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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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Family Advocacy Network of Manitoba (FAN)

3/5/2019

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Last week was an incredibly busy and rewarding week for Trem and I.  I do a lot of joking that 'I can't believe I came home from Mexico for this!' in terms of the cold and the snow we have, but in terms of presenting our story it was amazing! 

​I had been quite relaxed enjoying our break from the winter weather when I received a couple of emails in early January.  One was from the ED of 
Innovative Life Options, Patti Chiappetta, wondering if I might be home by March 1 for the 3rd annual Family Conference that they were hosting in Winnipeg.  The other came from the librarian at Austin Elementary School, wondering if I'd be around for 'I love to Read' month.  I decided that both were worth returning to the frozen north for, because my heart and my passion still are very aligned with 'Just my Friend' and the work we need to continue to do for people who experience disabilities.   So home we came!
​I worked for LIFE for over 13 years, and the Family Conference was a result of a project I'd been part of starting in 2013.  One of our favorite local 'disability gurus', Bob Jones, had approached LIFE about doing something that was more innovative, and the result was what we'd called 'Kitchen Table Conversations'.  They were small gatherings of three or four family members in various corners of the province of Manitoba to talk about where things were at for their loved ones, what was going well, what could be built upon...what were the dreams.  It was incredible, heart touching work that touched me deeply.


The project resulted in a couple of things.  One was the book ‘Family Matters’ that I wrote in collaboration with LIFE and the ICOF (In the Company of Friends) families that were willing to share their stories.  The other spin off was the Family Gathering Conference, now in it’s third year. 


I made myself available to sit in on most of the conference happenings, all of which were great. Trem and I were lucky enough to get a morning session to talk about our experience in connection and relationship development, which was an awesome experience and well received by attendees.  



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Trem Cleaver and Lynda Dobbin-Turner at the Family Gathering Conference
What I was most excited about over the course of the event was to learn about FAN, which is the Family Advocacy Network of Manitoba.  FAN is a grassroots collaboration of families  for families of people who live with various disabilities.  It has been created with the understanding that it’s other families who best know the needs and experiences of others in the province, with the goal of easing and supporting each other’s journeys.  They are a group of individuals who recognize that change best happens when we work together and share our voices to promote the change and opportunities that our loved ones with disabilities deserve and require to have the best life possible.  I’m excited to see the passion behind this fairly new initiative, and look forward to supporting it’s growth in the province in the years ahead. 

Having sat in on their presentation, I asked if they’d be kind enough to share their story with me, so that I could share it with you…and of course they were.  So, below is the history and opportunities that are available now because of the newly formed Family Advocacy Network of Manitoba.  Please take a few minutes to learn more, because if you have a family member with a disability, or if you know of another family as with everything else, there is strength in numbers.  It is the love of family that has created some of the most incredible changes in so many aspects of history, and it is the love of family that will keep moving the world of disabilities forward into a more supported, accepted and celebrated place. I love the use of the world ‘navigators’ because as Rumi said, “we are all just walking each other home”.  If what you or I have learned with ease the journey of another towards having a better life experience, then lets band together and use those skills as best we can.


​ 
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​As parents of children with a disability we have commonalities…...the advocating never ends… as there is always a new stage in life and another hurdle to cross.   There is advocating for therapies, with medical professionals, with the school system, transitioning from high school, supported employment, supported housing, respite… . And a humongous commonality is that we advocate as lone rangers… us against the world… issue after issue…. And with authorities that don’t seem to get it.  
We fumble our way through and often only learn about resources during connections with each other.  There is no manual for us and we often speak of how helpful it would be if we had a navigator to help us see our way…. A real person to guide us. 
We hear comments about needing a place where families can connect to provide support, knowledge and share experiences with each other.  A place where families can be heard, to be present and to be influential with the “powers that be” with decisions that are being made for the care and quality of life for our loved ones with a disability…..  It is as a result of our experiences and journey in our world of supporting children with disabilities that the Family Advocacy of MB has come to be.  Rather than feeling like lonely islands in the sea we want to band together to become one big island.  We believe there is strength in numbers. 

Over the years the need for a family advocacy network was a desire.  Through the Inclusion Winnipeg Advocacy Committee meetings this passion grew and in the fall of 2017 we began taking steps for creating a Family Advocacy Network.  Around this period of time there was also an interest with several other organizations on Family Engagement where we were able to share our desire for a network and collected names of other parents that were interested in participating.
On March 3rd 2018, we held our first meeting of the Family Advocacy Network.  There were 33 families present.     We asked the families the following questions:
  1. What is working well for you?
  2. What resources have been helpful? 
  3. What roadblocks have there been for you? 
  4. What is the most concerning thing about the future?  
  5. What would you like to see changed?

On May 5th at our second FAN meeting we took what we heard from March 3rd,  asked the families to prioritize several topics and held in depth discussions in smaller groups.  In closing we agreed that we needed to continue this work to collaborate with each other and to promote change…The persons present in the May 2018 meeting narrowed down the long list of issues that were most relevant to the families and small networks are forming based on areas of interest and/or concern…. Some of which include:  1)Transitioning to Adulthood and Supportive Housing  2) Development of a website 3) Quality of Care in Community Homes and 4) Wages/Training/Education for direct support workers
Just as the butterfly we are evolving and transforming.  In the Fall … the cocoon stage.  By spring we grew our legs…and in Mid May we gained our wings.  We chose our name… Family Advocacy Network of MB or (F.A.N) for short.  We have 181 registered members.  We want to grow and are ready to spread the word more widely throughout the city and the province.  We are asking each and every one of you for your continued participation whether it be through sharing your concerns via emails/letters or by getting involved in an action group.  We have our wings but our destination is far reaching.  We need you to become involved and to spread the word as we have many destinations that we want to visit along our way to our final destination which is ….. a system that will allow us parents peace of mind.  A system where people with disabilities are being adequately supported by the system while being surrounded by a network of caring friends and family and they can feel empowered to live good lives as part of the community. 
 The following are some actions that have been initiated by the FAN to date:
  • In May 2018 … we launched our Facebook Page
  • In June 2018… FAN held a PATH where two facilitators drew out the group’s ideas on:  Possible Future Dreams/Goals and the steps to be undertaken to move the dream forward. 
  • In July 2018 …Letters were sent to several ministers for the purpose of sharing our concerns... and collaborations have commenced     
  • We have created a small leaflet describing FAN and are working on developing a pamphlet and a website
  • In September 2018 seven family members and 3 self advocates of the Fan Network met with Jay Rodgers, Deputy Minister of Families on the topic of Wages/Training/Education for Support Workers
  • In Sept we emailed a one page letter to all the MLA’s in Manitoba and to the Premier’s office to introduce the Family Advocacy Network to them
  • In early Oct CBC news featured us in an article in their news feed & in a radio show segment…. This media coverage increased our numbers on our Facebook page significantly
  • In January 2019 five FAN families met with the Minister of Families, Heather Stefanson and her support team on the topic of Supported Housing and Independent Living
  • We are creating several short videos.  The focus is to create a series of videos that tell the story of families of people with disabilities living in MB and to promote the Family Advocacy Network.  I am pleased to inform you that the first video in the series is ready and will be shown today.  
 
Our hopes for the Family Advocacy Network….is
  • A place where a person can reach out to, whether it be for information, someone to be by their side as a support when they are dealing with a difficult situation, or to offer a helping hand for navigating the system and locating necessary resources. 
  • An entity that will be welcomed to join the table with decision makers for collaborations surrounding needed supports and policies.  Undoubtedly our lived experience would be an asset and have a positive influence for our family members with a disability and their families
  • To see a different system come into being for our Manitoba families connected within the disabilities community.  A system that will allow parents to have peace of mind knowing their children with disabilities will be safe and secure now and for the rest of their lives.  ​

 For more information, or to get un the FAN mailing list, please send an email to families.caregivers@gmail.com

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We are all walking each other home

12/1/2017

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Newborn baby Shane, before we knew what lay ahead of us.
​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.
​
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!
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The meaning of life is to find your gift. The purpose of life is to give it a way. Pablo Picasso
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Compassionate Friends

12/11/2014

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One of my favorite pictures.  I don't even know who captured it, from a long, long time ago,but still makes my heart sing.

I've been a little quiet on hear of late.  As far as the presenting goes life has been keeping both Trem and I busy on other fronts, and I've dedicated less time to this side of my world.  But I always trust that life is unfolding as it should, and we have some great opportunities coming up in the new year!  We have been asked to present at next year's CCDDA Conference in Winnipeg in June, and that's huge, so we are both excited and honored to have been invited!

For now, I've been sharing my talent and story on other fronts.  Most recently providing music for the local Compassionate Friends Chapter's annual Candle Light Remembrance Service.  I know that if I hadn't shared the journey of all those other parents who have lost children, that I couldn't sing their experience in a way that helps them to heal and get through this very difficult season.  I feel so fortunate that I've been given the tools that allow me to do that, and the strength to be able to.  I thank Shane for that.  And being a part of that evening reminded me in the power and the strength that friendship has in helping us to endure the absolutely worst things that life can throw at us.  Not simply endure, but to come out the other side of it.

Just my friend is about the story of Trem and Shane's lives, living with and without disability.  But as Trem and I always try to ensure people realize, it's not just about opening yourself up to someone who has a disability. It's about opening your heart to others who are different from you in any way, whether its race, color, religion or any of the things that might have us see someone as being different.  It's about being open and aware of the fact that friendship is precious and invaluable to all of us.  Its what widens our worlds and our perspectives.  It gives us a sense of belonging that we can't get anywhere else. It is so, so important in this struggling world we live in and by offering our friendship to another, we can change the trajectory of a life.  We can help them rewrite their story and open up possibilities that could not have been available without had we not connected at some deeper level. 

I've been thinking so much about that over the last many weeks, hearing the news that is going on around the world.  The missing and murdered, the racial clashes, the heartbreak that is happening in all corners of this magnificent earth we all share.  What is it going to take for people to open themselves up.  See that we are all one people, sharing this one planet and that we could accomplish so much by building each other up, rather than by tearing each other down.  

Those are the thoughts and questions that are really filling my head and heart these days.  They are also what keeps me so grateful for the many gifts of friendship that I've been blessed with over the course of my life.  I can't imagine my journey without a single one of you! 

Over the holiday season, I hope my presents will be my presence to my family, my friends and the small parts of the world that I can impact and influence.  By lending my voice and my own abilities to causes that can move this world of our closer to the peace and belonging that we all yearn for, maybe I can be a small ripple in this huge ocean that we co-exist in.  That would be a gift!

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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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