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Monday, June 2, 2008

One Year and Counting....

The first anniversary of our arrival in New Brunswick happened a couple of days ago.  One year since we left Alberta.  How did one year  go by so fast?

Hubby asked me yesterday, if I missed Alberta or if I wished I was still there.  I replied that I do not think about moves and changes in those terms.  If you spend much time dwelling on past things you might start regretting things.  I try to stay focussed on where I am and what is going on NOW.  My here and now is New Brunswick, for better or worse....richer or poorer...heh heh heh!!  There are things I miss and always will, about Alberta.  What I miss most are my friends.  My cherished buddies with whom I could visit and discuss life and events, perhaps catch a movie or do some eating or shopping.

Life slowed down once we moved here and perhaps the hardest thing for me was the lack of friends.  My kids are older and one, at least, has established her own life now and is busy with it.  When they were younger it was us parents who arranged playdates and activities and so met others by these social outings.  Working also created other friendships.  As I have neither here, it was the loneliness that I didn't like.

So I recently took a job at a "home improvement store" much like Revy's or Home Depot out west.  I'm a cashier, out there on the front lines....talkin' my heart out to customers.  It was also a trial for son as the hours required him to be home alone for periods of time.  Two weeks into the experiment and it is evident of FAILURE.  For someone who NEVER used to use a telephone, he figured out how to call the store and get connected to my pretty quick.  The call is received by the switchboard then transferred to my supervisor who then notifies me of the call.  She then either transfers it to the phone at my cash or I have to close it temporarily and walk to the customer service desk and answer it there.  Either way it is a very public place I receive a private call from a distraught and panicky child.  Out of desperation I then call on my hubby's family to help and am eternally grateful they have been able to thus far. 

Then it suddenly HIT ME last week....school classes finish this coming week!  A couple of exams the following week and then school is OVER for this academic year!  Holy cow, when did that happen?  For someone who can barely handle one afternoon alone ~ to be suddenly faced with every.day.all.day..... well, I don't even want to pretend to go there.

I sent an email to my employer this evening requesting a reduction in hours to only evenings and weekends.  This was identified as a possibility in the first few days I worked, after I received a frantic phone call from home during training.  I do enjoy meeting the public and seeing a few people I recognize here and there. 

It seems strange that, after a year of living here, I can still go days without seeing any familiar faces.  It still feels foreign in that respect and like it will never change.  I'm not sure how many of you out there truly understand what that is like, to not see anyone familiar day after day, week after week.  After 10 years living in Alberta, I truly enjoyed stopping to chat with people I knew in the grocery store, or while shopping at Walmart.  I still feel like a stranger here and not embedded in the community at all.

So join something, someone suggests.  This brings me back to our situation.  Nothing is easy or normal when there is a disabled person in the home; a child in particular.  Everything we do is scheduled around him and his needs still.  After 15 years of it with still no end in sight.  It didn't get better; it just changed.  It is one of the hardest parts of raising a child who struggles with developmental issues.  The nature of Asperger's Syndrome, for instance, makes it difficult if not impossible, to make or keep friends.  Even though they often crave companionship.  This means Mom and Dad become that companion by proxy.  These kids crave structure and activities to keep busy.  Well hubby's job is  unpredictable and so are my hours.  We now live in a small community and it does not offer any of the specialized activities that were available in Edmonton.  That has been rough on him.  Guess who provides the activities and entertainment now?  Yup, us, his parents.  Son always wants to know what he is doing at least a day in advance and look out if nothing "fun" is planned.  He loses his cool and his temper.  Basically that happens at least once a day.  He isn't good at knowing what this "fun" is and it does usually entail spending money.  Every family knows the need to budget by reducing outings and money-costing activities. 

Are you getting a picture of what happens every day now?  I usually try to plan some errands and drop-ins to places son likes to see or visit, in order to get him out of the house on a daily basis.  It is very tiring and some days I do deeply resent it.  A day of relaxation?  Doesn't happen often.  Today for instance, was my "day off".  Well, hubby has been entertaining son while I'm working so I wanted to give him a break.  I was exhausted from work but rest was out of the question.  Son demanded my time and that meant keeping busy.  So I didn't get necessary chores done, am still exhausted and sore, and spend a great deal of the day with son.  Entertaining him.  Please don't tell me he'll be grown up soon and I'll miss these days....

He IS grown up.  He's 15-1/2!  This is the age where teens start demanding that independence and alone time.  Where they hang out with their friends, their books, their room; whatever.  I'm saying that isn't happening here and is unlikely to soon.  Again I've had to adjust my life, my work around him.  It's hard.  It is a whole lot harder than you can even imagine.  It is hard not to resent the fact that I still have to worry about him and be his company for so much.  That what I do and how I live my life is connected in such detail, every day, to his needs and happiness.  You cannot imagine what effect this has on you, year after year.  I've had so many calls from him over the years.  Had to leave work so many times.  Had to adjust my work, the hours....everything.  A year ago I had a break-down from the unrelenting stress of this kind of life.  It had led to severe problems with my employer and work environment and after 9 years of it, I was frazzled and basically snapped.

I had a year off work and can feel that I've recovered somewhat.  I am not the person I was though and will never be again.  Something broke during those last couple of years from the extreme stress; although my health has recovered somewhat who knows the permanent damage from those kinds of emotions day in and day out?  I took a small step back out into the workforce 2 weeks ago and got another heavy  and immediate dose of reality about our life again.  I should say his life and mine.  Although my hubby endures the fallout of this, his work life has never been affected like mine.  I suspect that for families with disabled children, it is the mother whose life suffers the most.  It's not about a contest to see who is the winner; I'm talking about the direct impact on your life directly.  It was MY worklife that was affected; I'm the one who had to arrange and re-arrange my work around my son.  When my employer and I were kind of forced into a mutually acceptable working arrangement, I had to listen to the words and barely concealed anger of coworkers who thought I had received special treatment and an easier life.  They imagined, when I was teleworking, that I'd mosey on down to my office in my pajamas whenever I got around to waking up, coffee in hand....and plunk down to an hour or two of work a day.  The reality was starkly different but they didn't care to see or hear that though.  If someone's spouse had cancer or was seriously ill, coworkers were sympathetic and the employee had plenty of time off to tend to the needs of their spouse, child, etc.  It is the nature of life.  It always seemed like I had asked for a disabled child and that I enjoyed the challenges and struggles that it brought on.

I can guarantee you that isn't the case.  I worry endlessly about how he will survive when his father and I are gone.  In particular when something happens to me.  He is obsessively attached to me; don't ask me why.  I don't have any answers and he certainly didn't come with any guidelines!

Anyway it is very late and I have to work again tomorrow morning.  I still have to get the dogs out for their last bathroom excursion before hitting the sack.  I hope that life balances out more after this coming week; when either my hours are cut in half....or I quit.  One way or another, school is out soon and for this summer at least, the kids still need me at home....

I may not post much for a week or so; so much adjusting to do right now and so little time for it all to happen!

3 comments:

Terri said...

Hello, sweet lady P! Just thought I would pop over for a second and here is this long and lovely and sad and beautiful post of yours.

I hope you know that you don't have to explain yourself to anyone. It is obvious that your plate is FULL with your son and his demands, and anyone who would question you just doesn't get it.

My Mom worked full time and dealt with my disabled Dad for 15 years, and I can tell you, he was an asshole a lot of the time. She was chronically exhausted, worn out, on the verge of collapse, and never ever was able to put herself first. It is nice for the Oprahs of the world who say to "put yourself first" and all that crap, but it just isn't possible for many people, people who have someone so dependent on them 24/7, and so demanding, even if they may not mean to be. I feel your pain. I cannot imagine the stress you must be under, and I hate the unfairness of it all. You are right when you say it is the mother who is most affected, and it isn't fair. But you are in good company - women carry this world on their shoulders and get no thanks, no respect. I see what you face, just from your words. And I know there are likely days that you feel strong and others that you probably just want to run away. I don't think you are weak or whining for writing these things - it is so real and the way I wish more people would write. About real stuff!

I'm sorry that your job isn't working out. It isn't fair. You deserve to have that job and just be able to concentrate on it when you are there. But outsiders will never get it. I work with chronic headaches and I hate that I am always at an unfair advantage to my colleagues. I hate it that I complain, and that I have to make excuses, and that I have to miss time. It makes me feel like LESS and that people thing I am taking advantage. I hate that, because I am the hardest worker you will find, and the furthest from lazy. But I have to face that only a few clued-in, compassionate folks will "get it" and the rest will think I am a lazy wanker. At least YOU know who you are.And you are living a life of such integrity.

I hope that you can make some friends (I know the feeling - I have NONE either!) and try to look after your health.

Hang in there. You are not alone, although it might feel like it sometimes. You are loved and appreciated!

A big hug from me,

xoxo Terri

Terri said...

Hey dear girl, me again! I really should email you, shouldn't I?

Yes, we have Mike Holmes book and I adore him. :)

I agree with you that toxic people need to be removed from our lives and it is hard with family, isn't it? It is complicated because we feel attachment, and even love amidst the hate. But you have to withdraw yourself from people who cause you constant pain and threaten your family's spiritual health. I, for one, can't deal with stressful people, not after the childhood I had. If there is too much drama and disfunction with people, I make myself scarce!!

I don't think I actually forgave my Dad. I am still furiously angry with him. I think what I was able to do is realize that he is a different person now, and that he is unwell and is not accountable any more. I have let him be his "new self" and will take that at face value. I cannot keep harboring this anger for a man who doesn't even realize he did anything wrong. It is complex. I am very angry still, and nothing is "forgiven". I have just let it go, which is somehow different. I will still tell the same story of my life, but somehow the story got changed in the end and will influence how I tell it to myself. It is complicated!

Hope you are well and in a peaceful place today! xo Terri

Susan said...

Hey sis - long time no hear - it's been hard to get on. It took most of May to get my strength back because of the anemia. I basically went to work, came home, made supper, and collapsed. It's better now, but I look at all the green trees and wonder how it happened so quickly!!!

Toby has not managed to make any friends of his own. Because he works casual jobs (as you know with the government) he doesn't have that stability and while he's met colleagues he likes, he hasn't met anyone he really has connected with. He is very good with my friends, but they're not his. He never had a wide circle anyway, and I think we are discovering that it's hard to make friends at our age because families and friends are all set. I have my friends from before, and friends at work, but no one knew (though I know lots of women because of the kids now). I hope in the next year or two you will meet one or two special people that you can go to movies with, eat out with. It sounds like you need to have some time away for yourself every once in a while. I call them mental health breaks - and you just had a year of one, which I think you really needed. I wish you could take more time off, because having Mathew doesn't make it easy to return to work. He doesn't like changes to his schedule, and not having you near makes him panic, is what it sounds like. and what he will do later on - I hope he is able to live in a community home where he can have work and a group around him, is what I dream for him. And not when you are gone, either!! You and John have been as good as you can be with Mathew, and too bad for your co-workers who don't understand what he needs- though I know it's so hard on you, and that's hardly fair. It sounds like you enjoy your job, and the part-time hours are working, so fingers crossed for everyone. you get to meet people - adult people! conversation not about 'how to have fun today with son'!!! - but adult stuff.....at least your kids don't need a babysitter, Toby and I get out together like twice a year!! Somedays I think, is the bus ride home the only time I get to myself? I guess the key is, to like our lives as they are. And despite winter storms, and summer ones now, it sounds like New Brunswick has been good for all of you. Kirsten certainly is blossoming, and John has a job, and you have a house you like on a lake!!! *with eagles* !!!

love Susan
PS Holly-Anne graduates from kindergarden on Wednesday!!! *sniff* she's growing up too!