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.

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.

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.

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.

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.

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.

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.

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.

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!

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.
A 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!”
During 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.
For 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 Community, The Caregivers’ Living Room, Phoebe Rose Rocks, Words 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!