Christian Jang Barrett was born January 6, 2009. Dr. David J. Barrett, a family physician was first to observe that Christian J. Barrett was unique. However, to ensure proper diagnosis, he referred Christian to paediatrician Dr. Percy Rajchgot who then referred him to Dr. Wendy Meschino, Chief of Genetics and Program Medical Director at North York General. Dr. Meschino recognized the symptoms and quickly diagnosed Christian with Williams Syndrome on March 16th, 2010. Christian Barrett is 5 years of age, and has a brother Liam Barrett who is 3 years of age.
Realizing all children are direct gifts from God, the birth of Christian has opened my eyes to a new world, with novel challenges filled with medical specialists, doctors, therapists and friends. Often, when Christian and I drive through rural Vaughan, we tend to pass by scores of cyclists. Christian would always enthusiastically exclaim, “Daddy do that!” and insist that we stop to see the cyclists whiz by. Time and time again, the cyclists enthralled him and this led me to pick up cycling as a hobby. Christian is my sole inspiration to create the Ride 4 Williams Syndrome, where action in motion makes a difference over thought. After riding the Ride for Karen in Vaughan last September 2013 – the idea to create this ride was born to engage and help this very special group of children and adults.
After adjusting and coping with all the changes of having a child with a disability, one is the witness to a challenging but at the same time remarkable road map to explore unknown territory: a world of medical doctors (MD’s), specialists, physiotherapists (PT), occupational therapists (OT), speech therapists and additional support professionals.
One such speech therapist named Marlene Green shared this poem to build hope for all parents and caregivers, titled “Welcome to Holland” by Emily Perl Kingsley.
WELCOME TO HOLLAND
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
c1987 by Emily Perl Kingsley. All rights reserved
SickKids Foundation is the perfect partner, as it supports genetic research that benefits all children worldwide. SickKids Hospital is an excellent, world-renowned hospital that provides accurate medical diagnosis, pristine treatment and vital support, all of which is required for children with Williams Syndrome. On top of this, SickKids is engaged in genetic research for Williams Syndrome as well as other rare genetic conditions.
With every pedal and drop of sweat, let us ride to make a difference for our most precious gifts both today and in the future: our children! Be the difference; create the change with every breath and stroke as we ride together raising funds for Williams Syndrome Genetic Research at SickKids Hospital in Toronto.