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.