I met with my minister before moving to eganville and retiring to discuss my future plans. since I was considering a spiritual counseling degree, it seemed logical to discuss it with my minister. she asked me about the plans and my history with religion and my spirituality, to which I could humerously answer that "I was not always on speaking terms with God."
in the course of our conversation about my plans came the inevitable and most frequent asked questions "how did you know and long did you know connor had cerebral palsy?"
the answer is at once both simple and complicated : I always knew, although the official diagnosis took a week of testing at Hospital for Sick children, when Connor was 7 months old. Further testing at 15months added to the mix.. but I also never knew; or at least, never wanted to know.
the diagnosis is simple, test for everything, and elimate all other possible causes of spasticity, if everything else is negative, what you are left with is Cerebral palsy--translated, meaning brain damage.
I really didnt need a pediatrician to confirm that diagnosis for me; I had always know. Always, probably, long before I ever had children. When I was a young nurse working in Edmonton, on a busy pediatric unit, we cared for meany infants and children with CP. all of their symptomes and characteristics were similar and none of them were pleasant.
I was quite clear and empahtic with the prayers I sent heavenward "Please God, anything but a child with CP." I had been well indcotrinated in their care in the 2 years I spent in edmondton and I had no intrest in renewing my aquaintance with caring for a child with CP, let alone raising one.
so when my perfect 7lb 6 oz perfect baby boy made his dramatic enterance into the world, I NEVER gave it a second thought that he was more than he seemed at that moment.
When my husband commented how "stiff" Connor was in the bath tub or warm water, I dismissed any fears and never gave it a second thought. whe Connor did not sit, roll, crawl, reach or do anything that his brother had done by the milestones, I placated my fear by reassuring myself and max that it was because Jarrett was so busy that Connor never needed to do anything. When my family, friends, and co-workers noted and brought forth COnnor's physical shortcomings and questioned our parenting as to unconcerned, I lashed out angrily, even accusing my mother of wanting somehting to be wrong with him so she would have something more to worry about and have people pay attention to her for. (to her dying day she did not forgive me for that ) but I never thought that anything was wrong.
but deep down inside, I always knew.
I asked our doctor about it, who asked a pediatrician, who admitted us to sick kids. I should have known then. I should have known when our pediatrician took me out to breakfast and offered to pay! yet, I was still surprised. but in a deep dark cavern of conciousness, the seed of doubt had always been there.
snipets quotes of novels about children who had cerebral palsy haunted me, even though I had read them in adolecence. Observations of other parents whose children I had nursed washed through my rain leaving thier imprint in my memory, and feeding my nagging fear that the thing I had begged God not to include in my life was going to manifest itself in my perfect second born son.
it was that fear that made me beilieve that it could NEVER happen. but in my brain, the sensible part of my brain, I told myself that it had already happened and there was nothing I could change about it.
so, although I raled against God (and sometimes still do), I also knew that the reality of Connor's diagnosis would alsways be with me and I would never be able to do anything about it.
25 years later, it can be difficult to remember all these details and even more difficult to make any sense of it or justify my thoughts, especially looking at what Connor has accomplished with, because of and in spite of his disability. I often wonder if he would have been so driven, had he been born able bodied. the fear of having a child with CP was always mine--not Max's nor Connor's.
where do these larger than life "biggest fears" come from???
do we have some prior insight that tells us what we may have to face? as if to say it really wont be that bad. I like to think so and when new friends or co-workers ask me "when did you find out Connor had CP? When did you know?"
My answer is never and always.
thoughts,ideas and lessons that I have learned through the years of raising our special sons.
Sunday, 17 January 2016
Saturday, 16 January 2016
I spend a lot of time on trains--no its not a country song
I spend a lot of time on trains. I know that it sounds like a title of a country song, but it is actually jut an observation of the truth. when the boys were small, Jarrett was fascinated with trains so I would use every opportunity to use the train and ride the big machines of his dreams. easy since the gotrain was the fastest way to downtown Toronto from our house.
there is something elemental about the train: it produces a visceral response unlike any other form of transportation. perhaps, it is the assault of your senses all at once: the smell of the diesel fuel, the rumble of the floor as the steel wheels ride the rails, the sound of engine and the screaming whistle as it announces the departure or arrival. all combine into an experience like no other; or it could be the historical romance of the train; our first form of mass transit, whose tracks were built with the blood and tears of our newly budding nation.
Trains are part of most modern art forms: paintings of the formation of Canada as a nation, writings by our foremost authors and songs of various genres that detail their history and cement their place in our lives. I wish that it was one of these artistic reasons are why I love the train. but at the heart of it, I am always Connor's pragmatic mother.
So why do I love trains?? because 8 years ago, for the first time, Connor and I were able to travel independent of help all because of the VIA rail train.
I had already discovered that our gotrain was the easiest for day trips to Toronto but it wasn't until Connor's first Christmas home from university that I truly discovered the beauty and joy of train travel.
When travelling with VIA rail, a person in a wheelchair travels first class, since this is the only car large enough to accommodate the wheelchair. Unfortunately, the reason behind this is not as altruistic as it sounds. VIA rail fought this accommodation for 10 years and millions of dollars, the result of which was a retrofit of their business class cars. It is even more complicated. in order for the person in the wheelchair to travel, they must have their own attendant if they require ANY assistance. (I will be honest, I did not mind since I got to travel first class!) VIA's answer to a "wheelchair lift" is a narrow manual contraption that requires manoeuvres of a paraplegic Houdini.
To be fair, trains apparently last much longer than any other form of transportation, so retrofitting was a sensible option and caring for someone with a disability is not something you want to be thrown into, so it is only reasonable to provide your own attendant.
However, I do believe that they could spring for a reasonable facsimile of a lifting system; or at least one that does not resemble a forklift on steroids.
Connor had only been away from home 3 months the first time we rode together. I had flown down to Ottawa so that I had now time to check out what we were getting into and I was still in full blown helicopter mother hen mode. We did not know that we were actually travelling first class, only that is where we were sitting--that was my first mistake. as a first class passenger, you sit in a special lounge and board before the other passengers; that way the people assisting the wheelchair occupant know exactly where you are and can pre-board you . I on the other hand was sitting on the wrong side of the terminal: they knew we were there somewhere but couldn't find us! as a result, we almost missed our train.
Wheelchair patrons are loaded with the VIA assistant, they can cross the tracks; other passengers cannot. we had to take a tunnel under the track. If you want to witness a crazy, frantic mother, picture me , unable to find Connor on a train that is about to pull away from the station; trying to make myself understood to the heavily Quebecois staff--it was Ottawa after all!
Despite my flight into insanity, we did find each other and he was well strapped in and comfortably seated. as I noted, I thought we were only sitting in first class, not travelling first class--we were actually travelling first class! Nothing can compare to it! 5 hours of exquisite service and food beyond compare. When we arrived in a snow storm, we were happy, content and relaxed from the trip sharing the glorious memory of being totally spoiled for 5 hours. it was an amazing way to start the festive season.
Since then we have travelled back and forth from Ottawa--together and separate--to various destinations. We are much more savvy about the loading and unloading routine:all the ins and outs of the lounge, lift and washrooms. we have met some extraordinary people who have shared our seats and shard our lives. the universe always seems to have the exactly right person share our trip at exactly the right time. all have amazing narratives of their own to enrich our own. I never think of those 5 hours as wasted time--always as some new network or learning experience. Connor is always welcomed on the train and quite frankly is spoiled rotten! the staff dote on him and many, especially at the Ottawa station have become familiar faces, always looking out for us. the train has truly turned out to be "The most civilized way to travel"--at least from Ottawa with my boy.
there is something elemental about the train: it produces a visceral response unlike any other form of transportation. perhaps, it is the assault of your senses all at once: the smell of the diesel fuel, the rumble of the floor as the steel wheels ride the rails, the sound of engine and the screaming whistle as it announces the departure or arrival. all combine into an experience like no other; or it could be the historical romance of the train; our first form of mass transit, whose tracks were built with the blood and tears of our newly budding nation.
Trains are part of most modern art forms: paintings of the formation of Canada as a nation, writings by our foremost authors and songs of various genres that detail their history and cement their place in our lives. I wish that it was one of these artistic reasons are why I love the train. but at the heart of it, I am always Connor's pragmatic mother.
So why do I love trains?? because 8 years ago, for the first time, Connor and I were able to travel independent of help all because of the VIA rail train.
I had already discovered that our gotrain was the easiest for day trips to Toronto but it wasn't until Connor's first Christmas home from university that I truly discovered the beauty and joy of train travel.
When travelling with VIA rail, a person in a wheelchair travels first class, since this is the only car large enough to accommodate the wheelchair. Unfortunately, the reason behind this is not as altruistic as it sounds. VIA rail fought this accommodation for 10 years and millions of dollars, the result of which was a retrofit of their business class cars. It is even more complicated. in order for the person in the wheelchair to travel, they must have their own attendant if they require ANY assistance. (I will be honest, I did not mind since I got to travel first class!) VIA's answer to a "wheelchair lift" is a narrow manual contraption that requires manoeuvres of a paraplegic Houdini.
To be fair, trains apparently last much longer than any other form of transportation, so retrofitting was a sensible option and caring for someone with a disability is not something you want to be thrown into, so it is only reasonable to provide your own attendant.
However, I do believe that they could spring for a reasonable facsimile of a lifting system; or at least one that does not resemble a forklift on steroids.
Connor had only been away from home 3 months the first time we rode together. I had flown down to Ottawa so that I had now time to check out what we were getting into and I was still in full blown helicopter mother hen mode. We did not know that we were actually travelling first class, only that is where we were sitting--that was my first mistake. as a first class passenger, you sit in a special lounge and board before the other passengers; that way the people assisting the wheelchair occupant know exactly where you are and can pre-board you . I on the other hand was sitting on the wrong side of the terminal: they knew we were there somewhere but couldn't find us! as a result, we almost missed our train.
Wheelchair patrons are loaded with the VIA assistant, they can cross the tracks; other passengers cannot. we had to take a tunnel under the track. If you want to witness a crazy, frantic mother, picture me , unable to find Connor on a train that is about to pull away from the station; trying to make myself understood to the heavily Quebecois staff--it was Ottawa after all!
Despite my flight into insanity, we did find each other and he was well strapped in and comfortably seated. as I noted, I thought we were only sitting in first class, not travelling first class--we were actually travelling first class! Nothing can compare to it! 5 hours of exquisite service and food beyond compare. When we arrived in a snow storm, we were happy, content and relaxed from the trip sharing the glorious memory of being totally spoiled for 5 hours. it was an amazing way to start the festive season.
Since then we have travelled back and forth from Ottawa--together and separate--to various destinations. We are much more savvy about the loading and unloading routine:all the ins and outs of the lounge, lift and washrooms. we have met some extraordinary people who have shared our seats and shard our lives. the universe always seems to have the exactly right person share our trip at exactly the right time. all have amazing narratives of their own to enrich our own. I never think of those 5 hours as wasted time--always as some new network or learning experience. Connor is always welcomed on the train and quite frankly is spoiled rotten! the staff dote on him and many, especially at the Ottawa station have become familiar faces, always looking out for us. the train has truly turned out to be "The most civilized way to travel"--at least from Ottawa with my boy.
Wednesday, 22 October 2014
Mothers and other strangers
This mothers day, I had the privilege of taking my mothers ashes back to her home town in NFLD-Springdale, to be exact. I grew up in Scarborough but in the words of John Denver, whenever I go to Newfie, I am "coming home to a place I've never been before." when I was growing up and to the time she passed my mother marvelled at my choices in entertainment; specifically, camping. Over and over again, whenever I described our property or a recent camping trip, mother would remark "I don't know where you came from; you certainly didn't get it from me!" and yet, ironically, that is exactly where it came from--my love of nature, outdoors, living off the land and being rustic--that is the NFLD half of me.
I looked at the hills, mountains really, framing the bay of the ocean that hugged the shore of the rising tides and wondered out loud "how could you ever leave!" as if she could hear me through all the miles and differences that separated us all of our lives. Yet, we were both women out of time that did not fit into the worlds we were born to: she was a fresh soul full of wonder, chafing at the bindings that her small, pentecostal fishing village upbringing wrapped around her. she was a modern woman who longed to be carefree. she wanted to work, live independently of a man and be a single mother. but, she was born in 1934 and raised her children in the chafing suburbia 1960's mainland Canada afforded.
In my memories she was never happy, never content and always longing for something else; she longed to be wealthy and travel and coveted anything of perceived value that she ever owned. I never saw her going out looking anything but her best. Always perfumed, made up matching jewelry, perfect clothes (usually designer) and not a hair out of place. my clear face, tee shirts, jeans and bouncing pony tail would routinely set her teeth on edge.
I was born 200 years too late. I am most comfortable in my small cabin, I never dress up, except for special occasions, rarely wear makeup and the jewelry on my ring finger is pretty much it. I don't think I have ever used up a complete container of any kind of make up and my pierced ears grew over because I kept forgetting to put earrings in! I hate and despise the rush of modern society and the disconnection that goes with it. I feel real satisfaction working hard in the wilderness, hauling water, cooking over a naptha or wood stove and going to bed early. I love the smell and glow of kerosene lanterns--the same ones that she complained having to do schoolwork to.
as I gazed at the glacier sands the rocks rising out of the shore and the seemingly, never ending sea as it stretches out of the bay, I am awestruck by the thought that my life would have been very different if my mother had stayed any of the times that she returned to Springdale.
However, there is also the knowledge that a hot house flower such as herself could have never survived in the harshness that was and is her birthplace.
Yet, it was here that she wanted to come to has her final resting place. Like the monarch butterflies or the salmon that climb the falls on the Indian river, she wanted to come "home." It seemed fitting that I would be the one to take her back from a practical standpoint. I had been to NFLD more recently and more often than my sister. Since I was the religious one, I was comfortable saying the prayers and doing the other things involved in laying her to rest. but mostly, it was a debt that I had to pay. to my mother for not having the courage and fortitude to stand up and fight for her life and sanity, no matter how much it might have angered her or crushed me. to my sister, for leaving her when she needed me most and seeing her struggles as some kind of life lesson that had to be learned. to my husband, for dividing his loyalty, to prove his love for me. He missed the chance to say goodbye to a woman he loved as much as his own flesh and blood.
But mostly, the debt was to myself: to forgive myself for any slights and hurts I felt I may have inflicted upon my mother during her life, to achieve the peace that I longed for during her life. My mothers passing brought me back to my faith, both figuratively and literally. as with other times in my life, I had neglected my spiritual health for years. when dealing with my mother, the usual emotions were fear and anger; fear of how she would hurt me next and anger at myself for letting it happen. consequently, I was on the outs with God, mother goddess, higher power or spiritual awareness--whatever name you want to give it.
2 years ago when she passed, I was completely isolated from all but my nuclear family. even though I was aware of her celebration of life; I also knew I would be as welcome as a skunk at a tea party! so I asked my friend Sue, if I could join her at church; knowing that Sue is the finest, most authentic person I know, I knew she would welcome me with open arms and she did.
For 2 years now, I found what I was missing: faith, wisdom, strength and music. I have discovered depths in myself that I did not know were there. What a gift! and if I was completely honest, irregardless of the initial impetus, this gift came from my mother.
so to repay and pay it forward, I sat by my grandparents and now my mothers final resting place; at least, her physical resting place. Good or bad she lives within me and my sister. her voice is still heard in my head when my hair is messy or my clothes are wrinkled, when I sing harmony or when I talk to my children a certain way. I am hoping that Heather and I were correct and she really did want to come home. I know she spoke once that if she was buried in Springdale, we wouldn't come to visit!( like even in death she would be afraid that her family wouldn't want to be around her!)
Little did she know how much I considered this place my home too. it wont be my last visit. This is the place of some of my best childhood memories erupt from. this is the place where I fit, even if she didn't. this is the ocean, the rocks, the rivers the music, the sand that flows through me. But most of all it is where she and my ancestors are.
I looked at the hills, mountains really, framing the bay of the ocean that hugged the shore of the rising tides and wondered out loud "how could you ever leave!" as if she could hear me through all the miles and differences that separated us all of our lives. Yet, we were both women out of time that did not fit into the worlds we were born to: she was a fresh soul full of wonder, chafing at the bindings that her small, pentecostal fishing village upbringing wrapped around her. she was a modern woman who longed to be carefree. she wanted to work, live independently of a man and be a single mother. but, she was born in 1934 and raised her children in the chafing suburbia 1960's mainland Canada afforded.
In my memories she was never happy, never content and always longing for something else; she longed to be wealthy and travel and coveted anything of perceived value that she ever owned. I never saw her going out looking anything but her best. Always perfumed, made up matching jewelry, perfect clothes (usually designer) and not a hair out of place. my clear face, tee shirts, jeans and bouncing pony tail would routinely set her teeth on edge.
I was born 200 years too late. I am most comfortable in my small cabin, I never dress up, except for special occasions, rarely wear makeup and the jewelry on my ring finger is pretty much it. I don't think I have ever used up a complete container of any kind of make up and my pierced ears grew over because I kept forgetting to put earrings in! I hate and despise the rush of modern society and the disconnection that goes with it. I feel real satisfaction working hard in the wilderness, hauling water, cooking over a naptha or wood stove and going to bed early. I love the smell and glow of kerosene lanterns--the same ones that she complained having to do schoolwork to.
as I gazed at the glacier sands the rocks rising out of the shore and the seemingly, never ending sea as it stretches out of the bay, I am awestruck by the thought that my life would have been very different if my mother had stayed any of the times that she returned to Springdale.
However, there is also the knowledge that a hot house flower such as herself could have never survived in the harshness that was and is her birthplace.
Yet, it was here that she wanted to come to has her final resting place. Like the monarch butterflies or the salmon that climb the falls on the Indian river, she wanted to come "home." It seemed fitting that I would be the one to take her back from a practical standpoint. I had been to NFLD more recently and more often than my sister. Since I was the religious one, I was comfortable saying the prayers and doing the other things involved in laying her to rest. but mostly, it was a debt that I had to pay. to my mother for not having the courage and fortitude to stand up and fight for her life and sanity, no matter how much it might have angered her or crushed me. to my sister, for leaving her when she needed me most and seeing her struggles as some kind of life lesson that had to be learned. to my husband, for dividing his loyalty, to prove his love for me. He missed the chance to say goodbye to a woman he loved as much as his own flesh and blood.
But mostly, the debt was to myself: to forgive myself for any slights and hurts I felt I may have inflicted upon my mother during her life, to achieve the peace that I longed for during her life. My mothers passing brought me back to my faith, both figuratively and literally. as with other times in my life, I had neglected my spiritual health for years. when dealing with my mother, the usual emotions were fear and anger; fear of how she would hurt me next and anger at myself for letting it happen. consequently, I was on the outs with God, mother goddess, higher power or spiritual awareness--whatever name you want to give it.
2 years ago when she passed, I was completely isolated from all but my nuclear family. even though I was aware of her celebration of life; I also knew I would be as welcome as a skunk at a tea party! so I asked my friend Sue, if I could join her at church; knowing that Sue is the finest, most authentic person I know, I knew she would welcome me with open arms and she did.
For 2 years now, I found what I was missing: faith, wisdom, strength and music. I have discovered depths in myself that I did not know were there. What a gift! and if I was completely honest, irregardless of the initial impetus, this gift came from my mother.
so to repay and pay it forward, I sat by my grandparents and now my mothers final resting place; at least, her physical resting place. Good or bad she lives within me and my sister. her voice is still heard in my head when my hair is messy or my clothes are wrinkled, when I sing harmony or when I talk to my children a certain way. I am hoping that Heather and I were correct and she really did want to come home. I know she spoke once that if she was buried in Springdale, we wouldn't come to visit!( like even in death she would be afraid that her family wouldn't want to be around her!)
Little did she know how much I considered this place my home too. it wont be my last visit. This is the place of some of my best childhood memories erupt from. this is the place where I fit, even if she didn't. this is the ocean, the rocks, the rivers the music, the sand that flows through me. But most of all it is where she and my ancestors are.Tuesday, 14 January 2014
Tenacity and determination--there is nothing that can beat it
I have long lamented Connor's intellect and how over the years it has challenged me over and over again. In truth, at times, I felt like we grew up together. He dragged me kicking and screaming along his learning path, forcing me to at least keep up. My lack of grammar and writing skills had become somewhat of a chuckle between friends and family, until he decided that we would both learn the use of proper punctuation and grammar rules--some of which were long forgotten. up until then, I believe I had never used a semi-colon in a sentence. now I use them regularly.
When he was 4 he became aware that Cerebral Palsy was caused by a brain injury, mostly because we were always open and forthright about his condition. He in turn asked what a brain looked like, so I drew a picture for him. Needless to say, this was not sufficient for him. since this was before Dr. Google had entered our lives, he was not satisfied until I dug out my nursing anatomy text book and showed him an actual photograph of a brain with a full explanation of each part, including the motor cortex where the cause of his disability could be found.
Remembering that he was only four, this level of tenacity should have served as a warning of things to come. this child would not give up despite any and all protestations on my part! (since Max's major philosophy is its "No big deal" he rarely said no to Connor and left that to me!)
Throughout his childhood, the teenage years and university career, he has continued this trend: ignoring obstacles that life seems to throw in his path. In grade 2 he was diagnosed with a severe visual learning disability. the prognosis was that it was doubtful that he would EVER read past a grade 7 level. at that time he was not keeping up with his peers in reading and we had to make a decision to drop his French in order to concentrate more effort on English. The rationale that we were given was that the level of his learning impairment was so great that it was doubtful he would be able to finish the English curriculum let alone the French. He still cannot speak or read French; however, he has achieved an A+ average in Latin, Greek, Hebrew and has a Minor in English. Needless to say he was determined to prove them wrong.
it was not just in academics that Connor thought he should expand our knowledge. everything was under scrutiny and up for review: style, food choices, political affiliations and prejudices all fell under his tenacious determination.
when he realized he was gay and had an extremely homophobic father, he started watching Will and Grace. Since he and Max spent many hours together, the show was watched by both of them. Soon Max's erroneous stereotypes began to fall. while he was still shocked when Connor came out; he did not have only the negative reactions that might have been the case before the television show. to this day Max refers to Will and Grace when looking for positive gay role models (and still remains flabbergasted that Connor planned it all.)
In high school, Connor's appetite for literature was voracious. one book did not suffice, nor would an abridged audio copy of a novel satisfy. Audiobooks, digital downloads and Kindle readers had not become popular, so I spent much of Connor's high school years scanning texts and novels and scouring the Internet for unabridged copies of audiobooks on cd's. One Christmas, when he was desperate to read War and Peace I spent more on the MP3 version of the book than I did on the portable CD player to go with it.
although obtaining digital copies of texts has gotten easier with 100's more choices, Connor's appetite for knowledge has grown larger still. Luckily, the scanners have gotten faster, yet there are still days that I spend hours turning pages of an obscure tome so that he can read it and include it in an overly detailed essay. Some days tenacious is not a big enough word.
Since I now have his old computer with his word to text program and google has a wonderful skydrive option, Connor has discovered that he can now mark quotes and upload an entire book onto the skydrive, in order to have me extract the quotes and organize them for his thesis. also thanks to modern technology, he can dictate his work to me and others over Skype to ease the strain on his vocal chords that dictating into an ever uncooperative and creative voice recognition software program. O joy o bliss, I should be given my honary degree soon.
Recently, Connor moved into his own apartment into community care. For me this was a dream come try and a moment I was never totally sure was ever going to happen in my lifetime. I always assumed for Connor to live on his own, I would have to be with him. It has been a rather difficult transition from living in Rez as a young student, to a grown adult man with his own apartment. His schedule, experienced medical care givers, and suburban lifestyle leave little to challenge his intellect. I think he imagined having dinner parties and entertaining his friends but reality has a tendency to bite. However, he was well situated in a 3bdrm apt almost as big as our house. seeing how he had so much space and was planning on having people over, many of whom were musicians, I decided to take him my electronic keyboard, in the event that one of his friends wanted to play. I had no more set up the keyboard when he wheeled up and started plucking out notes. Since he had never taken any music lessons and had such a severe learning (not to mention physical) disability, I assumed he would not be able to grasp the basic musical concepts. I could not have been more wrong. I had no more stepped back from the keyboard when Connor started firing questions about advanced musical theory. Apparently, one of his friends had tutored him a few months before. Connor had internalised it and waited for an opportunity to apply his new found knowledge--I did mention tenacious and determined. Many of his questions were well beyond the scope of my 30 year old my musical theory knowledge and my music for dummies book was well packed away. but like I have said--determined. He did not give up trying to play. By the end of the weekend he had mastered a few scales and an easy version of Ode to Joy; my more than I myself could have ever done in that time frame. Here he was barely able to use one finger, plucking away longer and more patiently than some trained musicians, in pursuit of a scale. On the grad scheme of musicality, a couple of scales and an easy play version of a song, may not be much; but considering his aptitude, understanding and determination it took to achieve that much, would be comparable to me sitting down and playing a Beethoven piano Concerto.
Tenacity and determination: it is what allows us to accomplish the near impossible and Connor has an over abundance of both.
When he was 4 he became aware that Cerebral Palsy was caused by a brain injury, mostly because we were always open and forthright about his condition. He in turn asked what a brain looked like, so I drew a picture for him. Needless to say, this was not sufficient for him. since this was before Dr. Google had entered our lives, he was not satisfied until I dug out my nursing anatomy text book and showed him an actual photograph of a brain with a full explanation of each part, including the motor cortex where the cause of his disability could be found.
Remembering that he was only four, this level of tenacity should have served as a warning of things to come. this child would not give up despite any and all protestations on my part! (since Max's major philosophy is its "No big deal" he rarely said no to Connor and left that to me!)
Throughout his childhood, the teenage years and university career, he has continued this trend: ignoring obstacles that life seems to throw in his path. In grade 2 he was diagnosed with a severe visual learning disability. the prognosis was that it was doubtful that he would EVER read past a grade 7 level. at that time he was not keeping up with his peers in reading and we had to make a decision to drop his French in order to concentrate more effort on English. The rationale that we were given was that the level of his learning impairment was so great that it was doubtful he would be able to finish the English curriculum let alone the French. He still cannot speak or read French; however, he has achieved an A+ average in Latin, Greek, Hebrew and has a Minor in English. Needless to say he was determined to prove them wrong.
it was not just in academics that Connor thought he should expand our knowledge. everything was under scrutiny and up for review: style, food choices, political affiliations and prejudices all fell under his tenacious determination.
when he realized he was gay and had an extremely homophobic father, he started watching Will and Grace. Since he and Max spent many hours together, the show was watched by both of them. Soon Max's erroneous stereotypes began to fall. while he was still shocked when Connor came out; he did not have only the negative reactions that might have been the case before the television show. to this day Max refers to Will and Grace when looking for positive gay role models (and still remains flabbergasted that Connor planned it all.)
In high school, Connor's appetite for literature was voracious. one book did not suffice, nor would an abridged audio copy of a novel satisfy. Audiobooks, digital downloads and Kindle readers had not become popular, so I spent much of Connor's high school years scanning texts and novels and scouring the Internet for unabridged copies of audiobooks on cd's. One Christmas, when he was desperate to read War and Peace I spent more on the MP3 version of the book than I did on the portable CD player to go with it.
although obtaining digital copies of texts has gotten easier with 100's more choices, Connor's appetite for knowledge has grown larger still. Luckily, the scanners have gotten faster, yet there are still days that I spend hours turning pages of an obscure tome so that he can read it and include it in an overly detailed essay. Some days tenacious is not a big enough word.
Since I now have his old computer with his word to text program and google has a wonderful skydrive option, Connor has discovered that he can now mark quotes and upload an entire book onto the skydrive, in order to have me extract the quotes and organize them for his thesis. also thanks to modern technology, he can dictate his work to me and others over Skype to ease the strain on his vocal chords that dictating into an ever uncooperative and creative voice recognition software program. O joy o bliss, I should be given my honary degree soon.
Recently, Connor moved into his own apartment into community care. For me this was a dream come try and a moment I was never totally sure was ever going to happen in my lifetime. I always assumed for Connor to live on his own, I would have to be with him. It has been a rather difficult transition from living in Rez as a young student, to a grown adult man with his own apartment. His schedule, experienced medical care givers, and suburban lifestyle leave little to challenge his intellect. I think he imagined having dinner parties and entertaining his friends but reality has a tendency to bite. However, he was well situated in a 3bdrm apt almost as big as our house. seeing how he had so much space and was planning on having people over, many of whom were musicians, I decided to take him my electronic keyboard, in the event that one of his friends wanted to play. I had no more set up the keyboard when he wheeled up and started plucking out notes. Since he had never taken any music lessons and had such a severe learning (not to mention physical) disability, I assumed he would not be able to grasp the basic musical concepts. I could not have been more wrong. I had no more stepped back from the keyboard when Connor started firing questions about advanced musical theory. Apparently, one of his friends had tutored him a few months before. Connor had internalised it and waited for an opportunity to apply his new found knowledge--I did mention tenacious and determined. Many of his questions were well beyond the scope of my 30 year old my musical theory knowledge and my music for dummies book was well packed away. but like I have said--determined. He did not give up trying to play. By the end of the weekend he had mastered a few scales and an easy version of Ode to Joy; my more than I myself could have ever done in that time frame. Here he was barely able to use one finger, plucking away longer and more patiently than some trained musicians, in pursuit of a scale. On the grad scheme of musicality, a couple of scales and an easy play version of a song, may not be much; but considering his aptitude, understanding and determination it took to achieve that much, would be comparable to me sitting down and playing a Beethoven piano Concerto.
Tenacity and determination: it is what allows us to accomplish the near impossible and Connor has an over abundance of both.
Roughing it Cabin Style
It started when I went to bible camp; I was 14 and a friend invited me along. thus began my lifelong love of camping. Now that I am in my 50's I have downgraded to semi-roughing it. Not the wilderness in the fall with nothing but a tent, a backpack and a fire to cook over. Still, I love to be at my 2 acre wilderness with its 8x12 cabin and outhouse.
I suppose since I have a bed that is off the ground, a table to eat at and a naphtha stove, it qualifies more as an episode of pioneer days than camping; after all, we have an outhouse that is built of hardwood no less with a padded toilet seat; a water jug with a hand pump, so the water runs if you work at it a little (not warm mind you, but running nonetheless) and we have lights: Coleman naphtha and my beloved kerosene lanterns.(I put one in the outhouse just to bug Jarrett!)
Still I am sure that a long weekend at our cabin in October would be more or less torture for anyone else but like minded ancient throw backs like ourselves. My mother never understood my passion for the outdoors; she went as far as to say that "she had no idea where I came from!" (conveniently forgetting that she was raised in rural Newfoundland in the 1930's") My father liked camping, especially bluegrass campouts, but given his propensity toward cleanliness, he needed a trailer with at least a warm shower. my sisters idea of camping included an outlet for a curling iron. So when I found out that Max shared my love of the outdoors and shedding the comforts of modern life--at least for awhile--I was ecstatic. when the boys were young we camped in tents. indeed, 3 weeks after having a Caesarian birth for Connor we went tenting at Max's sisters property. it rained all weekend and Connor echoed the rain by crying all night. I suppose I should have taken that as an omen and a comment on Connor's future opinion of camping! I asked Max to leave in the mornings torrential rainstorm and my brother in law asked me if I was a fair weather camper! No not fair weather camper; just a fresh post operative one!
I am not sure if there is one particular part of camping or being at our property that draws me to it or that I like more than others. Part of is that it was a manageable and inexpensive way to travel with young children in the beginning. once we realised that tenting with Connor and a wheelchair was problematic at best, we were blessed by the best Christmas present ever: a small Boler trailer given to our by Max's dad one Christmas. these fibreglass eggs were manufactured to be towed by small cars. the flyer for them tells you that they sleep 4. I will tell you that it technically does; practically, you have to be very small people, and small is a word that is rarely used to describe us. But, as always, we were happy with what we had and loaded that little trailer up to its ceiling sometimes. by the time Jarrett was 10 he had opted for his own tent, having fallen out of the top bunk in the trailer one too many times.
we started camping in Nipissing at a friends campground when Connor was 7. the first time we went, we were meeting up with my dad for a bluegrass campout. as soon as I arrived, I felt like I had come home. I began a quest to find a piece of property that we could afford, that was on some kind of water and that was suitable for Connor. 5 years later we had it. "The Property" I suppose that I should have come up with some kind of fanciful name like Linda's lucky valley or Steele's shaingrala, but some how, "the property" fit and stuck. it was 2 acres of former farm land with 150 frontage on a year round road. it backed onto a large creek that fed into a river. there was a wheelchair accessible government dock on the river, with a level driveway and boat launch, perfect for driving a boat or wheelchair right to the water and therefore perfect for Connor. Since it was originally a farm, for the most part it was level and an easy drive in for him; only the valley to the creek was steep but since we could access the water from the dock it was perfect! at least that is how it seemed to me.
by the time we got it, my father had passed away and never got to see it, but I like to think he might of approved. My mother was sure that I had lost my mind and told me as much and as often as she could. although we offered to take her up many times to see it, she always had excuses and would not come. Probably because her idea of camping involved room service at the Holiday inn.
I did manage to get my mother in law and sister in laws up for a visit once. we rented a housekeeping cottage down the road from the property and took them over for a visit. My Mother in law raised her eyebrows, which said her opinion loud and clear. One sister in law was concerned how steep it was--luckily I had made sure there was a level government dock at the end of our road with a boat launch--so steepness was not an issue.
Ironically, it was Max's dad that loved ti the best and spent weekends camping with us; but then again, he has always been the roughest of the bunch. My best friend Diana, shook her head and said she thought it would be way too much work and she was afraid that we would regret it. (I reminded her of this when we had our 10th anniversary campout there!)
those 10 years involved family holidays, weekends with the Youdelis' and time with just Max and I on our own.
Jarrett was in heaven and lets just say, as with the bluegrass festivals, Connor was a good sport. When the kids were teenagers, camping definitely had a more urban flavor. Diana and Grant docked their boat there and days involved volleyball, margaritas , fondue dinners and late night trivial pursuit games. Grant and Diana traveled with a 5000 watt generator that Grant commented had only ever been fired up for toasters and blenders in 5 years. Definitely not pioneer style. one of the most memorable trips was just before Connor
moved to Ottawa for school. this was one of the last times that Connor camped with us. even with our cabin, camping is still problematic for him; oh well, one Steele has to be Urban!
So now, once again it is the two of us. we try to come up as often as possible but it is never enough for me. I truly believe I would live in the wilderness if it was possible. I cannot say what appeals to me the most. i love the privacy and the feeling that we are the only people in the world. could be my xenophobia coming out. I like how there are few distractions to take me away from the important things that I want to do. I like that there is no rushed feeling; that I should be moving or accomplishing something more important. but mostly, i like how hard I have to work and plan for the simplest things like doing dishes: get the water from the spring, get the stove going, heat the water and pour it over the dishes and wash. you have to plan, think and work just to get dishes done. (don't even get me started on how I cooked a thanksgiving dinner!) I appreciate those clean dishes and even the hot water ten times more than I do at home just turning on a tap or a knob on the dishwasher.
Perhaps what I love most about the property is that it helps me recognize all the reasons that I am OK with being a square peg in a round hole of today's world. I cognitively acknowledge that without today's modern technology Connor's world would be ridiculously difficult and his successes would be nearly impossible. but that comes at a high price tag such as a panic attack when the rogers wireless network crashed. our instant, disposable effortless world has yielded us a life that results in less time together, more work hours and less play time. I would not want to return to a time of famine, disease and poverty nor would I trade my rights as a women and be someones work horse or piece of chattel. However, when those pressures of today's world become too much for this less than modern girl, I know where my retreat is: The Property and camping.
I suppose since I have a bed that is off the ground, a table to eat at and a naphtha stove, it qualifies more as an episode of pioneer days than camping; after all, we have an outhouse that is built of hardwood no less with a padded toilet seat; a water jug with a hand pump, so the water runs if you work at it a little (not warm mind you, but running nonetheless) and we have lights: Coleman naphtha and my beloved kerosene lanterns.(I put one in the outhouse just to bug Jarrett!)
Still I am sure that a long weekend at our cabin in October would be more or less torture for anyone else but like minded ancient throw backs like ourselves. My mother never understood my passion for the outdoors; she went as far as to say that "she had no idea where I came from!" (conveniently forgetting that she was raised in rural Newfoundland in the 1930's") My father liked camping, especially bluegrass campouts, but given his propensity toward cleanliness, he needed a trailer with at least a warm shower. my sisters idea of camping included an outlet for a curling iron. So when I found out that Max shared my love of the outdoors and shedding the comforts of modern life--at least for awhile--I was ecstatic. when the boys were young we camped in tents. indeed, 3 weeks after having a Caesarian birth for Connor we went tenting at Max's sisters property. it rained all weekend and Connor echoed the rain by crying all night. I suppose I should have taken that as an omen and a comment on Connor's future opinion of camping! I asked Max to leave in the mornings torrential rainstorm and my brother in law asked me if I was a fair weather camper! No not fair weather camper; just a fresh post operative one!
I am not sure if there is one particular part of camping or being at our property that draws me to it or that I like more than others. Part of is that it was a manageable and inexpensive way to travel with young children in the beginning. once we realised that tenting with Connor and a wheelchair was problematic at best, we were blessed by the best Christmas present ever: a small Boler trailer given to our by Max's dad one Christmas. these fibreglass eggs were manufactured to be towed by small cars. the flyer for them tells you that they sleep 4. I will tell you that it technically does; practically, you have to be very small people, and small is a word that is rarely used to describe us. But, as always, we were happy with what we had and loaded that little trailer up to its ceiling sometimes. by the time Jarrett was 10 he had opted for his own tent, having fallen out of the top bunk in the trailer one too many times.
we started camping in Nipissing at a friends campground when Connor was 7. the first time we went, we were meeting up with my dad for a bluegrass campout. as soon as I arrived, I felt like I had come home. I began a quest to find a piece of property that we could afford, that was on some kind of water and that was suitable for Connor. 5 years later we had it. "The Property" I suppose that I should have come up with some kind of fanciful name like Linda's lucky valley or Steele's shaingrala, but some how, "the property" fit and stuck. it was 2 acres of former farm land with 150 frontage on a year round road. it backed onto a large creek that fed into a river. there was a wheelchair accessible government dock on the river, with a level driveway and boat launch, perfect for driving a boat or wheelchair right to the water and therefore perfect for Connor. Since it was originally a farm, for the most part it was level and an easy drive in for him; only the valley to the creek was steep but since we could access the water from the dock it was perfect! at least that is how it seemed to me.
by the time we got it, my father had passed away and never got to see it, but I like to think he might of approved. My mother was sure that I had lost my mind and told me as much and as often as she could. although we offered to take her up many times to see it, she always had excuses and would not come. Probably because her idea of camping involved room service at the Holiday inn.
I did manage to get my mother in law and sister in laws up for a visit once. we rented a housekeeping cottage down the road from the property and took them over for a visit. My Mother in law raised her eyebrows, which said her opinion loud and clear. One sister in law was concerned how steep it was--luckily I had made sure there was a level government dock at the end of our road with a boat launch--so steepness was not an issue.
Ironically, it was Max's dad that loved ti the best and spent weekends camping with us; but then again, he has always been the roughest of the bunch. My best friend Diana, shook her head and said she thought it would be way too much work and she was afraid that we would regret it. (I reminded her of this when we had our 10th anniversary campout there!)
those 10 years involved family holidays, weekends with the Youdelis' and time with just Max and I on our own.
Jarrett was in heaven and lets just say, as with the bluegrass festivals, Connor was a good sport. When the kids were teenagers, camping definitely had a more urban flavor. Diana and Grant docked their boat there and days involved volleyball, margaritas , fondue dinners and late night trivial pursuit games. Grant and Diana traveled with a 5000 watt generator that Grant commented had only ever been fired up for toasters and blenders in 5 years. Definitely not pioneer style. one of the most memorable trips was just before Connor
moved to Ottawa for school. this was one of the last times that Connor camped with us. even with our cabin, camping is still problematic for him; oh well, one Steele has to be Urban!
So now, once again it is the two of us. we try to come up as often as possible but it is never enough for me. I truly believe I would live in the wilderness if it was possible. I cannot say what appeals to me the most. i love the privacy and the feeling that we are the only people in the world. could be my xenophobia coming out. I like how there are few distractions to take me away from the important things that I want to do. I like that there is no rushed feeling; that I should be moving or accomplishing something more important. but mostly, i like how hard I have to work and plan for the simplest things like doing dishes: get the water from the spring, get the stove going, heat the water and pour it over the dishes and wash. you have to plan, think and work just to get dishes done. (don't even get me started on how I cooked a thanksgiving dinner!) I appreciate those clean dishes and even the hot water ten times more than I do at home just turning on a tap or a knob on the dishwasher.
Perhaps what I love most about the property is that it helps me recognize all the reasons that I am OK with being a square peg in a round hole of today's world. I cognitively acknowledge that without today's modern technology Connor's world would be ridiculously difficult and his successes would be nearly impossible. but that comes at a high price tag such as a panic attack when the rogers wireless network crashed. our instant, disposable effortless world has yielded us a life that results in less time together, more work hours and less play time. I would not want to return to a time of famine, disease and poverty nor would I trade my rights as a women and be someones work horse or piece of chattel. However, when those pressures of today's world become too much for this less than modern girl, I know where my retreat is: The Property and camping.
Monday, 11 November 2013
On the 11th hour of the 11th day of the 11th month, lest we forget
Both my parents served in the Air force. I suppose my overt patriotism could have stemmed from that; however neither was particularly patriotic or instilled the strong sense of country that I have held dear and tried to instill in my children. it could have been the sight of several of my older (and ridiculously handsome) cousins in there various dress uniforms over the years. perhaps it was being a child of the sixties where social unrest and upheaval were the order of the day. Mostly, I think it was the knowledge that my grandmother had been robbed of her childhood when her father was killed in WW1. that thought, that someone who shared my DNA had died fighting for the freedom that we take for granted so much, imprinted on me at an early age. My Nana had worshipped her father and spoke of him often. I have memories of her mother "Nana Martin" who passed when I was almost 5 years old. She was my fathers favourite relative and to the day he died he missed her in his life.
I considered serving myself in the forces; i must admit that part of the appeal was that, as a nurse, I would have automatic officer status thereby, outranking both my parents! it was not too be. this would be a case of the things Max and I should have talked about in more detail before marrying: we both had considered joining and both had been talked out of it by our misguided fathers! so it was not too be.
I have tried to do my best with what I have. I participate in the services and support the poppy campaign for veterans. I try to support veteran rights and be informed about the goings on of our government; although I must admit that Connor is systematically out pacing me in this arena. (be careful what you wish for!)
This year was different. out of a think tank--and I use that term loosely--a government funded organisation called the "Rideau Institute" started a white poppy campaign to coincide with the red poppy campaign of Remembrance day. the public has been outraged. they say that they wanted to start a dialogue about peace not war and felt that the red poppy "glorified" war. I was one of the outraged ones. and although I have frequently been accused of making a "big" deal out of everything, this incident screamed out to me.
so many of my colleagues and patients, over the years, have been refugees or immigrants from war torn, brutal lands. they recount stories that we cannot imagine and have never seen before. Perhaps that is the Rideau Institutes problem: the have never experienced the pain, terror and fear that war brings to a land. and why is that? because in 100years the borders of our nation have not been threatened by war. and why is that? because the veterans and soldiers of our combined armed forces, fought and fight to protect our freedoms and rights that, apparently, so many of us now are taking for granted.
I am sure that the members of this institute have much more education than I do, know more about foreign affairs and the workings of our government. However, I believe that what they did not know more about is the heart of our country. Canadians may not be as loud and boisterous as our American neighbours but we are no less patriotic. I was refreshed to see how much backlash was caused by this silly campaign. for every one positive statement about it there was 100 negative. they got their conversation all right. but I am not sure it was the one they were expecting. I however was once again proud to call this land my home and grateful that for ever man and woman that put their lives on the line so that my children could sleep safely in their beds at night. Below is a letter I left on the institutes website. I have yet to receive a response, nor do I expect one. my hope is that perhaps by my speaking out, it will make at least one person reconsider have a "conversation" next year.
I considered serving myself in the forces; i must admit that part of the appeal was that, as a nurse, I would have automatic officer status thereby, outranking both my parents! it was not too be. this would be a case of the things Max and I should have talked about in more detail before marrying: we both had considered joining and both had been talked out of it by our misguided fathers! so it was not too be.
I have tried to do my best with what I have. I participate in the services and support the poppy campaign for veterans. I try to support veteran rights and be informed about the goings on of our government; although I must admit that Connor is systematically out pacing me in this arena. (be careful what you wish for!)
This year was different. out of a think tank--and I use that term loosely--a government funded organisation called the "Rideau Institute" started a white poppy campaign to coincide with the red poppy campaign of Remembrance day. the public has been outraged. they say that they wanted to start a dialogue about peace not war and felt that the red poppy "glorified" war. I was one of the outraged ones. and although I have frequently been accused of making a "big" deal out of everything, this incident screamed out to me.
so many of my colleagues and patients, over the years, have been refugees or immigrants from war torn, brutal lands. they recount stories that we cannot imagine and have never seen before. Perhaps that is the Rideau Institutes problem: the have never experienced the pain, terror and fear that war brings to a land. and why is that? because in 100years the borders of our nation have not been threatened by war. and why is that? because the veterans and soldiers of our combined armed forces, fought and fight to protect our freedoms and rights that, apparently, so many of us now are taking for granted.
I am sure that the members of this institute have much more education than I do, know more about foreign affairs and the workings of our government. However, I believe that what they did not know more about is the heart of our country. Canadians may not be as loud and boisterous as our American neighbours but we are no less patriotic. I was refreshed to see how much backlash was caused by this silly campaign. for every one positive statement about it there was 100 negative. they got their conversation all right. but I am not sure it was the one they were expecting. I however was once again proud to call this land my home and grateful that for ever man and woman that put their lives on the line so that my children could sleep safely in their beds at night. Below is a letter I left on the institutes website. I have yet to receive a response, nor do I expect one. my hope is that perhaps by my speaking out, it will make at least one person reconsider have a "conversation" next year.
Your Comment Is Awaiting Moderation.
Hello,
I recently learned of your so called “White Poppy” campaign. I am sure that you “wanted to start a conversation” but I am not sure the conversation that was started was the one you intended. First and foremost, I feel you do not truly grasp the purpose of the Poppy Campaign. Living as we do in Canada, with no actual war within our borders for over 100 years, we have become complacent. The actual purpose of the wearing the poppy is that the person believes in their heart of hearts that peace is the only answer: that never again should a man or woman have to fight for freedom and peace. I raised my children to vote in every election, stand tall and sing loud when our anthem plays and keep the silence on the 11th hour of the 11th day of the 11th month. that you would usurp the sacred sacrifice that the veterans and their families have made all in the name of “starting a conversation” is abhorrent and shameful. the very freedom and funding that your received in order to achieve this goal of conversation was paid for with blood, in the hope that their children, our children and children to come, would not have to die for the cause of peace. Apparently, we do need more conversation about war, because without it, the peace that you tout to have a conversation about is meaningless, since obviously it breeds contempt, self importance and ungrateful behaviour. you not only owe an apology to every person touched by war, every veteran that fought for your freedom to draw breath, every citizen who was foolish enough to fund your misguided cause–including, apparently our tax funded government–but you owe an apology to the country that surrounds you in a freedom that others can only dream about. in future, please leave the “conversation” to the people who are actually capable of having it, because truly, you seem to have lost touched with the real society in which we live, in which we behave with honor and charity and in which taking a moment to pin a RED poppy on you lapel, honors those who’s only goal was the peace and freedom of our land. For shame!
Linda Steele
-a pittance of time Terry Kelly Video http://www.youtube.com/watch?v=2kX_3y3u5Uo
I recently learned of your so called “White Poppy” campaign. I am sure that you “wanted to start a conversation” but I am not sure the conversation that was started was the one you intended. First and foremost, I feel you do not truly grasp the purpose of the Poppy Campaign. Living as we do in Canada, with no actual war within our borders for over 100 years, we have become complacent. The actual purpose of the wearing the poppy is that the person believes in their heart of hearts that peace is the only answer: that never again should a man or woman have to fight for freedom and peace. I raised my children to vote in every election, stand tall and sing loud when our anthem plays and keep the silence on the 11th hour of the 11th day of the 11th month. that you would usurp the sacred sacrifice that the veterans and their families have made all in the name of “starting a conversation” is abhorrent and shameful. the very freedom and funding that your received in order to achieve this goal of conversation was paid for with blood, in the hope that their children, our children and children to come, would not have to die for the cause of peace. Apparently, we do need more conversation about war, because without it, the peace that you tout to have a conversation about is meaningless, since obviously it breeds contempt, self importance and ungrateful behaviour. you not only owe an apology to every person touched by war, every veteran that fought for your freedom to draw breath, every citizen who was foolish enough to fund your misguided cause–including, apparently our tax funded government–but you owe an apology to the country that surrounds you in a freedom that others can only dream about. in future, please leave the “conversation” to the people who are actually capable of having it, because truly, you seem to have lost touched with the real society in which we live, in which we behave with honor and charity and in which taking a moment to pin a RED poppy on you lapel, honors those who’s only goal was the peace and freedom of our land. For shame!
Linda Steele
Thursday, 19 September 2013
telling the story
Frequently , at work, we grow tired of saying the same things, about the same things. to the same kinds of people over and over again. Indeed, when I was younger, my impatience with this process knew no bounds. When Connor was diagnosed and well into the span of his life, having to tell his `story`` or at least elements of it, fairly wore me out. in the beginning, it was his diagnosis, the process, the testing, the words the doctors used, were repeated over and over again ad nauseum, to family, friends, co-workers and some times even strangers. With the ``professionals``: paediatricians, OT, PT, teachers and assistants, it was the history : my pregnancy, his birth, and infancy were all examined under the microscope all having to be repeated over and over again, only to be written with a slightly different slant.
Then, just as it became second nature, I began new employment, not realising that when I spoke of my children with my new co-workers, they knew nothing of the story. Now the problem was that the story had gotten much longer. With high school came a whole new population of people who needed to hear the story :school principle, teachers and assistants, as well as other professionals (one of the biggest roadblocks in Ontario healthcare is that it is not streamlined through transitions, but divided into compartments of infant, school age, teenage, adult and senior) none of which seem to know how to talk to each other. Connor being Connor managed to interject new elements and twists into the story such as giftedness, learning disability, and coming out. I suppose to make sure that the story was not too boring to hear or tell. Still, the endless explanations about our exceptional sons had become somewhat tedious at times. then a life changing Light bulb moment occurred. I was attending a conference on obstetrical care and breastfeeding instruction when the teacher asked us :Do you ever just get exhausted saying the same thing over and over again. With a collective sigh and eye roll, there was a resounding LORD YES|! |Then she said :Consider this, it might be the thousandth time you have taught it, but it is the first time they have heard it! if you are bored and tired telling the story then the listener and learner will be bored too and not receive the information you are trying to convey. if you can keep the story fresh and exciting, then the listener will also be excited about what they are hearing." There it was, the power to change and influence others positively is all in how you tell the story; absolutely life changing; so what if i had told the story of Connor's birth, childhood, and coming out over and over again. It might be tedious for me but for someone else it was the first time they were hearing it and it might just change how they look at things, how they do things or they might just be comforted by it, knowing they are not alone in their struggles. my personal affirmation for this idea came as he was doing one of his presentations to a school board conference. he was 17 and was the keynote speaker for a group of humor and wit, he told the story of his high school career and his coming out. A wonderful man came up to us after with tears in his eyes. Connor was always surrounded after one of his talks, so the man asked me "How old is he?" I answered "17", he turned to Connor and said, "I have to shake your hand, you are the bravest person I have ever met; it took me 40 years to do what you just did today (come out)" he said that the story had changed him. there were many other times when people have shared with me that knowing Connor and hearing his story has changed their lives or how they view things, but nothing struck me as much as that moment.
teachers. using
So now when I am at the park with my pack of hounds and someone asks me, "What kind of dogs are they?" I proudly relate the stories of their rescues, the histories that we know and why we adopted a rescue rather than getting a pure bread puppy. And now, rather than being fed up with repeating the story, I am excited at the chance to share it; after all, its the first time they have ever heard it and hearing that story can change a life and in turn change the world.
Then, just as it became second nature, I began new employment, not realising that when I spoke of my children with my new co-workers, they knew nothing of the story. Now the problem was that the story had gotten much longer. With high school came a whole new population of people who needed to hear the story :school principle, teachers and assistants, as well as other professionals (one of the biggest roadblocks in Ontario healthcare is that it is not streamlined through transitions, but divided into compartments of infant, school age, teenage, adult and senior) none of which seem to know how to talk to each other. Connor being Connor managed to interject new elements and twists into the story such as giftedness, learning disability, and coming out. I suppose to make sure that the story was not too boring to hear or tell. Still, the endless explanations about our exceptional sons had become somewhat tedious at times. then a life changing Light bulb moment occurred. I was attending a conference on obstetrical care and breastfeeding instruction when the teacher asked us :Do you ever just get exhausted saying the same thing over and over again. With a collective sigh and eye roll, there was a resounding LORD YES|! |Then she said :Consider this, it might be the thousandth time you have taught it, but it is the first time they have heard it! if you are bored and tired telling the story then the listener and learner will be bored too and not receive the information you are trying to convey. if you can keep the story fresh and exciting, then the listener will also be excited about what they are hearing." There it was, the power to change and influence others positively is all in how you tell the story; absolutely life changing; so what if i had told the story of Connor's birth, childhood, and coming out over and over again. It might be tedious for me but for someone else it was the first time they were hearing it and it might just change how they look at things, how they do things or they might just be comforted by it, knowing they are not alone in their struggles. my personal affirmation for this idea came as he was doing one of his presentations to a school board conference. he was 17 and was the keynote speaker for a group of humor and wit, he told the story of his high school career and his coming out. A wonderful man came up to us after with tears in his eyes. Connor was always surrounded after one of his talks, so the man asked me "How old is he?" I answered "17", he turned to Connor and said, "I have to shake your hand, you are the bravest person I have ever met; it took me 40 years to do what you just did today (come out)" he said that the story had changed him. there were many other times when people have shared with me that knowing Connor and hearing his story has changed their lives or how they view things, but nothing struck me as much as that moment.
teachers. using
So now when I am at the park with my pack of hounds and someone asks me, "What kind of dogs are they?" I proudly relate the stories of their rescues, the histories that we know and why we adopted a rescue rather than getting a pure bread puppy. And now, rather than being fed up with repeating the story, I am excited at the chance to share it; after all, its the first time they have ever heard it and hearing that story can change a life and in turn change the world.
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