It was a busy weekend that followed three busy weeks of hanging with grand-kids then working with world class leaders at a leadership camp.  By Saturday, I was pretty exhausted, especially after fighting with leg cramps half of the night.  But I was not going to miss my chance to play at the Family Fun stage at the Kenora Harbourfest event.  I’d be chosen as one of the finalists for the local radio station (89.5 The Lake) in their Sunset Country Spotlight.  I was bound to be there. 


My hope with my music is that when I sing the songs I’ve written, the right person will hear the right words at the right time.  I’ve been writing songs now for darn near 48 years.  I long ago gave up the idea that music would be what made me money in the world, but I’ve never given up the idea that music will and does make me rich.  It has, through the people I meet, the shared stories and experiences, the common hopes for our world.  It’s been amazing really. 


I was on the stage, having the opportunity to play thirty minutes worth of tunes, so that listeners could get a feel for who I am and what I represent as I moved onto the next stage of the Sunset Country Spotlight competition.  I first saw him with his mother somewhere around the third song of my set.  A beautiful, curly haired little boy about four years old, working his heart out, making his legs move the bright yellow/green walker he was strapped into around the tarmac of the parking lot that had been taken over for the festival.  I felt my heart smile. 


I don’t think I’ve performed anywhere in the past ten years that I haven’t built Shane’s song into the set list.  He’s been gone for over a decade now, but he’s still with me with every breath I take.  He’s still my boy, and I still celebrate his life and his lessons whenever opportunity allows.  So it was yesterday.  


I did a brief introduction to the song for the audience, and was barely into the second line of it, when the child who’d caught my eye came into sight again.  This time he headed right to the shade of the tent set up for the stage.  I’m not sure what drew him and his Mom in…maybe just an escape from the heat.  Maybe she’d heard some of my introduction.  I don’t know, but there they were.  I saw him moving to the music, and noticed Mom starting to pay closer attention to the lyrics.  As it continued along, she took him out of the walker he’d be working so hard in and lifted him into her arms as they began to dance together to ‘Shane’s Song’.  His beautiful curly head swayed back and forth, the smile brilliant on his face.  My eyes began to water.  It was all I could do to get through the song, but I had to keep going.


By the time I finished my set they were gone.  I don’t know what Shane’s song did for them, but I know what it did for me yesterday as I watched Mother and child dancing together to the rhythm.  It was the reminder that I needed, after a long, tiring three weeks, that all is well.  When I do what it is I’m meant to be doing,  life unfolds as it is meant to.  Curly headed angels show up to remind me that the message of my song still has much purpose and meaning.  He also reminded of the fun, laughter and connection that was had in days of old, when music made Shane and I get up and dance to the tunes.  It was so important that I was reminded of that as I was. 


After I’d finished, I rejoined friends of mine from Germany who were with us.  The husband was complimenting me on the set, and in particular on “Shane’s Song”, then asked, “Do you practice that smile that comes across your face when you sing his song?”


I told him no, then he continued, “I noticed it was just so radiant when you were singing about him.  So much brighter, it’s almost angelic. How is that?”


I didn’t have an answer, and in truth no one has ever noticed, or at least mentioned that to me before.  But I thought about his words and realized, that it most likely is more angelic and radiant when I’m singing it, because when I do, angels never fail to appear to keep me going.  


Thank you to the little guy in the brilliant walker.  You reminded me once again of the joy in challenge, and of the reason that my work on Shane’s behalf will never be finished.

​The call came in yesterday, from an acquaintance back in Manitoba that I’ve known for many, many years.  He’s not necessarily someone that I’ve had the opportunity to know well, but even though our cultures and lifestyles varied substantially, he’s still someone I’ve always had a good relationship with.  The call was on my husband’s phone, but it soon became apparent that I was the person he was needing to talk to, the one that could provide the answers to the many questions that had arisen for him.

In conversations of years ago, Cecil had approached him about the possibility of fabricating a travel buggy for Shane similar to one that we’d seen on our travels to Tofino, BC for Shane’s Sunshine Dream in 2004.  Although nothing came from the conversation in terms of the buggy, it did let this gentleman know, for the first time, that we had a son living with special needs.  Now, all these many years later, he remembered that when his own grandson was born and given a label at birth.  The family suddenly found themselves new-comers in the world we’d navigated all those years for Shane, and he wondered if he could ask some questions.
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We chatted on the phone for about an hour. I told him some of the many, many things I’d learned in living in the system that supported children with disabilities to live life.  I heard myself passionately sharing some of the opportunities that are available now, the social media changes that have allowed families more access to others who are experiencing the same, the things that our children will teach us.  I shared some of things we never realized we needed to learn until they came into our lives.  We talked about some of the fears, the grief and the new learning that will have to take place now that they’ve been advised they are going to be taking the road less travelled. I hope at the end of our talk he was able to feel a little more hopeful and optimistic about the years ahead.  There will be struggles and challenges, but there will also be so much joy given by this precious new life that has been given to them. 

​I ended our conversation with a promise to send him a couple of the books that I’ve written, and heard myself quoting Rumi, saying ‘we are all really just walking each other home’, telling him of my own belief that when we’ve been given the wisdom and knowledge that only life experience can offer us, we have it within our power to ease the journey of so many others if we just share what we’ve learned.

Last night, just as I was drifting off to sleep, I recalled that conversation.  Once again, that age old question ‘What is my real purpose here’ rose up in my head, as I know it does for so many of you as well.  Only this time, the answer became so clear to me.  It rested in the words I had said on the phone.  It’s in almost everything that I’ve worked towards in the years since Shane died, and that has been and continues to be share his story.  Share his message.  Share his teachings.  Share the light of his incredible spirit.
I thought about all that I have undertaken and done.  The songs, the books, the presentations are all a part of that.  I realized however that those just touch the tip of an iceberg that runs so deep below the surface.  I realized that within me is a lifetime of all little, unshared pearls of information.  Things that worked, things that really didn’t but were stepping stones that led to something else that did.  Stories of our journey that might offer hope and inspiration to someone else, just when they really need it.  As I lost consciousness and fell asleep, my last thoughts were that it’s time to start more earnestly and intentionally than I have thus far. If not now, when?

The ground work has been laid.  Now the next stage begins, and I’m so glad that you’ve chosen to join me here. In the weeks and months ahead, I will continue to share those things, to build this website further so that it will offer links and ideas to others.  My greatest hope, is that as I embark on this mission, that you’ll join me with your own input and learnings!  The world about us is changing hourly.  New things are offered, new ideas are brought to reality, and new children are born that need what we’ve learned and continue to learn to be able to thrive in our world.
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I know by the speed that my fingers type as I write this down, that I’m onto something very important to what part of my legacy is going to be.  When we lose ourselves in the moment of what you’re doing, that’s when we know we’re getting closer to answering that age-old question, ‘why am I here’.  I am here for you, just as you’re here for me, because the truth is we really are all just walking each other home.  Together, let’s make that journey incredible!

Don't we all just have those days, when you're just not sure what it is all about?  What you're meant to be doing, or saying or achieving in life?  Days when the questions far out weigh the answers?

As a Mother who has lost her child, I know I struggle with that often.  Even though it's been six years now, and life has taken on a new form and a different flow, there are still those days where I ask myself what is it all about.  What were all the lessons that I had to learn for anyways?   What are the next steps when what you believed your purpose was has changed so drastically?  What now?

I have more irons in the fire and things on my to-do list than just about anyone I know.  The endless little piles of projects and ideas and things to yet be accomplished are scattered beyond my office, they area throughout my home, as I pick at pieces of what might be next, trying to put it all together in a way that makes sense of life.  I read and re-read the writings in my journal, seeing myself asking myself that question so often.  The answer is so close, but still just out of reach most days. 

I become so busy being busy, that I neglect to sit back and just review and reflect. I know it's important, I encourage and challenge others to do it all the time through my life coaching. But like all people, sometimes I neglect to take my own knowing and turn it into action. Then I get a day like today

This morning, in an effort to get through one of the piles on my desk, I came across some of the feedback forms that we'd received after our presentation at the CCDDA conference in Winnipeg in June. I'd read them quickly then, but not since in all the things that we've been 'busy' at. So this morning, I took the time to scan them into my files, and post some of the authorized testimonials on our website, and in doing so, was reminded of what is so much a part of my purpose. I am filled with gratitude.

The kind words, the heartfelt encouragement and gratitude for what Trem and I share, reminded me of just how important it is that we do keep sharing. That we continue to tell Shane's story...our story...and his lessons and his teachings to us...because he was one of the greatest teacher's that I have ever known. To be able to share that and reach the hearts of others through our words and my music is such an honor...such a gift.  

Sometimes I need to gently remind myself, that it was not all for nothing. That there was meaning, and knowledge and wisdom that was gathered on every step of our journey together, and that by continuing to share it with others, we have the opportunity to make the journey of another less lonely. To share it ensures that nothing is lost.  To offer another parent hope that what they want most for their son or daughter...love and acceptance and meaningful relationships...can be possible. Not easy, not without intentional work and effort, but none the less possible.

Maybe something that worked for me will work for them. Maybe something that moved Trem to embrace that friendship, will inspire another to take those little steps that changed all of our worlds. Maybe ... just maybe... a child's life and a families experience will be just a little bit easier because of our being open and sharing what we went through with others.

Maybe that is the point of so much of our life's purpose and journey, every one of us. Just to share our story, teach what we learned through what worked and what didn't, to keep offering light, and hope and optimism to those that we encounter on this walk through life. We are all on different paths, but we all share the road we're traveling.   

Whether it's through presenting at a workshop or just being available to answer a question or offer a suggestion to another whose path is similar, maybe the purpose is just to do it with authenticity and an open heart..

And maybe when we need our own answers the most, they are given to us...through the kind, thoughtful feedback of others. Thank you all so much for that. 

I the work I was doing with LIFE I had the pleasure of participating in a part of a project that was initiated called The Kitchen Table Conversations.  The Kitchen Table Conversations were a unique opportunity to witness first hand the resilience and the brilliance of Manitoba families whose children live with special needs.  It didn’t matter if their child was five or fifty five, the passion and desire that parents maintain to ensure their son or daughter has the most fulfilling life possible was the same.  Those of us that were honored to be invited into the lives of these incredible people were reminded once again that it is the relationships in people’s lives that give those lives meaning and opportunity.  Opportunities that funding and systems that have been put in place for people with differing needs alone could never provide.   Out-side the box thinking and the focus on inclusion was always paramount to ensure the best for their child.  For all that they have to go through to support their children, they are truly resilient. My personal knowledge of what they went through being a parent myself, only deepened my respect and awe of those we connected with.

One situation that struck me most deeply was in one of our earliest Kitchen Table Conversations, in the south central region of the province.  One of these amazing mothers shared the story of her son Darren, who lives his life on the Autism spectrum as well as being visually impaired since birth.  Darren has had the opportunity to be educated with same age peers in a typical school setting.  The supports put in place ensured that Darren continued his school years with these peers, developing strong and lasting friendships with many classmates.

However, as is the fear of so many parents who have children with special needs (myself included back in the day), his mother was concerned that in their middle teen years that Darren would begin to see less of his friends.   With everyone else having the opportunity to acquire their driver’s license and begin exploring life as the young adults that they were,  her fear of Darren getting left behind was beginning to be realized.

Determined not to let this happen, the mother came up with a plan that she hoped would ensure that Darren still had the regular contact and connection that was so very important to him.  Although Darren’s blindness prevented him from being able to get a driver’s license, it was not a deciding factor in whether or not he could own a car.  With that, she went out and purchased one for him.  She then made an offer to all of Darren’s friends.  Darren’s car was available to any of them to use at any time for any event that they wanted to get to, whether it was a sports game, a dance, a concert.  It didn’t matter to her.  There would be gas in the car and it would be ready to go.   Her only stipulation was that if they were taking the car out, they would take Darren with them. 

It didn’t take long before Darren’s car was hardly ever at home.  Neither was Darren!  All of these friends had passed and acquired their driver’s licenses, but none of them had cars or the kind of access to a vehicle that Darren’s mom offered them.   Darren’s teen years were a series of trips to Winnipeg for events of every kind.  Sunday drives in the country.  Cruising the main drag on a Friday evening.  All the things that teen age boys thrive on when that first taste of freedom comes attached to that little piece of paper called our driver’s license. 

As for Darren’s mom, she was never concerned about his safety, because these were his friends.  They’d grown up together, played together and learned together.  She knew that his best interest was always at the top of their minds and they appreciated the opportunity that they’d been given far too much to ever risk losing it. 

Now they are all older, Darren’s car is not nearly as attractive as the vehicles his friends have managed to buy for themselves.  But because of the support those relationships were given, thanks to the old car, Darren is a regular fixture in the sports cars they’ve traded up to.  Brilliant!

Families do amazing things to facilitate friendship and relationship for their children with special needs.  There are thousands of incredible stories out there, and we'd love to hear them!  We'd love for this space to be place where families and people share their incredible stories of the things that they've done to inspire inclusion and acceptance of their loved onw in a world where differences can keep us separated, but the love of those who care keep us connected. 

Just My Friend is all about that...connections, relationships and inclusion.  In the end, what more really matters? The photos I chose are to bring the point home, from our own efforts in organizing Shane's own Sunshine Dreams for Kids which was one of our personal efforts to ensure that Shane's experiences included his friend and his sister...who people that could best share his story.

Do you have a story you'd like to share, or know of a family that is doing amazing things to ensure the relationships that are so important to their son or daughter's experience are being supported to continue?  We would just love to hear them!

Until next time,

Last Friday Trem and I were invited to MacGregor Elementary School to share our story with the Grade 5 and 6 students there. It's what we've talked about being an important avenue to share our story through, but this was our first opportunity to talk to kids in that age group. We were both a little nervous, I'll admit. 

It was amazing to be there at MEC, back in the building and the atmosphere where the whole story began. Sharing the memories, the joys, the heartache, the anger of the dreaded 'anonymous letter' and the tragedy of Shane's passing. Fifty-some pairs of eyes upon us, encouraging us on, engaged in our story and being open and willing share their own experiences. It was an amazing afternoon, and we both so appreciate those children and their teachers who spent the time with us.

But isn't there always something so cathartic about sharing our story and our memories and our learning with those that we hope will carry that seed of insight with them into their own day to day lives? The vibrant, engaged faces of those beautiful children gave me absolute hope that the story we shared will live on, that lessons will be digested and shared, that wisdom will be passed along by them to others whose lives they will reach.

That's really what all of life, and this work in particular, is about isn't it? Having the courage to stand in the middle of our messy, heartbreaking, earth shattering stories...and trust that the listener is walking that path with us as we work our way through the memories...good and bad, sweet and sour, life nurturing and soul challenging. Our greatest of human hopes is that when we've had the courage to share that deep, protected part of ourselves with another that our vulnerability in doing so will be honored and respected. That the lessons learned and shared will be seen as the valuable possibilities that they are. Possibilities of a better time, a better understanding, a better future and a better world for all of us, regardless of our strengths and abilities.  

My deepest gratitude to those students for your kind attention and engagement as Trem and I shared. My fondest wish is that you'll remember pieces of Shane's story and message as you travel on through life. I hope you know the power and the impact that your understanding and sharing those lessons may possess, because you are the generation that has the potential to change the world as we know it. As young as you may be now, you have the wisdom, the tools and the technology to be leaders in a tomorrow that will see all persons valued as equal and all people embraced by their communities. What a gift you are this world of ours! Thanks for being you!  

My son has been gone for over five years now, so we currently don't live day to day in the world of disabilities that directed our lives for so long.  However, a huge part of my heart still remains there, and I think it always will,

On some days, like today, I feel a little piece of it crack and break with the sadness of events that go on around the world. Seeing the recent Kanye West video of his concert Qantas Credit Union Arena in Sydney on Friday (Sept. 12) was one of those events.

Although I can see now it's been a big news maker on many television fronts, it came to my attention through Facebook, on a link another mother shared and the accompanying Bill Board article about the event.  (Click here to read the full article).  It began when West called out two people in an audience of thousands for not standing when he asked the entire crowd to stand up before performing a song.  One person was in a wheelchair, the other had a prosthetic that wouldn't allow them to stand.  It turned into a full four minutes of singling out two individuals that ended up being the focus of all others in attendance, while the show was held up.  The booing and the chanting "stand up, stand up" continued until West's security determined the wheelchair was in fact real, and finally the show resumed.

So many of us have such a small circle of influence, where we can change a few hearts, minds, and beliefs through our words and actions.  We're always hoping to plant just a couple of small seeds that will move the world towards a more inclusive and accepting place for all people and would love to have the kind of reach and impact that Kanye has.  With West's ability to reach so many people, used in a positive way  this could have been such a wonderful teaching moment for those thousands of fans who live life with able bodies.  Instead it turned into a mockery.  What a sad message to send and what a missed opportunity to move our world forward.

My biggest heartache is for those two individuals.  To have been singled out that way, and made to feel so different and isolated in a world where decades have been dedicated to bring people with all kinds of abilities into typical community places and events.  It must have been horrible for them, and sad for the movement towards inclusion and participation.

I've explored deeper to see where things went from there.  I do see that almost 5 million people saw the video of the incident that was only published 3 days ago, and it has hit some of the big news.  In one video Kanye seems more intent on making sure that the morning news shows don't 'demonize' him, without ever saying that he might have done things differently in retrospect.  In another he says there was 'no malicious' intent.  Another actually referred to a concert in Austin earlier in the summer when he assisted a young person in a wheelchair to get a better place to sit so he could actually see the concert.  

I don't know him, and won't profess to guess where it all stemmed from.  Maya Angelou said "we do what we do, when we know better we do better. "  Whatever happened, lets hope there's a turnaround lesson learned for the next time, for the artist and his fans.  Lets hope some of those 5 million viewers were advocates or self-advocates who are bothered enough by it that they are inspired to continue to educate those in their circle of influence.  Circles ripple and seeds grow,  so maybe this will be a trigger to so that change can continue to happen and others continue to grow forward by speaking up. 

Maybe the bigger question, how can we help people of influence to know better, to understand the journey more deeply  and to use those teachable  moments to celebrate and include difference. 

Till next time

I am always so proud when the people we work with and for find their own voice to help move the world forward into a more accepting and inclusive place!  I don't know Bob Hebert, but I know he speaks volumes as a teacher to all of those whose live he touches!  Wonderful stuff!!!

Yesterday, March 10, 2014, marked five years since Shane’s passing. Five years since the night that I turned off the light in that hospital room, only to flick it back on twenty minutes later and realize that in that short span of time life as I knew it at had ended.  Five years..
There’s a saying I’ve heard that says ‘the days go slow…but the years go fast…’  I get that.  That is so how it feels in this new existence.  Some days seem to drag on endlessly…some, where your heart aches and just can’t keep up with the reality that your head continues to pound into it..those days drag on endlessly.  But the years?  In honesty, they seem to have flown…so fast, with so many changes, so many happenings, so much adjustment.

When Shane first passed I read that it takes five years to once again begin to feel normal after the loss of a child…to begin to breathe normally, to function normally, to live ‘normally’, so as you can imagine I have waited for this date.  I have waited for this five year anniversary where I might start to recognize myself and experience some sense of normalcy once again. 

Now that date has come and gone…but the sad reality is that there is no return to what was known to be normal.  However, there is a more gentle acceptance of what is.  So maybe that is a better description of what the five year marker means…not a return to normal…rather an acceptance of what is, and the ability to live relatively comfortably in that.  So maybe…that is where I am..where we are…and that’s okay.

What has been most interesting to me is that what I thought might have become easier by now, really hasn’t.  I thought that the time might have come when I’d miss Shane a little less…that I might be used to his not being here and be more content with that.  But strangely, I continue to miss that young man so darn much it’s incredible.  It still takes my breath away on a daily basis.  I wonder what the scheduled timelines are for that to change? My guess…there are none…it’s all uncharted water.

So now, five years after the fact, these are the things I know for sure. 

•  I do still continue to miss that beautiful child of mine every minute of my day.  He is a part of every breath I take and every action I make, and I don’t see that changing any time soon.  Whatever your spiritual beliefs might be, mine tell me that he reaches out to me daily in symbolism and experiences that let me know he is out of sight, but he is never too far away.
• Shane’s force is as strong in the world today as it was when he lived here with us, and maybe even stronger.  For me and others that loved him, he’s become our passion and our purpose to continue to make change in the world for all the other ‘Shanes’.  His life may have ended, but his mission continues.
• With time it does become easier to let go of the mementos and keepsakes that you cling to in the early period of the loss…but as you find you’re able to release what you cling to, those that you release those treasures to value and cherish them in a way you might not have believed possible earlier on.  You only keep what you give away….so pass the magic of the memories along.
• Shane gifted our lives with his existence for a reason…and every time Trem and I share the story of their friendship, his lessons, our memories….that reason becomes more concrete, more real, more important and intentional for both of us.  We all have a greater purpose on this earth than we can ever even imagine.  Love, joy, connection, acceptance…those are our highest reasons for being here …and the most beautiful thing for me is that in every opportunity to share that story…those are the emotions I experience…Love, joy, connection and acceptance…a state of bliss…a state of flow in sharing our story.    And that tells me that in doing what we are doing in sharing that story, I am being offered an opportunity to share my highest purpose to do my part in moving the world closer to being a place of acceptance, inclusion and equality.  What a gift…what an opportunity.  Thank you for that Shane…love you forever…like you for always…as long as I’m living…my baby you’ll be. xoxo