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.  

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

​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. 

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!

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!
    

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

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