https://carleton.ca/bhum/2018/studying-in-italy-2018/

Venice old girl style

I HATE CHRISTMAS: and here is why!

Anyone who has spent any time with me in December has heard me scream or at least comment that I hate Christmas. Many people have tried to change my feelings about it, songs, cajoling cookies, the works. And then the magical million dollar question: Why do you hate Christmas Linda?????
so here is why!

1. I am an orphan-- Now obviously, I am have not always been an orphan so this cannot be the real reason, but there it is--I am orphaned and I have been for more than a decade.  When my parents were alive, our relationships were strained at best, horrid at the worst--especially with my mother. It doesnt change the hollow feeling that you get when you hear stories about peoples celebrations that span 3 and 4 generations.  I have no extended family nearby and the ones that I have are few and far between. My sister is in British Columbia, cousins scattered from Newfoundland, New York and Montreal, which makes for great roadtrips during the year but not so great during the holidays. I have two "children" which are grown men with lives of their own, who also are not big on the holidays, making the spirit that much harder to attain, and as of yet, we have no grandchildren so it is always a very "adult" (translation boring) day. but mostly, the holidays just amplifies the holes in my heart, after all there must have been some good memories. right?
2. I have no good memories of Christmas to draw on.--My father frequently called me "the grinch" but as a child, he never bothered to maybe try to find out why, when everyone was supposed to be happy, I was not. I would have been happy to share my reasons, even as a child: Christmas for us (when I was young) did not look like the ones that you see on T.V. from the sixities.. I was never sure what my parent thought it was supposed to be, but I was pretty sure it was not supposed to be like ours! Putting up the tree was a trial. there was no trapsing into the woods. My mother would get it at a lot close by--always a scotch pine and never that big because our house was very small (think 800 sq feet) my parents (if my father was there) would fight over the lights. we might be able to put some decorations on, but my mother would move them to have the "perfect looking tree". there were no handmade ones that we did in school, mom didnt keep them. or ones that were "artsy" or crafty. (mom didnt do those either) I think there was probably alcohol involved. Christmas eve, the neighbors or us had an open house. if you have watched Mad Men, you know what this is. It is a bunch of adults getting together and drinking and smoking. Thus, Christmas day, meant hungover parents. We had to get up early, because my grandparents lived 3 streets away and we HAD to be there  to visit them over there by breakfast. thus after we opened our gifts, which my mother always remarked that she thought she should have bought more, we went to my grandparents. had breakfast, opened gifts, were expected to behave perfectly, and then came home. My parents being exhausted and still hungover would nap. then we had to get dressed up, and go back over to the grandparents for dinner. at this point every one was exhausted. One more thing, my father was a salesman so the only time that he could ever be off work, was the break between christmas and new years. He also had horrific knees and had 12 surgeries in his life--10 of which were at Christmas. therefore, christmas was also my father on crutches and in pain.....
3. My birthday is New Years eve. Yes I suppose this should be a good thing but anyone with a christmasish birthday will tell you it sucks, and if it is after christmas, it sucks more. and if it is the worlds biggest party, you can count on it being forgotten by everyone including your parents. Apparently, one New Years eve, I said to my mother "why did you bother having children if you were always going to leave them?" She to the day she died, thought that this was a "funny" thing that I said, instead of seeing that perhaps they should be foùregoing their endless party cycle over the holidays. 
4. Both my husband, and my parents got divorced. Many people seem to be able to work this out better than we did. Since our children were the first in the families, there seemed to be a strange competition about the time and place we could see people. My father went from someone  who would have preferred for the entire last week in december being torn off the calendar to a person trying to rival St. Nick. My mother, a highly competative woman, always had to be the most important, therefore, her saying was that "she only asked for one day" ( she didnt, she asked for most days) but as I pointed out, it was not like she was asking for April 9th, she wanted DECEMBER 25! I thought that I would be safe with my in-laws, since one year while we were dating, they even went away for Christmas--seemed reasonable--it was not! Thus, Christmas involved seeing 4 families (oh did I not mention that not everyone got along, nor wanted to share their grandchildren moments with anyone else) so, 4 sets of parents, complete with all the siblings, within the period of December 24-26th...no if ands or buts. no change, no compromise. and that pesky thing that I  do--nursing, which means working holidays and shift---oh well! so I would be either working or exhausted trucking 2 kids, one in a wheelchair, (oops we will get to that on the next one) over 100's of Kilometers back and forth, to non-wheelchair accessible houses, in the time span of 48 hours to make sure that everyone else got their christmas. One year, our kids, who were getting sick, fell asleep in the car between my fathers and my father-in laws (a drive that is usually 15 minutes) and we drove around for 2 hours to let them sleep until we almost ran out of gas. some of the madness ended when my father passed and my sister got her own house (a bungalow, bless her heart) however, to this day their is very little movement on the "it has to be on christmas stuff days"
5. We have a child in a wheelchair--if you have been kind enough to read my other posts, you will know this already and the story of my "step" mother- in-law telling me that this is not a big deal. ITS A BIG FUCKING DEAL! Connor is a large man now, but he was always a large child, he uses an electric chair that his overly large and weighs between 200 and 300lbs. we did not have a wheelchair van because we could not afford one, so Max lifted him in and out into the seat. None of the houses, (before my sister bought a bungalow) were accessible, although some more than others. yet, it was necessary to have us there, even if there was snow on the holiday. This was fairly universal, although for awhile my mother came to my house (that was worse). Despite how bright and wonderful he is, we were ignored. we would go hours without people saying  a word to us, while talking all around us.  This is not an exaggeration; one year in my Mother in laws very small house, Connor yelled at the top of his lungs "ROUGH PIRATE SEX" and no one even looked over at us. Connor requires assistance with eating, which makes my meal difficult. he has to use a straw, which means we would have to remember that. He uses a urinal, but there was no where we could comfortable take him for a pee. (One house was better but that relative never wanted to host) so, "family" Christmas involved going to an inaccessible house, that there was no where for our son to pee, so that we could be ignored for hours, just to soothe the idea that we are actually a family amongst the other family members.
6.  Oh and theres that nursing thing again. I cannot get EVERY december 25th off. Oh and there is that birthday thing again....I want to be off my birthday so I have to work christmas to do that...hard to do when everyone wants you off. It is not like it was not known that I was a nurse, I graduated when I was 20. My husband and I have been together since we were 18. But no one, not even my own parents were willing to change anything based on my working schedule. nothing makes you feel more invisible and unwanted then someone planning a "family event" and making it very clear that it does not matter if you are there or not. 
7. Christmas is a Christian holiday--its right there in the name. Now I know that I am all Charlie Brown Christmas here, but I know that it is not about the ridiculous consumerism that has taken hold of our christmas'. I cannot stand to hear all the advertisements for things like Pick up trucks as christmas presents. Back to the points above. I always thought that I would get to go to church on Christmas eve,. seemed reasonable. After all, it is "what Christmas is all about" however, going to church for services and carols does not always mesh so well with uber capitalist relatives that want you there for presents.(oh I expected my family to go with me too, and that went across as outrageous) I had one relative comment that she "did not feel the need to respect my beliefs about Christianity and Christmas if it was going to interfere with her christmas." SO, I do not think that Christmas should be all the shit it has become. I think that it is a time to reflect on what you want the world to be and to draw the people you really love together in a simple manner. 
8. Christmas is NOT a Christian holiday--yep, I know what I just said, but its the truth. Christmas is an invention to make Christianity more palatable to Romans. it is the combination of Christianity, Paganism (Winter Solstice) and Roman--feast of Saturn. If you are (un)fortunate enough to have a Religious scholar in the family that NEVER forgets anything he has read, you find out these things and have any illusions of the holiday destroyed for you. if you have any illusions left, your own education will do it for you. and if any of those hopes are really left the capitalism that has taken over the holiday will really knock it out of you!
9. I am a socialist/libertarian/environmental warrior--Christmas is too wasteful! people are subjected to undaunting and unending capitalist propaganda about what Christmas should be. they overspend money that they do not have, buy for conveinence not appropriate and use up more plastic and waste than they need to. There is a myth in the belief that the artificial tree is more ?environmentally friendly?? than a real tree. then a greater amount of plastic is used. the fake tree will never decompose, whereas the real tree is a farm crop that feeds the environment with oxygen while it grows and decomposes on its own and feeds the  farmers and their families with the earnings from the crop. the wrapping paper, especially the foil is not friendly, the sparkles are microplastics that end up in the ocean and pollute our oceans. beer has plastic rings, the pop is in plastic bottles. the food is wrapped in plastic and we go on and on. we eat too much while people starve and give little thought as to where it all comes from or where it goes. I know that all this makes me sound like a downer but then again all that I say is true. by following the "crowd" we are killing our world. and despite efforts to the contrary, my voice is always drowned out. while I have tried over the years to intergrate different types of presents or traditions they are disparaged and ridiculed. 
10. Christmas is for the rich.--this sort of goes back to the previous point but also in a global scale and on a personal one. Max an I made choices as our children were young to be more available to them and not take jobs or promotions that would involve being away from home too much. we both kept to all of our ethics and convictions, never forgetting who we really were and as a result never doing anything that would "cheat the system". As a result, we also did not make any great wads of cash, any time in our marriage. we learned early on that we could not go big at christmas. I must say that our kids were great about it. However, christmas can routinely add about $1000 (at least) to a family budget in a month. when you are living paycheck to paycheck, it is difficult to find another $1000. although I drew upon the experiences I had growing up with my amazing aunt who did arts and crafts and made many gifts, I didnt have the same success at it as she did--capitalism rears its ugly head.....people (my own mother was particularly bad with this concept) wanted exactly what they want not what you want to give them. but more importantly than our financial concerns.
11.  So grinch it might be, but i will continue to hate the farce that christmas has become and hold out for thanksgiving
12. https://youtu.be/Ys8CMWtXiNg

always and never

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.

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.

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.

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.

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.

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.

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

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.

Follow your Bliss--Thanks Mary Lou!

As Connor approaches the end of his masters degree, the question looms, "What Next?" From a realistic, pragmatic position, he should continue his studies in the Ottawa area, either at Carleton, University of Ottawa, or St Paul's University, depending on the field of his choice for his PhD studies. The problem with practicality and realistic thinking is that is rarely the stuff that dreams are made of. In a perfect world, that was universally accessible with equity and accessibility for all, Connor's grade point average and educational background would guarantee him acceptance in any ivy league university of his choice. Indeed, from the time he was 7 years old he said he was going to Harvard Law school when he graduated from university.
Then, reality rears its ugly head. Harvard is 8 hours away by car, in the Boston Massasschutes, costs 45,000 per year just for tuition, and does not include 24 hour attendant care. In addition to requiring physical care for his daily routine, the educational and research rigors of a PhD program will excited an almost full time research assistant. Don't get me wrong, I have always know that this was the next step, but somehow it crept up on me without a sound.
So the problem with dreams is that reality usually bites them in the ass.
Connor could get into Harvard (or any other school he chose) we could move to Boston and work on his Phd but realistically (theres that bite!) would that be the best use of our resources. He (and virtually everyone around us) is told over and over again not to give up on your dreams. but, dreams by definition, are  fleeting, ghostly things that do not exist in the realm of reality. In addition, those who advise Connor not to give up on his dreams do not live in his reality; nor do they have a concept of how much work: both physical and emotional goes into his daily grind, let alone adding the stress of moving to another country with who knows what services in place.
When I asked Connor what his dream was he answered, "to be employed." I consider that a goal and a given truth at that. After further contemplation, he added that it was to teach at the College of Humanities at Carleton. Now, we are getting somewhere|!
Still there was a certain amount of whimsy when he added, after digging deeper, "To study at the American School in Athens." Now thats a dream! Forget about another country, this kid wants a whole other continent. Harvard would be a cake walk compared to Athens. At least the USA speaks English!
So back to reality with its achievable, measurable goals with dreams tucked away for another day.
He will more than likely study at U of T, Ottawa U, Queens, or Western, where I can divide my time between him, Max, Jarrett, my dogs and my job.
Yet, that pesky little dream idea weighs heavily on my mind and as is the usual case in my life the universe opened up and taught me a lesson about dreams and their evolution. this weekend we attended a CD launch of a dear friend of ours, Mary Lou Minor. Now, everybody and their dogs has a CD these days but most of the time it has been burned on someones laptop and recorded in the basement. but Mary Lou is going to be selling hers on itunes and in HMV stores! this was the real Mcoy! the catch is that  Mary Lou is my age. Once she told me that she had written songs early in her youth with but the traditional life of mother, wife and work it fell by the wayside. A few years ago she started up again; this band was the second incarnation. So here, 5 years later, with the love and support of her husband Rob and her family and friends, there she was on stage bringing her dream to fruition. As I watched her playing her large guitar, dancing and singing out her original songs, sung with her sultry voice, I realised that dreams do not die, they just hibernate for awhile, long enough for the season and the world to be in the right place.
So maybe Connor wont go to Harvard or the American School or Oxford for his Phd. Indeed, at this point it would be a miracle if he did. but that doesn't mean that he never will: Harvard is not going anywhere and neither are his dreams.

All I know is that Connor is going places and there is absolutely no way of stopping him or even slowing him down and I have no doubt no matter how unrealistic his dreams are, he will bring them all to fruition. He has never given up and I doubt he ever will.

the sounds of anguish

When I tell people that my profession is a birthing room nurse, the response is always something like "Oh you get to work in the happy place!" for the most part, this is true. I am honoured to be part of the most joyous days of parents lives; life changing, life memorable days. However, being the Capricorn personality that I am, I work in the area where there is no grey: I am part of the very best and the very worst parts of peoples lives. Yes, when everything goes well, it is the very best. But then, there is the very dark, very bleak part of my job: helping a woman bring into the world a baby that will never take its first breath. It doesn't happen very often, but when it does, it sheds a pall on the entire unit; none of us go untouched, no matter who is the actual nurse caring for the family.

I have attended over 10,000 births in my long career. As you can imagine, I have difficulty remembering a handful of them. But, I can describe in detail every stillbirth I ever delivered. At my first one, I learned why they are deemed a "stillbirth." after all, there are many more medical, more appropriate names. But like so many parts of working in childbirth, the history of the art comes into play. A birth is joyous, loud, noisy, filled with laughter, tears, and baby cries. We shout out: its a boy or its a girl. Mothers and fathers are weeping tears of joy with laughter, and I love yous. The physicians are busy telling us to do the things we have done a thousand times, but still, need to be said out loud. We are chatting about our own lives and our own family experiences and welcoming this wrinkled, red, new citizen into our world.

A stillbirth is just that: still. No one says a word, we move slowly, not quickly and silently, moving with a slow rhythm, as if trying not to alert the mother that her child is here and will not ever really be here. No orders are said because they are not needed; no chatter, no laughter, just the silent weeping of a heartbroken father, the stream of tears from our sympathetic hearts and the clicking of the hospital clock.

The one sound that breaks the stillness is spine chilling. It is the bitter wailing of a mother, that will never mother this child and a woman, who until the very moment that the baby was born without life, was so sure we were wrong and that this life she had nurtured inside her was still there. When the baby slips from her limp, and still, she knows the horrible truth. This baby will never go home, never grow live. The medical people were right all along: this baby is gone.

That wail, that cry that the mother gives is primal, something from long ago, lost from our civilized consciousness, yet still hidden deep within our soul. It is truly the sound of the heartbreaking.

We overuse that expression in our modern world "heartbroken," but until you have heard a woman's heart shattering into pieces over the loss of her baby, it is meaningless. All of the pretenses and crocodile tears of our modern society fall away amid that sound.

When I was young and starting my career, I was so naive. I did not understand why we would spend so much time and effort with parents who had lost a child rather that being with the ones whose child was being born. There is a long protocol to follow, with things that some people would consider morbid, trying to get some kind of memento for the parents, such as a lock of hair or foot and handprints.

It is amazing to me now that I could have ever, ever been so stupid. But I was young and extremely pragmatic, and most of all, I had not raised Connor.

Then in one of those light bulb moments that Oprah talks about, I learned something that would forever change my thinking. A perinatal bereavement instructor shared with us this thought : When you have a child, you have a lifetime of memories to look forward to, growing, first steps, first day of school, etc. when there is a stillbirth, those moments, those hours are the only memories that those parents will ever have of that child. It is not their fault that their child never took a breath and will never grow. That baby will always be their child, and as Nurses, it is our job to make sure they have as many memories as possible to take with them.

That small thought changed everything and how I now approach my care, trying to give the parents as much as we can to take with them.

The parents often want to know why? Why them? Why this baby? Only very infrequently can we tell why a baby that survived so much just to come into existence would perish so close to its birthday? If we can tell that it was something like a cord around them or a bleed, it rarely makes a difference.  No matter what the reason, their baby is still gone. Grandparents are notorious for wanting to know why. Sometimes, I believe that it is so they will have someone to blame, sometimes I think that it is just something they say because they do not know what else to say.

I have heard the heartbroken wail another time in my life. It was when the doctor told us that Connor would never walk or stand on his own. Max was devastated, and his cry was heart-wrenching. I think most people assumed it was because he was disappointed for himself; after all, he comes from a family where success is based on your physical ability. It wasn't that. He was mourning the loss of the son we thought we had while trying to process the son we now had; and Max being Max, was feeling "bad" for all the things that Connor would be missing out on, never imagining what this new road would bring us too. And as with the stillbirth family, everyone wanted to know why? What caused this? Why Connor.

Elsie (my mother) was particularly relentless in her pursuit in trying to find an answer to the why? Part of me thinks it because she wanted to blame me--after all, I was the last one who was there!--part of me thinks she was planning on using my physician, something Max and I dismissed very early on.

I can tell you that knowing why never solves the problem and sometimes introduces a whole other set of problems into your life. The peace that I finally got on the why me question came from a colleague who had a child with a severe genetic disorder; she passed away at age three. I finally got up the nerve one night shift to ask her a question that had been burning in my mind, "Rita, did you ever ask, Why me God" her answer was simple and blissful, "No, Linda, I didn't, I just figured, Why not me? What makes me so special?" there it was--Why not us? We were loving, caring, and Connor was our son. Looking back, we were the perfect choice of whatever power decides these things-- fate, Karma, God, the universe--after all, we had been together for many years, I was a nurse with pediatric background and training and Max was a weightlifter with a soft heart. Why not us? And truly would know why Connor was the way he was, why he had cerebral palsy changed anything? There is no cure; there are all the same treatments regardless of why the cerebral palsy occurred, and sitting around knowing could lead to bitterness and stagnation. The last thing Connor needed to succeed in the world was a set of bitter and stagnant parents. And as light bulb moments happen, I know now that it was meant to be. Things do happen for a reason; they are not always happy reasons but for reasons nonetheless. If we hadn't been Connors parents, who know what life we would have had. If we hadn't raised him there would be wonderful people missing from our lives; I am not even sure we would still be together as it would have been easy to quit our marriage if not for the shared care of our wonderful sons. And I am very happy that it turned out this way. As I told my sister in law this week, I would not change a thing, and I would not have missed it for the world.

I know that in the moments of grief and heart-wrenching pain, it is so hard to think past it, but things do happen for a reason, and there are no mistakes. For the mothers who lost babies, they will never take a single breath their next child takes for granted, they will never push away from a hug, or not stop what they are doing to listen to their toddler babble or their teenager rant. Sometimes, that reason has to be enough.

The secret Language of marriage

This October, Max and I will have been married 30years. we have been together 36 having dated 4years and being engaged 2 before we finally got hitched! there are several distinct traits of being together over 3 decades, as any long term couple will tell you. I think that one of the most interesting in our lives together is our common language. I don't mean that we both are English speaking in public and then speak french when alone.  the language that I am talking about can best bee described as I speak fluent max and he speaks fluent Linda. It is for this reason that we are not allowed to be on the same trivial pursuit team because we will invariably "smoke" the competition. (it is also because we seem to know a ridiculous amount of trivial information; but that is for another blog) this language phenomenon was brilliantly portrayed in the movie Four Christmases. The yuppie childless couple brought the game "Taboo" to the family Christmas to break up the tension of the divorced families. They were quite confident that they could communicate with each other much more effectively than the husbands "redneck" brother and sister in law. this dynamic was particularly familiar to me. each year we lived through 4 christmas', and I suppose since we all wore jean overalls one year, we could be considered the rednecks. I have even had a relative who was now divorced that she would not want a marriage like ours--even though we have happily been together over 30 years, have 2 children who have completed higher education, never had a pregnancy arrest or drug scare-- because it seemed that we did not talk pleasantly enough to each other. but I digress.
In the movie the yuppie couple of Reece Witherspoon and Vince Vaugan perform abysmally in the game, barely getting a point. The brother and sister in law rocked it! One word or a weird analogy would get the answer in seconds flat. they absolutely decimated the competition. Poor Vince looked like someone had killed his puppy. But I could have warned him; they had their own language: words, stories and phrases brought about from common struggles, triumphs and experiences. It is so powerful that sometimes you don't even have to talk; frequently, you don't have to finish a sentence and sometimes you are even thinking the same thing at the same time.
I think, in our case, sharing the experience of raising a child as special as Connor, amplifies this understanding of each other. there are times when dealing with the intricacies of our lives that there was, quite simply, no time for words. There were other times when, if we had spoken out loud, at the least we would have been questioned and at the greatest we would have been mocked or judged.
Still all in all I count it as one of my blessings of being together so long. Now I can translate for others that when Max says "chubby British singer" he means Phil Collins, or when I say the froggy song from Bugs, he can explain that I mean "Hello, My Baby" or that best of all we can both giggle the cares away simply by saying "Its no big deal".  to others, we may sound like characters from the movie or a star trek episode but to each other, it is our language of love, patience,  understanding and knowing that has taken 36 years to perfect. Just a word of warning though, don't ever play Taboo with us either! unless you want to be smoked as well.

Fibromylagia--the hits just keep on coming!!!

For almost 3 months, until now, I have not been myself. sore all over, every fibre hurting, tired, grumpy and unhappy; essentially, unbearable to be around, even more than usual!
after trying all health and natural remedies that I could, I sought out medical treatment. Within 5  minutes, my MD diagnosed me with fibromylagia--an over diagnosed, much maligned and misunderstood disorder. Since I was content that  I wasn't severely depressed or worse having a mental breakdown, or turning into my mother. I was elated to accept any and all diagnosis' and treatments. after all, I had nothing to lose and everything to gain. My family's reaction was as expected: Max was relieved that it wasn't his fault and there was a treatment (although, per usual, his anti-depressant scepticism kicked in) and Jarrett and Connor had identical responses, "there is no such thing as Fibromylagia; it is a made up disease." I was not surprise by their statements, as I had said as much verbalised the very thoughts years before!
So to the sceptics, I refute: live and learn and don't knock it unless you have been there. If it is a "fake" disorder, then whatever was eating my body and soul up from the inside out, is healed  by the same treatments. Within days, I was feeling better and now 5 weeks later, I am back to my normal, which as anyone who truly knows me is a pale imitation of anyone else's "normal"! But I am virtually pain free or as out of shape 53year old woman with osteoarthritis and various other ailments can be.
many people claim to have a high pain tolerance; indeed, it  is a source of frequent, ironic amusement in my workplace when a woman who has never had a menstrual cramp thinks she can handle natural labour because she has a "high pain tolerance" only to cave at 2cm dilation because she cannot believe how much it hurts.
But pain has been a large part of my life for most of my time on this earth: both emotional and physical. Several joint dislocations, fractures, ligament tears, major surgeries, deaths and divorces did not hold me back or rob me of my will to do the things I truly love; this did. This insidious, creeping physical and emotional pain stole all my desire for anything i derived pleasure from: music, camping, writing, even time with family and friends all fell by the wayside as I struggled to find a way to dissolve the constant driving ache that had become my body. (although Candy Crush saga and I have become best buds!)
But now, I am grateful rather than sore. I am grateful that I did not still have any narcotic prescriptions at hand because I am certain that I would be an addict by now. I am grateful that my physician has vast experience in diagnosing and treating chronic pain disorders, so instead of immediately defaulting to a mood changing, mind numbing opiate, he prescribed the proper chemical balance that my body was lacking and apparently craving for.  I am grateful for my delightful sons who always keep me real--even if they think its imaginary illness--are willing to support any journey I choose to partake in. I am grateful for my long suffering and ever forbearing best friend and husband, who even when I am at my very worst, tells me "You are doing great; way better than any one else in your situation." and says it with such conviction that I actually believe him. But most of all, I am grateful to finally feel myself again; and though many have probably never even noticed she was gone these last few months, watch out world because the bitch is back! ;)
http://www.arthritis.ca/page.aspx?pid=928