something that involves all three of my kids when that look, a certain gesture or the sound of a soft voice grabs my attention. I can feel it before I see it and when I look up I want to take in and be a part of it, but discretely, in a way not to interrupt it. What I see is Kevin looking at Sarah or Scott with such pure love and adoration. I also see Sarah and Scott reaching out to let Kevin know that they are by his side. From moments like these, I am comforted to know that the bonds are deep and lifelong.

When Kevin looks at Sarah and Scott with his inside out smile, a laugh and usually a pretty tight hold, he is letting know them know that they are his people. I watch Sarah links arms with Kevin or tussle his hair. Scott will put a protective hand on Kevin’s shoulder. Kevin knows that he can count on them both.

These days, Mowat-Wilson families share many family memories on Facebook. One day recently when I was scrolling through, I came across a post that reminded me of my kids. The sister looked at her brother with such wide loving eyes and the brother’s hand over hers was recognizable to any MWS family. The similarity between this photo and many of ours made me wonder about sibling relations in other MWS families.

This Valentine’s Day, in celebration of siblings in our MWS families, I wanted siblings to know that the roles they play in their brother or sister’s lives do not go unnoticed. To honour it, please share this post with friends and family, and invite them to visit our MWS Foundation page to help raise funds and awareness about Mowat Wilson Syndrome.

From a young age, many parents of our families wonder about the kind of relationships their children will develop, even more so for MWS siblings because the sacrifices aren’t small. Yet, moments like we see here with Jonathan and Abby build the foundation for what is to come. You may not know that many MWS kids are very particular about being touched, so this head-to-head contact shows a trust and love that goes beyonds words.

12696597_10208052106436893_856221102_o

Meet Jethro and Gabriel. This exchange makes you want to laugh out loud. The intimacy of a brother holding onto your ear, and the other brother letting it happen, shows a familiarity and a willingness to make each other happy. Kevin likes to touch Vikas’s ear, so perhaps this gesture is the equivalent of blowing a kiss for our MWS kids.

1609861_219739944876634_1834647802_n[1] (1)

Fabian’s love for his big sister Laura means everything. Hanging on tightly to squeeze all he can from the moment, Fabien will push himself to do difficult tasks to please his sister. Laura, with her gentle, kind, and compassionate demeanor, helps guide and care for her brother. It means the world to him.

Ausflug  mit Fabi 020

Romane, like many of our MWS children, took time to learn basic tasks: how to eat, walk and hold a pen. Her big sister is always her favourite teacher. Along the way, Romane has taught her big sister ( and her whole family) about unconditional love and how it can affect the person you become.

image1

For Kevin, most of his happiest skipping moments involve being in the centre of some goofy act and having everyone in the same place at the same time. More precious as everyone gets older, Kevin somehow knows he has to hang on to the moment tightly, take it all in and capture it so he can enjoy it then and later by himself or with friends.

Sharmas Green Park London June 2015

Thanks to the families who shared their photographs and stories. I’m pretty sure we made people smile today. Happy Valentine’s Day!

Getting back with New York’s Achilles Club

It is common enough to hear people talk about giving back when they have a bit of extra time. Volunteering is a way for people to become involved in their communities, meet people, and help those who could use a hand one way or another.

IMG_1011
Achilles’ volunteers gather at Central Park.

As the mom of a child with special needs, I always admire the people who work and volunteer with the organizations that support activities for Kevin, both fun and therapeutic. Kevin would not participate in many of his activities without the generosity of so many good people who are there to share an activity that they love with Kevin and his buddies. It often occurs to me how much smaller Kevin’s world would be if we had not met such generous people along the way.

Spending time watching Kevin and his friends participate in one activity or another, you get to know the look on people’s faces, that shine in someone’s eyes, a bursting cheek-to-cheek smile, or an excited-sounding voice when a volunteer realizes how an experience is meaningful to them as well as to the person and/or the family they are supporting. I call it “getting back.”

Some organizations and the people who run them are so enthused by the work they do and the people they inspire, you can tell that this giving/getting back system is part of what motivates them.

I felt this enthusiasm when I encountered New York’s Achilles International back in the early fall. Established in New York by Dick Traum, this organization pairs running partners with people with special needs, from children to adults with physical and/or developmental challenges. A non-profit organization, this club trains runners, cyclers and volunteers alike. People come together for the pursuit, and soon enough make new friends, increase their confidence and find their athletic selves.

Kevin and Vikas meet Achilles founder Dick Traum.

A legend himself, Dick Traum was the first person to run the New York Marathon with a prosthetic leg in 1976. In 1983, Dick created the Achilles Track Club, as a way to share his experiences with other people with physical and developmental challenges. A non-profit organization, today the club is called Achilles International, and it boasts more than 10,000 members in 70 different countries.

Kevin and I went to our first Achilles race in September. Thomas, Kevin’s friend, was running the 5th Avenue mile, as part of the Achilles Kids club. Thomas was delighted that Kevin came to see him run and he was waving and smiling as he passed us by. Thomas’ running partner had a similar ear-to-ear smile, showing her pride in helping Thomas achieve his goal.

IMG_3042
Such a thrill seeing friends and family cheering while running down 5th Avenue.

Another Saturday morning, Vikas, Kevin and I went to Central Park Achilles to see the club run in action. That day, I met Matt. Matt was a volunteer that learned about Achilles Kids through New York Cares, an organization that pairs volunteers with community organizations in New York City. Once he started running with Achilles Kids, Matt caught on early to the getting back sense of volunteering. Talking about the runs, Matt explained how the feeling of running with his Saturday morning friends was “contagious,” and the perfect way start to any weekend.

IMG_1018
Achilles volunteers get ready for the morning run.

We also met Megan, the coordinator for Achilles Kids. She organized the volunteers and matched them with the runners. Seeing Megan in action from the beginning of the run to the end, it was clear that her enthusiasm and will alone could pull kids across the finish line of the Central Park reservoir. Vikas and I, and I think Kevin, all left the park that morning feeling like we too could become runners as the people around us were celebrating their abilities and accomplishments. We agreed with Matt. It was the perfect feel-good way to begin the weekend. Thanks Achilles!

IMG_1021
Megan’s enthusiasm makes the running fun for participants and volunteers alike.

 

Bella the Ballerina

Meet Bella. She is a 12-year-old girl who loves to dance and listen to music. For the second year in a row, Bella danced in the December 11th adapted performance of the New England Ballet Company and the Milford Connecticut Recreation Department’s Nutcracker Suite.

Bella and her smiley personality had two parts in the production. She shone as the Dew Drop princess and she was a snowflake in the production’s finale.
IMG_4752A dream of many young girls, dancing in the Nutcracker might not have seemed within reach for Bella, a young girl with Mowat-Wilson Syndrome. Bella, like other children with this syndrome, has significant developmental delays that result in cognitive and physical challenges. Without many spoken words, Bella understands much of what is said to her. This means that Bella comprehends more than people realize, so not being able to express her wants and needs can be frustrating.

Bella loves going to dance class. She is ready to go the moment her mom arrives home from work. During the class, volunteer dancers from the New England Ballet join the Milford Rec Adaptive ballet class. Two years ago, the program started with only a few kids, and today, the program has grown to four classes a week, each with about 10-12 students.

The program is inspired by a mom with a son who has special needs. Like this mom, Bella’s mom, Laura, knows that giving her daughter the opportunity to participate in this class and become involved in the community is critical to her self-esteem and sense of belonging.

Bella’s mom was proud to tell me about her progression: “When Bella first started ballet classes, she couldn’t follow any directions. Her processing time was so slow that she would mostly watch the class. Now, we see her making some of the movements, trying to imitate the mentors, and working so hard to do it. Her improvement in the period of two years is amazing!”
IMG_4807During the Nutcracker, Bella danced with her mentor. While onstage, she was smiling, jumping and waving to the crowd. She loved every second of it.

Bella’s costumes were lent to her and the other performers by the New England Ballet Company. Being dressed up as the Dew Drop Princess was a special moment for Bella. Bella’s glow that day showed not only how pretty she felt in her costume, but also an awareness of what she had accomplished.

When the show was over and the performers were taking their bows, Bella signed “more” by tapping the tips of her fingers together, a sure signal to her mom and the audience that she did not want the moment to end.

As a parent of a child with special needs, you know that your child will learn so much when involved in the community, but what is easy to forget is what people around them take away from the experience. During the performance, two of Bella’s school friends kept her company backstage and helped her change into her costumes. With this help, Bella’s family could watch the show uninterrupted. When Laura went backstage for a quick check on Bella, she could see the patience, compassion and understanding that Bella’s friends showed her daughter, and how important that made Bella feel. To other people watching these interactions, the pride Bella’s friends felt in helping her participate left its mark on them as well.
IMG_4775For Bella’s family, the experience of Bella participating in the Nutcracker was beyond exciting. Watching the preparation and the actual performance unfold on Bella’s mom’s Facebook, her excitement was obvious, as was her pride in her daughter and her community. When I asked Laura about her experience watching Bella onstage, she said, “You could feel the flow of love and compassion from the people in the audience.”

Bella will continue to dance. People will be mesmerized by her spirit and love of ballet. Bella’s mom characterized her daughter in the best way when she said, “(Bella) you used your special abilities to shine and to be a part of something magical.”

 

Written by Kathy Bell and Laura Chrysostomo.
All rights reserved.

Extra-ordinary

Extra-ordinary is a new series that tells the story of an achievement in the life of a special person.  This series will celebrate people who work extra hard to do the ordinary things that many of us take for granted. Together, I want us to get to know a group of extraordinary people whose abilities triumph the challenges they work to overcome every day. They conquer life often against the odds. From them we can learn about life and perseverance and determination to make the most of everyday.

If you know someone whose story needs to be told, send me an email at kathy.bell24@gmail.com or get in touch through asharmedlife.wordpress.com

My blog reading lately has been filled with stories of people that I find amazing. Through these blogs and social media posts, I feel I have come to know a group of people, with their families, who fight to make sense of their situations and to find that better path for themselves and the people who will follow after them. Perhaps it goes hand in hand with welcoming a new year, but it encourages me to continue to tell Kevin’s story and the stories of others whose accomplishments must be celebrated.

Most of storytellers wouldn’t know how their words have reached me, and most of them I have never met. Their journeys are difficult, and I want them to know that they did not go unnoticed. Reading these stories, I feel like I have a met a group of the most extraordinary people. Thanks to Humans of New York, The Mowat-Wilson Syndrome CommunityThe Caregivers’ Living Room, Phoebe Rose RocksWords by Julie and WAVE Ottawa for allowing me and others to get a glimpse of a day in the life.

Get in touch if you know of someone who has a story that should be told. Share these stories with your friends and family as a reminder of people’s strength and spirit and to acknowledge that the world is full of people we need to get to know.

Here we go!

 

 

Getting ready

Last week was Kevin’s first day of his last year of school. Kevin is in his twenties now, so it has been a good run.
IMG_2994

As I am thinking about “lasts,” I can hear myself remind the kids to live where you live and enjoy being in grade 8, thirteen, or whatever the case may be. I believe these words and try to remember to live this way. Having moved to new cities more than a time or two, I know how to live this way.

Yet, there I was. I woke up that morning thinking that September 9th was Kevin’s first day of his last year at school, Scott’s first day of his last day of elementary school (grade 8) and Sarah’s first day in a year where she would not go to school at all. It guess it’s a mom thing.
IMG_3009

Kevin not going to school has always loomed large. He loves school, so telling him it’s coming to an end feels like not the best news. We wrestle with when to talk to Kevin about it and what to say.

I usually think I have a good idea about what Kevin thinks about one subject or another, but about this one, I’m not so sure.

At the end of last year, three of Kevin’s friends finished school. The Rebecca School had a graduation ceremony to honour their achievements. Someone from school recorded it for Kevin and he watched it over and over again.

Kevin’s friend Sam gave a speech, and his words brought the house down. Judging by the number of times Kevin played the speech, Sam’s words were important to Kevin.
IMG_3010

Fast forward to Labour Day weekend. Kevin and I are enjoying a last summer swing at the cottage. We were talking about coming back to New York and getting ready for school. Kevin was reminding me by pushing the iPad button 20 or 30 times that he was looking forward to riding the school bus. I take the moment to remind him that this is his last year of school and he won’t always ride the school bus.

Kevin looked at me intently. I could tell he was thinking about what I had said. He flipped a few pages on his Proloquo2Go iPad app, and confirmed: Graduation, Party.

These Kevin moments make me laugh. No need for my thoughts about how to break the news to Kevin. He is getting ready. As for Vikas and I, we are getting things ready for Kevin too.

As the next year is filled with lasts, I will remind myself to take a page out of Kevin’s book. No need to worry. Just plan a party! It will make me smile every time.
IMG_2998

Fifty years in the making

On September 4th, 2015, my mom and dad celebrate their 50th wedding anniversary.

Doug and Jane wedding photo
September 4, 1965

To mark the occasion, we had a small garden party in their backyard. It was a day full of memories and laughter, summer flowers and colourful decorations, videos and old photographs, a pretty cake and special toasts, and a board of fancy tea sandwiches.
Bells-28

Here is the clan. We were short two to be our full group, but everyone that could be was there.
photoI was “nominated” by my siblings to welcome people and make a toast on behalf of the immediate family. I had practiced all week and I knew what I wanted to say, but when the time came, what emerged was more nerves and emotion than the toast I had planned.
CS7XiusasqyTZTdG8pX0qvoqiXrM4PbQ6E001B_YXTE,kkQbpje9UEL7uRX-izkGNRI9sHNGkE2fohY1R2sLB8U

If I was to try again and give words to what my parents’ 50 years means to me, here is what I would share:

Having been around for many of those 50 years, I have come to understand that 50 years of anything is a really long time. Yet, when you get to that point and look back, you can’t imagine that so much time has passed so quickly.

Planning the party, I realized I didn’t know as much about my parents’ wedding day as I would have liked. Between my mom, and her friend Dorothy, I learned a few things along the way.

The wedding was a fun day. My mom and her friend Dorothy, the maid of honour, made their dresses and their hats. With my mom’s nod, Dorothy also credits herself with setting up the first date, convincing my dad to ask my mom to house party when they were 16. In Dorothy’s words, “they were an item ever since,” and that was 56 years ago, four children and nine grandchildren later.

This journey started when they were young (younger really than they wanted to tell us when we were that age). From it was built a family (four kids) in the space of 10 years, along with life in a small Ottawa-valley town, an African village, at the cottage on the lake, and later in a city we learned to call home.

With many happy, fun-filled days also came those days that test you to the core. With the party guests in mind, it occurred to me that many other couples and families could tell a similar story.

Yet, from this life experience, I have come to know and admire this group’s sense of wisdom and their appreciation of friendship and being there for one another. Hearing the jokes and the “remember when” stories, I hoped that the party memories created for my own children that day, and for my nieces and nephews, involved a glimpse into the full life of their grandparents and a sense of the value of lasting relationships with family and friends.
Bells-72I hope the photos give you an idea of the celebration of the day:
5yQuk1GCk8jFQTGCqpkuZn9JgpqKQ4DNXvscHAqpLdY 3MGwnzhd_YlXWb2jilb0cXvfwZVb8bPMMZgWenwJrjo,bIahRVjBHEeOtwOe1cbTC0ZNKZ93xN5Wng7vxO02yxo

Happy anniversary mom and dad! We wish you good health, much happiness and many more years to come!