Wednesday, October 28, 2015

See ABILITY in disABILITY

Easter Seals NL is now offering a really cool t-shirt as a fundraiser to support their life-changing programs and services for persons with disabilities. The shirt says "see ABILITY in disABILITY", which is a message that I strongly believe in!

Things are changing in our society because people are working hard to change stereotypes, to recognize abilities and to tear down walls of discrimination. We are creating a culture that fully accepts and includes all individuals, regardless of ability.

My son, Brennen has been involved with Easter Seals since he was very young. He has participated in the Music Therapy program, swimming and Summer camps. We take part in family events and holiday parties. We have met many friends and made some wonderful connections with families through Easter Seals, and though the needs of our children may be different, our wants for them are the same. We want them to be happy. We want them to know joy and love and acceptance. We want them to flourish.

"Easter Seals NL is a charitable organization that has operated in this province since 1937. Since then we have tirelessly dedicated ourselves to engaging, inspiring and empowering persons with disabilities through life-changing programs and services.

More than 1500 people in our province live with disabilities such as spina bifida, cerebral palsy, muscular dystrophy, amputation, and other conditions that seriously limit their mobility and present barriers to full participation in society. It is our mission to tear down these barriers and build an inclusive Newfoundland and Labrador."

See ability in disability. See the difference; be the difference. It is time for change.






Join with us in raising awareness and creating more opportunities for individuals with disabilities, and greater support for families like mine.

Order a shirt from Easter Seals by contacting kirk@eastersealsnl.ca, or samantha@eastersealsnl.ca or online at http://tinyurl.com/pbccy8c 

The American Apparel Fine Jersey T- Shirt is available in Charcoal, Cranberry and Navy. Get yours in time for the Holidays!


Thank you for supporting Easter Seals!

Saturday, October 24, 2015

Terry Kelly: The Power of the Dream

If you were to ask a Newfoundlander if they know who Terry Kelly is, most would say "Is he the blind guy who plays guitar and sings that song about Remembrance Day?"

It's true, Terry Kelly is a Newfoundland-born singer, songwriter, and composer of "A Pittance of Time", the powerful song that circles the globe every year around November 11th and pays tribute to veterans, peacemakers and heroes. Many may not know that Terry is also an accomplished athlete. He was a member of the Canadian Track Team that competed in the 1980 Paralympics, and he was the third blind person in the world to run a mile in less than five minutes! Terry has completed countless triathlons and road races including the 2015 Tely 10 right here in St. John's.

In March 2014, Terry joined two other visually impaired adventurers who journeyed by horseback on a 3-week guided expedition in Argentina. The group travelled into the heart of the Andes as part of a vision quest documentary, "Blind Spot; Moments Unseen". The film chronicles a voyage of self-discovery and expands our perspective on what we see, what we can't see, and what we overlook.

Terry is blind as a result of hereditary cancer called retinoblastoma. When he was a very young child, he had both of his eyes removed. He has two brothers, a sister, and a son who have also lost one eye from the disease.

Terry was recently invited to be the keynote speaker for the RE/MAX Cape to Cabot Speaker Series, and I was very excited to attend his presentation!

Cape to Cabot is Newfoundland and Labrador's premier road racing event, beginning at historic Cape Spear, and finishing at Cabot Tower in St. John's. The race is very popular among serious runners, selling out every year well in advance of the start date. The 20 km course is one of the toughest they will ever face, but covers some beautiful and historic ground along the way.

I arrived at the Marine Institute on October 17th, along with 450 runners who were picking up their registration kits. I quickly realized that I was most likely the only soul there who was NOT in the race, and so I made my way to the Hampton Hall Lecture Theatre, feeling totally inadequate, but excited to take in Terry's presentation!

It wasn't long into his talk that I realized I was in exactly the right place.
I was exactly where I needed to be at that moment.. at this moment in my life.

Terry’s “Celebrate Life through the Power of the Dream” presentation is about individual triumphs, overcoming real or imagined disabilities and having respect for oneself and others. Terry believes that it is important to consider mistakes as opportunities to learn, and he is convinced that believing in yourself is the key that will open doors to a rewarding and successful life.

Terry shared many of the tools and skills he uses to transform challenges into gifts and how to use those gifts to inspire individuals to motivate and help themselves and others.


Terry shares his message through words and music, captivating the crowd with several of his original songs that day. He sings as if he's telling a story, and I swear his voice was the only sound on the island at that moment.

Terry talks about "Dream Adjustment". "I had a dream to play hockey, and I didn't think it could be." He told the story of how he learned to play hockey as a young student at the Halifax School for the Blind in Nova Scotia. They used a tin can instead of a puck, so they could hear it, and they put buzzers on the nets to know where they were. He says, "Throwing away the puck and embracing that tin can wasn't going to put me in the NHL, but it brought me thousands of hours of joy playing hockey with my son, and playing hockey with my friends. I was a hockey player. I am a hockey player, because of that little dream adjustment."

He asked the audience to think about our own lives, and where we might be depriving ourselves because of what he calls 'excuse-itis' - because of age, because of our jobs, because of whatever. "Please don't deny yourself, don't let your dreams be taken away. It's only you, and only me who can stop ourselves from enjoying what we want to enjoy. Our subconscious mind is stopping most of us from doing a lot of stuff that we want to do. There are ways to do the things we want to do, just maybe with a dream adjustment." 
 
He talks about discovering our purpose, taking care of our bodies and being balanced from a spiritual, mental, social, emotional, physical and financial perspective.

"Typically, we need to have other people with us and around us to support us, to love us, and to share with us our goals and the things that happen to us in life, but if we don't start from right here, if you don't start with you, nothing happens."

The Power of the Dream is intended to encourage people of the world with or without eyesight to review how we see ourselves; in short, so that we might respect and celebrate our differences.



"Changing what it means to be blind. 
Step by step one day at a time.  
Still much to do but it shall be 
That the sighted eyes of the world will be able to see
And there will be changes."

I know that personally, since becoming the parent of a child with special needs and entering into this world of 'disability', my eyes have been opened to the broad spectrum of beauty, the value of uniqueness and the common thread that binds us all, regardless of ability. I care more, and not only because I have a child who connects me to this greater community, but because I have learned from individuals like Terry Kelly to see people for their hearts, their capabilities, their spirit and their determination.

Terry's love of life is contagious, and so is his positive outlook. I learned a lot from him that day. I learned that we are not defined by our titles, by our abilities, or by what we think people see. We are defined only by who we are inside, and how we use our gifts and our abilities to improve our lives and to affect others. 


Terry, you are truly an inspiration. It was absolutely an honour to meet you, and I look forward to seeing you again when you are back in town!

This article also appears in The Telegram, HERE

Friday, October 23, 2015

The Changing of the Seasons

"Life starts all over again when it gets crisp in the fall."  - F. Scott Fitzgerald, The Great Gatsby 
 

I think it is safe to say that Fall has officially.. fallen here on the East Coast, and I couldn't be more excited! I love this time of year! The mornings are darker, the afternoons are crisp and the leaves are changing on a daily basis. The temperature is dropping steadily and sweaters are making their way to the front of my closet. It's the season for tights and boots, plaid scarves and wool blankets, and all things brown and orange and cozy and warm.

The turning of leaves is one of the most magical things about living in this part of the world. Life gets so busy, and it can be easy to take it for granted, but I really do enjoy a scenic drive this time of year to marvel at how many different beautiful colours there are in nature. And the smells, and the sounds - there is nothing quite like a crisp Autumn day and that satisfying crunch when you walk through a field of Maples and Oaks, or the way the leaves dance in the air as you kick through piles of them.

We have been enjoying the changing of the seasons. We've been to the farm (a couple of farms, actually). We have selected our pumpkins and they are ready for carving. October seems to be a really busy month for us, with jam-packed schedules and activities, and while the shops seem to have skipped ahead to Christmas already, I am wishing things would slow down just a little. I love this time of year, and I want to be able to enjoy it! It won't be long before there is snow covering the island, and we will be wishing it was 12 degrees again!



This year, we have a brightly painted teal pumpkin on our doorstep, just like we did last year.
It's part of the Teal Pumpkin Project. You can read about it here - http://www.throughthetulips.ca/2014/10/the-teal-pumpkin-project.html


Offering a selection of non-candy treats is a wonderful way to make sure that ALL children have a Happy Halloween!


Monday, October 19, 2015

Wishmaker Walk for Wishes

Wishmaker Walk for Wishes is the Children's Wish Foundation's annual signature event held in hundreds of communities across the country. Thousands of Canadians participate in a fun, family-oriented day with one goal in common: to raise money so that children living with a life threatening illness or life-limiting disability can be granted their most heartfelt wish. 

On October 18th, I joined several wish-families and many supportive community members in a Wish Walk in Conception Bay South. The walk started at the Manuels River Hibernia Interpretation Centre and ended with a celebration at the Royal NL Yacht Club.


This particular Wish Walk was organized by Paula Bowen of Topsail. Paula's ten year old son Brandon was granted a wish in 2013, and since then Paula has been highly involved with the Children's Wish Foundation. She organized her first walk last year, and raised over $6000. An average wish will cost $10,000, so her goal this year was to raise $10,000 to be able to grant another child's wish!

Brandon entertaining the crowd after the Wish Walk

Brandon was born prematurely at just 27 weeks, weighing two pounds and four ounces. Within a few days of his birth, doctors noticed hemorrhaging on his brain, and as a result, Brandon was diagnosed with cerebral palsy. He spent 102 days in the ICU, and has since endured a number of quite extensive surgeries.

Brandon's wish was to go to WWE WrestleMania 30 in New Orleans! The WWE is the largest professional wrestling promotion in the world, and it has long been a dream of Brandon's to see his favourite wrestlers in a match.

Paula says that Brandon's trip was the first time they were ever able to go away somewhere as a family that wasn't for medical reasons. Brandon and his parents spent five days in New Orleans watching wrestling matches at the Mercedes-Benz Superdome, where Brandon also got to meet over 30 of the wrestlers - his favourite being John Cena. The Bowens didn't know for sure if Cena was going to be there, but Brandon was hopeful!

Paula says, "When John Cena walked into the room, Brandon went nuts! One of the volunteers told us he had never seen a child's reaction like Brandon's." She says, "Cena did a bee-line right over to Brandon because Brandon was going crazy in his wheelchair! He was all dressed up in his John Cena gear!"


Watch this video of memories from Brandon's wish trip to WrestleMania!!




"We were the only wish family from Canada that got to go to this event, and the Children's Wish office here worked extremely hard to make this happen. We didn't know until a week before we got picked to go, so we had to prepare Brandon that he might have to go to another wrestling event. We were very, very lucky to get to go!!"

Brandon received a personalized plaque, and even traded wristbands with his idol, John Cena. He still wears the lime green wristband, that bears the words "hustle", "loyalty", and "respect".

Brandon says, "It feels awesome to wear something that belonged to him. I always wear it, pretty much. Every time I look at this, it means that I can never forget WrestleMania!"



Last year, Brandon wrote a poem called "Wishes in the Air". It highlights his positive attitude and his optimistic outlook on life. Brandon's wish was granted by the Children's Wish Foundation, and it had a profound impact on him. He has hopes and dreams for his future, like all kids his age.
As a parent of a child with cerebral palsy, I remember crying with the news of my son's diagnosis because I thought my dreams for him had been shattered, but that doesn't have to be the case. Brandon, I know that you will do big things, great things, because anything is possible. Dreams do come true and wishes are granted when people follow through with their passion to help.



Thank you to everyone who joined us for the Wishmaker Walk and for helping to create the magic of a wish for thousands of Canadian children and their families. There are 19 Wish Walks across the province of Newfoundland and Labrador this month. Find the one nearest you, and get involved! Help raise funds while meeting some of the most dedicated and inspiring people. You won't be disappointed!  http://wishmaker.ca

Tuesday, October 6, 2015

Children's Wish Foundation - More Wishes, More Wonders

We all have hopes and dreams for our children. We want them to be happy and healthy. We want them to be confident and courageous, and full of wonder. We want them to know kindness and grace and to live life fully, and we want them to be surrounded by unconditional love and happiness. This is perhaps our greatest wish. Almost everything we do as parents is motivated by a desire to see our children happy. 

And our children have wishes of their own. Whether it be to play on a field with their favourite athlete, or to meet a famous singer. It might be to travel to another country, to visit the Princesses at Disney World, or to star in a music video. All children have wishes, and when a child has an illness or life-altering disability, making their wish come true can have a profound impact on their well-being, helping them to feel better emotionally as well as physically.

The Children's Wish Foundation of Canada is the largest all-Canadian wish granting charity dedicated to granting wishes to Canadian children between the ages of 3 and 17 who are diagnosed with a life-threatening illness. For more than 30 years, Children's Wish has worked tirelessly to grant heartfelt wishes to more than 22,000 children and their families.

This year, the Children's Wish Foundation of Canada expects to grant over 1000 new wishes across the country with the help of volunteers and generous donors; that is approximately three wishes each and every day, all year long. 

Recently, Children's Wish has broadened the range of children to whom they grant wishes. Eligible children with life-threatening illnesses now include those with serious genetic and neurological diagnoses. These conditions represent an emerging population who may not have survived 10-20 years ago. Advancements in medicine mean that these children are now surviving, but are left with incredible challenges to their health and quality of life. By creating unique and meaningful experiences, the Children's Wish Foundation enhances quality of life for these courageous children and their families.

Dr. Jeremy Friedman cares for countless children as Associate Pediatrician-in-Chief at Toronto’s Hospital for Sick Children. Dr. Friedman also reaches out to children with life-threatening illnesses in another way, as a medical advisor for the Children's Wish Foundation of Canada.
Dr. Friedman advises on wish eligibility criteria and played a crucial part in helping Children’s Wish expand its mission to include children with serious genetic and neurological diagnoses, like severe cerebral palsy.

“These children need 24-hour care and are usually in and out of the hospital,” Dr. Friedman explains. “The impact on these children and families when they experience joy, laughter and happy memories is just as big as any wish Children’s Wish has ever granted.”

Please watch this touching video, as Dr. Friedman talks about their expanded wish granting efforts:


I was contacted by the Children's Wish Foundation's national office, and am very excited to have started a new working relationship with them as a 'Wish Ambassador'. I will be writing for the organization regularly, covering events, fundraising activities, and featuring the stories of children who have been granted wishes. I will share the power and the magic that a wish can hold, and describe its impact on the lives of children and their families.

It is exciting to know that children like mine, and like so many of the little ones we know and care for now meet the criteria and are eligible for a Wish. Children who have medical complexities, who have care needs that are significant for the entire family, and who have chronic life-limiting conditions now have the opportunity to do something together as a family, and make wonderful memories without the focus being on the child's medical condition.

"If you think about the impact of that on the child and on the family, I think you have to come away with thinking who could possibly be more deserving of a Wish and an opportunity to create something positive, some hope, some positive memories and legacy than this particular group of children.", said Dr. Friedman.


For more information on the Children's Wish Foundation, or to refer a child, visit http://www.childrenswish.ca/

This article also appears in The Telegram, HERE.

Thursday, October 1, 2015

This is Real Life

This was one of those days where it just seemed like nothing was going right. We had plans to take Brennen out for the afternoon, to pick strawberries and to enjoy the last of the warm Summer sun, but he was having no part of it. It was just too sunny, or too windy, or too something

There are some days when I am harshly reminded that my life isn't going anything like I had imagined it would. I remember being a young girl and playing "house" with my dolls, pretending they were "the perfect family" - a generic Mommy and Daddy, a little boy who loved cars and trucks and a girl who practiced ballet. Both children smiled in photos, and they drove a funky convertible.

I think there is a point in parenthood (special needs or not) when you realize that nothing is perfect and that every day you wake up there will be challenges. Real life is so much more complicated and challenging / beautiful and rewarding than I could ever have imagined it would be. 

I am blessed with two great loves - Andrew and Brennen, and we have a family that transcends anything I could have dreamed up as a child. Sometimes life is hard. Not because we're doing it wrong, but because it's supposed to be hard. This is real life. Sure, we don't drive a convertible, but we have a pretty cool wheelchair van, and we are enjoying the ride!


 Thank you to Andrew Smith for these beautiful photos!