My passion filled life
Thoughts and threads of passion and experience that have woven the fabric I call my life.
My passion filled life
Last week I made a return trip to Manitoba for ‘I love to read Month’. It wasn’t a particularly long planned for trip. I’d been intent on staying out of the cold Manitoba winter weather. That was, after all, a great part of the reason we chose to move to the West Coast two years ago! But I’d been enticed by a friend, who’d written to remind me that as it was ‘I love to Read Month’ and as I was an author, I should be there. After being steadfast on my decision not to go back in February, I went back to Manitoba in February. ‘I Love to read’ felt too important to miss.
I decided that this time I would focus on my “Shane’s Big Adventure” Books, because I had done ‘Tyson’s Orange Shirt’ last September and have hopes of doing it again this fall if the Universe permits. I know that Shane’s story has become old to some, and others may feel I should let it go and move on, but that’s not what my heart says. My heart says that I learned way too many important things during that journey through this world with that young man not to share it. As the anniversary of the 9th year since his passing approaches, I feel just as committed to sharing those lessons now as I did when he was with me. If one child who experiences life similarly is seen in a new light, or if one child who sees a child with a similar life path becomes a bit more compassionate towards that child, or a parent with a special needs child feels a little more empowered, then it is all worth it.
Over the course of the week that I was back in Manitoba, I read to 8 different schools. I can’t estimate how many children, because some schools had me read to each class separately, while others congregated the kids together. Each session started with sharing a little bit about Cerebral Palsy, and bit about Shane’s life, the reading of his first adventure, then his second, followed up with my singing his “When you Look at Me” song. There was always lots of time left for questions. The age groups ranged from kindergarten through to Grade 8. The questions varied just as much, with many veering off in unexpected directions discussing and sharing grief and loss. And that was okay, because I believe that conversations unfolded as they needed to for the children that were there with me in the room at that moment.
I know Cecil and I will question ourselves about the cost of some of my choices to return for things like ‘I love to Read’, presenting ‘Just my Friend’ or talking to kids about Orange Shirt Day. It is certainly making good use of our kid’s potential inheritance! But beyond that, doing these things always feeds my soul in totally unexpected ways, and I know in my heart of hearts that I’m doing the right thing.
One of the most cherished comments I received was that ‘Your Mom and Dad would be so proud of the work you continue to do.’ I walked away believing that they would be, were they still here. On that weekend, we had to go out to our house at the farm to do some work on our old home, now being used as a rental property until we make final decisions over the directions our lives are taking. We’d cleaned everything out of the house when we moved two years ago, but on a shelf in the very back of the basement I found a card that had been left behind. It was from Mom and Dad for a birthday sometime in the past. Now I’m a bit of a hoarder when it comes to cards and keepsakes, and I know I have no shortage of cards tucked away, but I don’t often pull them out. As well, they were on the far side of the country, but here was this single card, addressed to me and the verse inside was all I needed to be reminded my angels are always with me:
You’re a thoughtful daughter, who’s busy every day,
With people who depend on you and many roles to play,
But even so you find the time for friends and family
Giving them the best you can with warmth and honesty.
That’s why it brings more loving pride, than these few words can tell
To see you do so much in life, and do it all so well.
Lots of Love, Dad and Mom
It was a reminder that all is well. For whatever I give to keep living the roles I have, there is always more received in return. So here were a few of my biggest takeaways:
At the end I was full and depleted at the same time. Exhausted and exhilarated simultaneously. So glad I’d made the decision to go and do this, for whatever reasons I give myself to justify my choices.
And when one person commented that they were so happy that I continued to talk and share about that journey, I heard my self say…”It’s part of my life’s mission.” And it is. I wasn’t gifted with all this learning and wisdom not to pass it on in ways that work. I’m grateful I was encouraged to do so. I’m grateful I am physically and financially able to. I’m grateful to all that allowed me to share over those days. When it comes down to it, I’m just grateful.
Life is a beautiful circle of having the heartbreak turn into such incredible blessings. To live through the dark and to be able to see the brilliance of the light that is today.
Until next time,
A couple of years ago, while I still lived in Manitoba and was still the Senior Coordinator for Innovative Life Options (LIFE Inc), I was involved in what we lovingly called the ‘Kitchen Table
Talks’. The project was created to bring families who had a child living with a disability and who were not yet being provided services in the adult world together for open, engaging conversation. Our hope was that we could garner some wisdom from these families as to how things were working, what they were most proud of, what would be most helpful and what ideas they had for their son or daughter’s future.
We learned, more deeply, what we already knew. Families are amazing! They are strong, resilient, innovative and are hungry for information that will make their child’s life as full, inclusive and meaningful as each of our own lives strive to be. By keeping our conversations on the 'Appreciative Inquiry' stream, whereby we focused on what had gone well that we could build upon, rather than things that were not, we were able to garner a glimpse of the amazing things that families have done to provide the best they can for the children they so dearly love, whether their child is a youth, or an adult.
We realized much of what the families most wanted to know more about were things that could best be answered by other families who had walked this path. To build upon the wonderful initiative started, it was decided the next step would be to gather some of those answers, and I had the great privilege of being chosen to move the project forward.
It was decided that the best way to do that would be to compile a book through interviewing families using the questions that had arisen in the Talks. I sent out a call to the families I knew that were involved with ‘In the Company of Friends’, Manitoba’s self-directed, independent living model for adults with developmental disabilities. Ten families came forward to share their stories, and ‘Family Matters’ was born.
It was wonderful to spend the time in deep, connected conversation with the amazing people that participated. Many of them had been as much a support to me when I was raising Shane as I ever was to them in my working role. They shared, inspired, laughed and often cried, as they recounted the joys and the challenges of the lives we come to know on the unexpected roads of the world of disabilities. It was humbling to be given that intimate glimpse into each of their lives, and to be given their trust and faith that their story would be shared with dignity and respect, so that those who might benefit from their wisdom would.
So now the project is completed. ‘Family Matters’ has been published and shares these stories through the voices of the families that have lived the experience. These stories talk about inclusion, support networks, relationship development, the education system and of the many incredible steps that each family took to make sure that what their child needed to be a part of their community was put in place.
The book, ‘Family Matters’ is now available on Amazon, in both hard copy and on Kindle. At only 140 pages, it’s an easy, informative read where it can be picked up and explored one chapter/one unique story at a time.
It was the hope of every parent that participated and myself that in sharing our journeys, another parent raising a child with different, special needs, might feel a little less alone as they journey through life. Our hope was that something that we learned, some pearl of insight or achieved wisdom might take some of the bumps out of the road for another.
Parents are truly the greatest experts when it comes to what is needed and what is possible for their child. Parents also have to appreciate and then build upon the efforts and the work of the ones that came before, so that we can keep moving our world forward into one that is more inclusive, accepting and accessible for all persons, with and without disabilities. Family matters provides some of the history and structure that was laid as foundation of the work for the building that needs to continue. Maybe that work can be achieved a little more quickly and a little more easily, by sharing our lessons and learning, so that previously invented wheels might not have to be recreated.
Thanks to all that contributed. Thanks also for taking the time to read this. Please share this information as far and wide as you can, so that all parents who might benefit from the opportunity to access and read these stories, will know that they are there waiting for them!
5 out of 5 stars: A MUST READ!!!!
ByAmazon Customer on August 20, 2017
This book is a very touching book with many stories. Everybody should read it! Teachers and families that have a challenged child in their family should definitely read it! Helps to give you support you need!
4 out of 5 stars: Great work!
ByAmazon Customer on August 3, 2017
ICOF is a new concept for me, but I'm already a huge fan. Great work!
5.0 out of 5 stars Overcoming obstacles and ignorance to lead normal fulfilling lives is at the heart of this amazing read. Lynda is extraordinary writer who tells her ...
Bydixietomchukon September 11, 2017
An interesting and honest review of the lives of families living with a child with special needs. Overcoming obstacles and ignorance to lead normal fulfilling lives is at the heart of this amazing read . Lynda is extraordinary writer who tells her story and that of others in an open and honest way . There is help and resources available which is pointed out throughout the book. I love how the stories are told by answering 18 thought provoking questions.
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