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.
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.
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!
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.
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!
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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