My Christmas this year...Remembering the Gift that was Shane, and how he continues to give....

Ganges Harbour, Salt Spring Island, December 2009

The season is upon us, and no matter how hard I tried to outrun the holidays this year, I’ve resigned myself to the fact that they are here, they will arrive and carry on as always for the rest of the world, and I need to take the steps that feel right to make it bearable. I have broken down on many fronts. I purchased a small, 24” Christmas tree that sits in the corner by the living room window. Cecil collected greenery to make a wreath for our front door, and the left over holly sits in vases on the tables. We even found that an ancient string of lights around the patio doors work…although there are many holes in the chain….they reflect our hearts in that way. We’ve attended open houses at Salt Spring Cheese to sing carols with Valdy and drink apple cider, we’ve attended choral presentations in churches where we don’t know a living soul, and we’ve sent off the gifts and handmade cards to those back home who we’re missing dearly.

This time of year so heightens the longing that Shane were here by our sides, and although nine months have passed, I don’t miss him one bit less. My heart aches just as deeply, and at moments almost more so than it did in the early days after his death. As far as I’ve travelled from home to distance myself from some of the heartache of loss, I cannot distance myself from the love I have for the son who is gone nor the continuing reminders of the gift that was his life. And that’s the good news, because for whatever else my purposes in this world may be, I know that one of the most critical ones is to remain the keeper of the lessons he provided, and the promoter of the gift that was Shane.

The holidays feel like the right time to remind myself and others of the places and people we’ve been able to touch because of and since the time of his death. Each one is another opportunity for someone, somewhere to know that he was here, and that he left us all a little bit better for having been part of our worlds.

As I’ve mentioned before in posts, Shane taught us all about the importance of inclusion in our regular school systems. I saw over and over what a difference the opportunity to be part of things made in his life, but his death has taught us other things. His death has taught us of the differences his participation made in the lives of those around him. The cards, and emails and notes I’ve received so often in the months since his passing, are testimony to the fact that he started ripples in the world, that we may likely never know the extent of. The people who chose careers in medicine because of him, the people that chose to dedicate their lives to working with other children with his needs, the people who are just better and gentler because of the effect he had. How many of those people will touch other lives and have the ripple continue I wonder. There are lots of things that we’ll never know, but here are a few that I do know for certain.

His experience is being documented in a book that is being written by Community Living where those people touched will be able to share how, and hopefully encourage others by those lessons learned. It’s sad but true, that had Shane not died when he did, we may never have learned many of these things, and maybe that’s all part of what happened and the reasons for it.

There’s also the support I’ve received for the Shane Dickson Memorial Fund, where we are looking for ways to not only recognize the students that he was educated with for their roles in promoting inclusion in their small corner of the world, but I hope that as it continues to grow, we can look further than that. I see that starting to happen as the cd and house concert proceeds continue to add up.

The My-Tobii communications device we waited so long to find.

Then there’s the communication device that we’d gotten for Shane just a year or so before his passing. We’d fundraised hard and long to purchase a device called a MyTobii for him. It was one of the few augmentative devices around that allowed him to use his strongest gift…his eyes….to communicate with people. The technology was amazing in enabling him to focus on what he wanted to communicate, blink or hold his gaze on the subject, and have the computer communicate on his behalf. He didn’t’ have it in his possession long enough to truly share with us all that we know he knew, but he had it long enough to communicate one of the most critical things. “I want to call my Granny and Grandpa”….it was the first thing he said with the technology, and it was the one line that made my Dad’s life at a time when he himself was confined to a wheelchair and respite after his own stroke. “I want to call my Granny and Grandpa”…..it was a magical sentence and one that will remain in our hearts forever. I’ve even come to terms with the fact that his first words weren’t “my Mom is the coolest…I want to call her”…Shane’s wisdom was deeper, and he knew what needed to be said. Only two months later, Dad was gone, but he left us knowing his place in Shane’s heart.

It was unfortunate that finding that technology took so very long, so because of that I chose to donate the device to Open Access Resource Centre in Winnipeg. OARC is a lending library for augmentative communication devices, and one of the few in the country to do what they do. In the twenty years that they’ve been around, they’ve given support to thousands of people to find ways to communicate, when typical language isn’t possible. They were the ones that finally directed us to the possibilities that the MyTobii offered Shane, and helped us to finally get it for him. A big part of my being able to get through the first day of the new school year this past September, was by delivering it to them, in hopes that other children would not have to wait as long as Shane did to learn of the communication possibilities that existed for them. Yesterday I got a letter from the OARC Executive Director in the mail that tells me my hope has been granted. “The donation of Shane’s MyTobii will touch many lives and has already begun. A week ago I was out in someone’s home where their daughter is trialing the system and I was totally excited to see how well she was using it. This is a beautiful teenage girl who has had difficulty finding the right way to access her communication system. The family is thrilled to see things finally happening with their daughter and we have Shane to thank for that.” To learn more about the remarkable work that OARC does, check them out at http://www.oarc.ca/

If you’re interested in learning more about the eyegaze technology that we were able to explore, go to http://www.tobii.com/corporate.aspx . It would be a lot easier than me trying to explain it!

Another opportunity to share part of Shane with children who could benefit came a few months ago via the Salt Spring Community forum. I’d been signed up to the forum for months, so that I’d always know what was happening here when we finally arrived. One day there was a call for good used children’s books to be donated to a new school library located in St. Theresa Gayaza School in Uganda. Here’s what I learned about the project in a recent email I received.

The Uganda Library Project

"In 2003, Coming Home Films traveled to Uganda to produce a film about Canadian Dr. Irwin Stewart. At that time, the director and crew met the children and teachers of St. Theresa Gayaza Girls’ School, a co-educational facility located in the village on the outskirts of Kampala. Friendships were made quickly and it was the hope of the film crew that they might return someday to profile one of the children at the school. This hope was realized in February, 2006 when the Coming Home Films’ crew returned to film “Anita’s Africa”, a film designed for Canadian elementary school children. Its purpose was to explore the fundamental ties that bind all children of the global community and to foster in young viewers a sense of responsibility reaching beyond their own community and nation.

The return to St. Theresa’s Girls School also generated another idea and another project. In a school with over 1000 students, teachers had no library and few, if any, learning resources. Classrooms were filled to overflowing with 100-200 students being the norm for a single room in each grade. Children sat on benches which were overcrowded and turn sideways in order to write. Most of these children also came to school hungry, the surrounding community struggling with the difficulties of inadequate food as well as unsafe water and no health services.

Asked by Coming Home Films what could make one difference to the lives of these children, their teachers, and the surrounding community principal Sister Rose was quick to respond: “A library.” During a subsequent tour of the school with the idea of a library foremost, Sister Rose opened the door on a dilapidated classroom, long out of use but with possibilities. Clearly, with renovation and upgrading, this room had the potential to become the new library.

Subsequent meetings were held with school and community officials in Uganda and a tendered budget was prepared by a local construction company. The total required budget was 35,360,900 Ugandan shillings or approximately $22,000 Canadian dollars.

With support from the Mayne Island community and other interested individuals, fundraising for the new library began, a process which lasted three years. Initial construction was started in 2008. In February, 2009, the building was completed and over 2,000 pounds of books, shipped from Mayne Island, were placed on the shelves. For everyone involved, it was a dream come true.

Currently, Coming Home Films is gathering books for a new shipment to Uganda and raising funds for library furniture.

Cheques should be made payable to Coming Home Films Inc.

(please note “Uganda Library Project” on memo line) and mailed to: Box 106, Mayne Island, BC V0N 2J0"

I’d looked at several different possibilities for sharing Shane’s books at home, but the libraries I spoke to at the schools there only wanted a few, or would look them over and see what could be used, and sadly, the children in our lives are more interested in computers and technology, than a collection of books. So I connected with the lady on Salt Spring who was heading up the collection drive here. They were thrilled to take them all, so this past month I got to hand over his collection of over a hundred books that can be enjoyed by both the children in the school that they are going to as well as the entire community. And each book will bear a label that shares with the reader that they’ve been given this gift of literacy in Shane’s memory. They also have a leather bound book that is in the library there, that share stories and pictures of all the people and organizations that have contributed to the creation of the library and the stocking of it. Shane will have a special page in the book as well, so that those who get to enjoy his books will know his story

They also have a leather bound book that is in the library there, that share stories and pictures of all the people and organizations that have contributed to the creation of the library and the stocking of it. Shane will have a special page in the book as well, so that those who get to enjoy his books will know his story.

I hope that as long as I’m around, part of what I’ll be able to do will be to continue to pass along the love and lessons he shared with me. These are a couple of opportunities I’ve found to be able to do this, and writing this journal is another.

I’m going to end today, not with a picture taken here on Salt Spring Island, but rather with a picture I took at home a couple of weeks before we headed west. I’ve mentioned before, I feel like I’m noticing more and more these days, and this was one more thing that caught my eye on the way home from the mailbox south of Lavenham that beautiful day. Like everything else, it made me think of Shane.

Merry Christmas to all of you, and the all the best in 2010.

Till next time,

Lynda

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