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A curly haired angel in a walker

8/7/2019

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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.
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We're BACK!

6/28/2017

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It's been a while!  A lot has happened...a lot!  A move across the county.  The purging and sorting of a life lived on the prairies. Pulling up our roots in Manitoba, replanting them in British Columbia.  What a ride it has been!  

The journey has always allowed for the things that are important...but sometimes those important things have been put on the back burner while other things took centre stage.  Telling our story has been one of those things I'm afraid.

The time has come though to begin saying yes to the opportunities as they arise, and that's just what Trem and I are doing.  It's more challenging now, being so many miles apart.  But what we've both agreed is that the story and the message that 'Just My Friend' shares is part of our live's missions.  Even when it's challenging and might not always make sense, in my heart it's important to say yes to what matters most.  This is one of those things.

Along with sharing our own story through our presentation, I am so excited that I'm also now able to share the stories of other parents who have walked a similar path to mine!  In the last months I have had the great honour of writing the book 'Family Matters' in collaboration with 'In the Company of Friends' parents and 'Innovative Life Options'.  That project of the heart is now in printed form, and the hope of all of us that were part of this is that the sharing of our stories will ease the journey of other, newer parents who walk this path alongside us.  The book includes a chapter about Shane that I hope will inspire, just as all the other wonderful people highlighted in the other chapters continue to do in sharing their own, unique journeys!
If that wasn't exciting enough, I've also assumed a new role of guiding and supporting new authors to self-publish their works, and one of the first books is called 'I am Just Like You' by Lesley Feldman.  It is a children's book that is aimed at reaching youngsters, helping them to accept and appreciate diversity.  We may all do things a little differently, but under the surface we are all more alike than different.  
So that is where things are at on this marvellous early, summer day.  We are presenting next week at Rock Lake Camp, to help this year's new counsellors gain a little better understanding of the world of special needs. Each life touched is another possibility for a more positive future for our world.  Let us know if there is an event you'd like to see us attend.  Stories shared are what help us all to grow forward.  Till next time, 
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Finding purpose in the sharing of stories...

7/17/2015

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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. 
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Clarion Clarity:  A better understanding of 'Behaviors' in people who experience disabilities. 

5/7/2015

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In a recent 'purge' in the basement, I found a copy of a 'Reflection Paper' that I'd written in 2008, when I was taking Red River College's Disability and Community Support program, to further my career in the world of working with adults with disabilities.  Much of this blog is about our experience presenting, memories of Shane, tools and ideas for families of individuals with disabilities.  But somehow, this paper is one that I'd like to share here, when we end up being lax in appreciating what those that find it hard to find their voice go through in different situations.  Situations that are likely to cause 'behaviors' that lead to all those things that typical adults like you and I would never, ever have to endure.....med changes, loss of privilege, changes to plans.  But somehow, without a proper understanding, we feel it's okay to do that to other adults, simply because they are labeled with a disability.  Here was my recount of a near 'behavior' I had and a good reminder that I hope everyone who reads this will grow from!

Clarion Clarity

In the big scheme of things, all in all...I've led a pretty charmed life.  How could I not?  I was fortunate to be born a white Anglo-Saxon protestant woman in one of the freest, most liberal countries in the world.  I've been given a reasonable, measurable level of intelligence, a strong supportive family and a solid sense of self.  I've existed in a world where I've known freed of choice, freedom of speech, freedom from persecution.  It's been a very good life.
    That is not to say it's been a life without challenges.  There have been no end of them along the way.  There was the challenge of experiencing a level of exclusion and bullying when I was a chubby, six year old child starting school in a community where I knew no one, and no on knew me: of being trapped in a bad relationship with an abusive partner in me teens and twenties and finding my way back to myself when it was over; of losing my first husband to cancer when both of us were too young.  And of course there was what might have been the biggest challenged:  coming to terms with my son's disability and the change in direction that life had to take as a result.
     But through each challenge, I've also been graced through having my health, my family and my friends.  Three things that I've always believed are key to surviving whatever life throws your way.  Having that, each challenge has not only been survived, but has allowed me to grow and learn, rather than wither and fade.  To not only survive but to thrive!  I've had the opportunity to learn that time does heal, bad memories do fade and life does go on even if it is in a much different direction that the original plan had been laid out to go.  All of it made me who I am.
     I believe it is the challenges and struggles that have eventually led me to be the person I am and do much of the work that I do.  They have given me a unique perspective on many things and a different vantage point from which to look for answers and solutions to the challenges that the people I support today find themselves contending with.  To better support the supporters of the people who struggle with 'difficult behaviors' I have spent hours attending workshops and exploring websites of people like Michael Kendrick and David Pytoniak, hoping to learn from the ones that have worked so hard to figure it out before me.  I've tried mentally to put myself in the shoes of some of the people I support as I've talked the talk and shared what I've learned.
     One of those people is a lady is a lady i'm going to refer to as Alice to ensure her confidentiality is protected.  Alice is a woman about my own age who lives on her own in a small city in Manitoba.  But where my life story has been one of hope, support and relationships, hers has been one of pain, disappointment and heartaches.  Alice has a developmental disability and struggles with communicating in a way that most of us are able to understand.  When we are unable to do so, Alice resorts to behaviors that she knows wil get our attention in an effort to make her perspective known.   Sadly, people come and go from her life at an alarming rate, as is so often the case for people who experience disabilities.  No sooner does a staff person learn to understand her wants, needs and desires they move on and are gone.  The knowledge gained going with them.  Then Alice must start over once again, with another stranger and the cycle continues. 
     Having now been part of her life in my paid capacity for several years, there are certain things that I've come to know about Alice.  Like all of us, she wants choice in her life, especially when it comes to who supports her.  She likes men, but doesn't want them as support staff.  She wants to know who's going to be there ahead of time and she doesn't like surprises.  When any of those things do not happen for her, there is a very strong likelihood that Alice will have a 'behavior'.  Unfortunately for her, sometimes the people who have a large amount of control over her life neglect to respect those things that she has made known and don't listen to the people that know her story.  So behaviors happen, triggering more change in support, in medication and in her life.  I have always felt that I had a pretty good understanding of her and what she experiences.  I've certainly always been able to talk the talk about it, but on August 22, 2008, I found myself in a situation where I had the opportunity to walk the walk and that day my understanding deepened.
     So I need to backtrack just a little here.  In 2004, at the age of 44,  I discovered pedicures!  Since that time it's a luxury afford myself and is a big part of my self-care routine.  I'm not ashamed to say...I love my toe-nails!  Laugh  at me if you will,but they really have become a part of my identity...of who I am.  I always contend that it doesn't matter how hard or crappy the day might have been, at the end of it I can stretch out on my couch, put up my feed and say to myself "At least I have great toes...just look at them!"  Many will find that silly, they haven't walked my road.  Some day's it's something that small that gets me through to the next day.
     What is important to this story is that I don't just have any ordinary toenails, I have 'Cindy-Toenails' and that makes all the difference!  For years I have been loyal to a wonderful young woman who does pedicures at the Clarion.  She does the most amazing art and can meet any particular whim I might have about what I need on my nails.  She's an incredible artist and can meet my whim be it flowers, palm trees, snowflakes or musical notes. I love my Cindy!  Half of the fun is seeing what she'll come up with each time, but the other part of it is the relationship we've developed over time.  She knows me, my story,  my people, my likes and dislikes (she knows not to offer pink...I'm a purple girl)...and she knows this is 'my time' being spent being pampered before I go back to my life as 24/7 caregiver.is a big part of my keeping my sanity.   I book our appointments weeks in advance, I arrange my schedule around when she's available, arrange respite and child-care for my son, and most times make it a mother-daughter event with my Mom...whose Cindy is Linda.  It's probably important to note that both my mom and I are primary caregivers for family members who have intense support needs.  My son Shane has Cerebral Palsy and my dad suffered a debilitating stroke.  We are both on call 24/7 doing what needs to be done to meet their needs, so personal time is precious and takes a lot of coordinating.
     So, on August 22 Mom and I headed to the Clarion having booked the appointments six weeks in advance...with our 'people'.  It was going to be a great day as always!  We'd both looked forward to it for days.  When we arrived at the Clarion, we were greeted by the receptionist.  out of the corner of my eye I saw two ladies I'd never seen before standing off to the side, obviously waiting for their customers to arrive.  As we finished the formalities at the front desk the ladies stepped forward and introduced themselves saying that they'd be providing our services for the day.  I can honestly say I was so taken aback that to this day I don't recall the name of the young lady that shook my hand, but I fear she will remember mine.
     "Where's Cindy?", I asked looking around.
     "She's busy with another customer today," said the receptionist.
     "She can't be," I said.  "I always have Cindy...I requested her specifically."
     ""I'm sorry Ma'am (making matters worse...I hate being called ma'am")  They must not have noted it on your chart.  Cindy isn't available at all today.  We could reschedule your appointments for tomorrow if you'd like...it looks like that is a possibility."
     Inside my head I started to scream.  "Are you crazy!!!! We live two hours away;  we've had to book this day for weeks with respite and support....we can't just come back tomorrow!  We didn't by-pass all the options in Portage just for any old pedicures!  We want our people!  I WANT MY CINDY!!!"...but outwardly I just said, "no, that's fine."
     But it wasn't fine.  It wasn't fine at all, and even though I'm noramlly a calm, pleasant, rational middle age female professional...for the next hour I was a mess!  I felt a knot in my stomach and a clenching in my fists and teeth.  I wanted to be pleasant but I was angry and frustrated and disappointed that my expectations could not and would not be met.  i kept talking to myself in my head saying..."Just relax, it's only a pedicure, it's not the end of the world.  You can try to come back in a couple of weeks and get Cindy to fix things.  But...'myself'....just would not listen!  I couldn't relax!  I couldn't be pleasant!  I couldn't enjoy my time!  I was a breath away from 'Having a Behavior'!!!!!  And my poor mother...she had never seen me in a mood like this before, it even took her aback.
     As I sat there fuming, it suddenly occurred to me that this is what Alice must experience every time her expectations are not met!  If my mood can be altered so negatively because the person that normally points my toes is replaced now does she feel every time a staff person that she does not know and does not trust and does not have a relationship with shows up in HER home to provide for all of her personal needs?  How does she feel when she wakes up in the morning and finds that the staff she'd expected to be there has been replaced with a stranger, or worse a male stranger, because that was the only person available to fill the shift?  When the things that she's planned for the day get changed because the support person doesn't understand her communication or doesn't feel like doing what she has chosen to do?  The light bulb in my frazzled head lit up!
     I thought about my frustration, being a person who can very clearly express what's upsetting me, yet still feeling so upset sitting in this chair with a stranger, not 'my' Cindy.   I suddenly, finally, realized how utterly hopeless Alice must feel when this continually happens to her week after week, month after month, year after year.  I I wore her shoes I'd be throwing furniture too!  You are damn right I would!
     What started out as one of themost maddening, frustrating, disappointing hours suddenly turned out to be one of the best learning experiences I've had in my work in this field.  I still hated my toes, I still couldn't forgive the Clarion for messing up one of my special mother/daughter days, I was still frustrated by what had happened, but I did gain a very valuable understanding of what it must be like to have that lack of control in the day in day out experience that is your life story. For that, I will always be truly grateful.
     Today when people talk about how frustrating it is to work with certain people who exhibit behaviors I tend to look down at my now corrected 'Cindy Toes' and think to myself, 'Yes, I'm sure that it is...but have you put yourself in their shoes for a day?"  Then I pose the question to them.  Wouldn't it make an incredible difference in the lives of the people we support if indeed each of us could actually say that 'Yes, we've been in their shoes"?  Even if those shoes were sandals during a pedicure where all the things we'd anticipated did not happen. 

     That was my story from 2008.  It earned me a 25/25 on grading, but it has taught me a lesson that I never forget when someone talks about the 'behaviors' of someone they support.  What is all the background information?  What were they expecting?  What actually happened that led to the 'behavior'? And on one final note....the Clarion has never not given me 'my' Cindy since that not so great day...and for that I am truly grateful!
    
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The Resilience and Brilliance of Special Needs Families

5/5/2015

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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,


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Kanye Questions

9/16/2014

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Kanye pushing all fans to stand. Photo from BING photos.
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, h
ow 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

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Five years later....

3/11/2014

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PictureOne of my favorite memories...On an air-boat in the Everglades...precious memories!
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


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The greatest photo, Shane in the grape leaves, taken by Bianca Bell for my Christmas present project they planned
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Sharing our story with CBC Radio Noon February 2013

2/12/2014

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Love looking back into the archives of what has happened over the past with our 'Just My Friend' presentation.  This week I was reminded of the interview we did last year in conjunction with 'Inclusive Education Week' in sharing our story about why it is so important for Trem and I to continue to share the story of the friendship that had developed between Trem and my son,
Shane Dickson. 

I love that last year we were fine-tuning the presentation, and this year we will be presenting at the MCEC conference at the Victoria Inn next week, in celebration of Inclusive Education and all that it means to all stake holders.  We are both very proud that we have this opportunity to share the story of the friendship that developed between the boys, and remained as they grew into young men.  We love that this story has the potential to ignite possibilities for other children with and without disabilities to create deep, lasting connections with each other.  And what we really love is having the chance to keep Shane's incredible memory and legacy alive by being able to share him with you, through our memories and perspective! Thank you so much for allowing us to do that, and please come out and join us when you see us at an event near you!

Our love and gratitude..
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    Lynda and Trem are Grateful knowing....

    we are so lucky to have this opportunity to share the things we are doing, and the many things we are learning as we continue to work towards inclusion in all areas of the world we live in !  
    We appreciate having this opportunity to share our experiences here, as we all grow together! 
    Thank you for being part of our journey!

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