It's Still a BIG deal

I have noticed that when you have any chronic situation or condition a schism in perception occurs. to the person experience the crisis, whether it be a death, chronic pain or health struggles or a disability, the problems are omnipresent and never ending. Those looking from the outside in are initially very supportive, empathetic and understanding; however, they soon lose patience with the ongoing litany of complaints, distress and fatigue of the person who is still enmeshed in the crisis.
those of us who have struggled with anything chronic will tell you that for us, it is always there, always on our minds and eating at our bodies and never gives us a break. yet, for others looking from the outside in, there is a perception of "out of sight; out of mind." Many friendships have been ended with this dichotomy and many family units strained. People become tired of hearing how much it hurts, how tired you are, how difficult your life has become and the pervasive trend in feeling is that you should "just get over it!"

While I have experienced both sides of the coin, the greatest eye opener of this phenomenon came when Connor was still quite young.
As you can imagine, and as I have frequently described, raising a child with a disability is consuming. it literally eats up all of your life: your energy, your strength and your time. you must be ever vigilant to protect yourself, you other children, your spouse and your family from the ravages that it reeks upon the family unit and the parents life. You learn early in your child's life who is real, who will support you and who will make life worse. Most of the time, we would pick and choose which events were worth attending and make the powerful effort and sacrifice that it took to partake in them. Few people realised how much military precision planning would go into a simple outing with Connor. when he was small, the issues were small; but as he grew, so did the difficulties in attending functions, family vacations and other events.
As I have also mentioned, I believe that open honest communication is a great lie and only ever works on the people who have taken and embraced the course. My experience with the "get over mentality" is a good example of why I began to think that.
When the challenges of attending family events became too great for me, mentally, physically and psychologically, I frequently tried to express it to friends and family. Some were great; others were absolutely appalling. I believe that this is something that I am not alone in either. I have had many friends and family with  various ailments and all have been met with the same push back resistance. it is as if you are allowed a specific time frame for struggling and mourning any problem that you have and then move back into step with the rest of the human race. the difficulty with this logic is thus: the problem, whatever it is, still exists and has not moved on from the persons life and there are some things that never will; CP is one of them.
One particular incident stands out in my recollection of Connors upbringing. In fact, it became the catch phrase of our family life whenever things had gotten so difficult that one of us felt close to breaking down and throwing in the towel, the sheer ludicrously of this event would bring a smile to us and giggle our way through.
It was, of course, a Christmas dinner with one of our families. Christmas at its best is stressful. 4 Christmas'  because both of your parents are divorced and not one will get their acts together enough to share is depressing. 4 Christmas' in 60 hours in a city 45minutes to one hour away, while working shift work is exhausting. Participating in all 4 of those Christmas' with a child in an electric wheelchair is nearly impossible, especially when one of the events involves an outdoor hockey tournament on a pond. Apparently, no one was aware that there were no ice skates invented for wheelchairs yet. (would not have mattered if there were since Connor cannot hold a stick either).
Feeling quite at the end of my rope that year, I tried to explain to Max's then pseudo-Stepmother, that given the conditions we were living with, it would be, quite simply too difficult to come to their house for a Christmas and I wanted to pass that year. I tried to explain, that now that my nieces and nephews were all walking and talking, doing all the "normal" things that kids do, to be around them with Connor and have the glaring differences poignantly pointed out was more than I could cope with at present.
the next 3 minutes were the most eye-opening, painful, comical and somewhat farcical of my life. Her answer to this open, honest, outpouring of my heart? "Linda, Connor is a beautiful child and all you ever talk about is that he has CP and that he is in a wheelchair. It is all that you ever say and it is really no big deal! you need to just get over it."
NO BIG DEAL!!!! JUST GET OVER IT!!!!! it is at moments like that you realise someone either gets it or they don't and all the oxygen you have ever spent talking with them has been completely wasted.
I politely said that I had to go and for the record I went to that Christmas with a smile plastered on my face and got through it. Also from that day, if ever we found life was getting to us, we would simply say "its no big deal" and giggle.  After all, if raising a child with a disability, another child, working full time nights and volunteering for other projects is not a big deal, I defy someone to find me something that was.
Perhaps, raising Connor was the only thing that I was talking about, but it was also the single most consuming aspect of our lives. EVERYTHING we did, depended on raising him so that he could be successful. we had seen the alternatives and they were not options. So we ate when he needed to eat, we slept when he slept, we arranged our outings around his bodily functions, our diet around his needs and our home was decorated in early orthopaedic. was it difficult, sure. was it tiring, you bet! was it worth it? absolutely, I would never change a minute of it. but more than anything, it was a BIG F__NING deal!!!! and it NEVER ever went away. it was never out of sight, so it was never out of mind.
It is easy to become tired with people same old complaints about their same old stories and problems. however, if you want to be a true friend, try to remember that for them, it is not an old problem; it is an ever present monkey on their backs that is new and refreshed every day with its own problems and challenges. for some, like us, it makes you a stronger, better, kinder and happier person. for others, it wears you out so much and so low that it puts you into a pit that you may never be able to crawl out of. Whatever the outcome, try to understand, that no matter times you have heard it or talked about it, or read about it, it still is and always will be, a big deal.

 http://www.dpcdsb.org/nr/rdonlyres/96281c82-4eff-4008-8ed5-b765cbfd135a/28176/2008springaccessdpnewsletter.pdf

Women: the weaker sex??? get real men!

frequently, I hear men describe themselves as "being a woman" when they think they are being weak. My husband is particularly guilty of this philosophy. this, if nothing else proves that some things cannot be beaten out of you, since, anyone who has lived with me for 30 years would be hard pressed to think of a woman as "weak." I have never been sure about where the whole philosophy came from or why women have allowed it to continue. However, I can testify that after being a Labor and Delivery nurse for 27 years I can attest to the fact that women are definitely not the weaker of the sexes.
I have seen tanks of men faint at the mere sight of a needle or smattering of blood, let alone go through 18 hours of intense pain  followed by 2 hours of attempting to push a watermelon out of your body. I often tell my patients that I did not start the job as a feminist but I sure became one somewhere along the line!
My midwife friend Anne and I agree on one point and that is "who's stupid idea was it to invite men into the delivery room!" no where is the differences between the two sexes more apparent than there. Men want to "fix things and be in control" and I can assure any of them that those things are fairly useless when having a baby. Occasionally, I have the honor of assisting a woman as my midwife friends do: a natural childbirth with no medication. it is at those moments when I remember why I became a birthing nurse and why I am 100% convinced that there is no way women are the weaker of the sexes. the concentration, power and support that is involved in going through natural childbirth is indescribable. every contraction is fought for and a test of endurance. there is no solving, only support and every one of the pains assures us of the power of the female body and the miracle that goes into bringing life into the world. while childbirth is always amazing, an unmedicated birth is truly a thing to behold. there is no force on earth like it and in the core of my being, I know that no man could ever do it.
While giving birth is a testimony to the power of women, motherhood is the true litmus test. it always amuses me that women work, shop, pay bills and care for their husbands and children; but if men are left in charge of the home they are "babysitting." Max would be the first to admit he does not multi-task and nothing needs multitasking as much as parenthood, especially parenting a child with special needs.

When I look back on our child rearing time together it astonishes me how much we got done and how much I did on so little sleep. it is a small wonder now that I love my naps so much! I think I am still catching up. Mothers are ferocious. no one who has ever seen a mother defending her child would have the audacity to describe them as weak. yet, the myth persists. if a man cries he is "being a woman" if he is hurt, he is "acting like a girl." perhaps we should just turn it around and accept the compliment! the last time that Max was foolish enough to comment that he was behaving like a female, I quipped that he should be so lucky! but  dont let them in on the secret. after all, we know that we are the stronger ones so we can give a little|!

the loss of a friend

One week from now will be the anniversary of my mothers passing. I became an orphan. Yet, today what is truly breaking my heart is the loss of my dearest, cherished friend: my beagle mango.
As I have frequently mentioned and penned, beagles and hounds are my dogs of choice; Mango was my first, at least, the first beagle that I owned as an adult. they say that you don't chose the dog, that the dog chooses you. In Mango's case, I know that this is the truth. we found her the week after my fathers memory service. she had been wandering in Scarborough, the place I was born and raised and found on the day of his service. Max had told me frequently, "any dog but a beagle." so I had never pushed it. besides our house was full with Phoebe, Amy and a guinea pig, not to mention 2 very quickly growing boys.
I can still remember the aching in my heart at that time. nothing could fill it; not max, not work, not the boys. the hole from my fathers passing was just too large.
Jarrett and I had some time to kill that Thursday night before his music lesson so we stopped in at the Petcetera to get some treats for the dogs at home and to window shop at the adoptable pets. there was a lovely mixed pup greeting us that Jarrett pointed out and my response was, "yes, but its not a beagle." I turned around, and there she was. Thin, and cheerful, wagging to greet us. Jarrett looked at me questioningly, knowing his father would never agree to a third dog, especially a full grown beagle. Still a girl could dream!
when we got home, Max was working in the garage and I told him there was a beagle for adoption at the pet store. I never once asked if I could have her since I knew what the answer would be. Something in my face must have tugged at him, and believe me, no wife ever loved a man more than i did in the next 3 minutes. He looked pensive and answered, "well, it wouldn't be the smartest thing to do, but then, we haven't always done the smartest thing." Suddenly, that hole left by my dads death was a lot smaller.
there was no looking back. I let the boys stay home from school the next day and was at the store before it opened. Mango was ours. I considered changing her name, but when Connor noted that she was even named after his favourite fruit, I knew that it was meant to be.
Her beginning was auspicious to say the least. although I had been raised with dogs and especially knew beagles, Max was not. The first thing I got her was a name tag because I knew beagles ran the first chance they got. Max took a bit longer to learn this. I think it first sunk in when he jokingly told her to get a cat that was on the other side of our yards fence. Mango promptly cleared the fence and chased the cat down the street. She could climb most of the chain link and run like the wind.
One winter, Max took her cross country skiing. he returned after 4 hours without Mango. I asked him "where is my dog?" he replied: gone. I promptly told him that he best get back out there and find her because at that moment, I liked her better than him! I don't think that he has ever forgiven me for that. Gratefully, in true beagle fashion, she had gone up to a strangers door and bedded down for the night until they could find us. She was no worse for wear, but Max was mad at her for a year!
the last year of her life was hard on her: she went blind, was anaemic and sore; yet she never once lost her cheerful disposition or complained. even the last night she was with me, she laid by my side as if comforting me instead of the other way around.
Our wonderful vet came to the house to see Mango on her way. Strange isn't it that in this ritual at least, we are kinder to animals than to humans. Dr. Michelle cried almost as much as  I did, knowing that this beagle was one in a million and would be sorely missed.
I hope she finds my dad and the bluegrass music in heaven. I hope that she finds lots of bunny trails with cottontails to chase. Most of all, I hope she knows how much I loved her and that it wasn't us that rescued her; it was the other way around. Mango, my beagle blessing, that healed my broken heart.

Passive Aggressivia-Not a fan!

I have rarely been accused of being passive aggressive. In fact, I would venture to say that when others describe me, they skip the passive and jump right to aggressive. I have been described as "blunt, painfully honest, abrupt, direct, candid, forthright and frank. one friend has even nick named me bam-bam.I am not sure if that is from eating ribs while wearing my hair in a pony tail on the top of my head or because she believes that I hit people over the head with ideas; either way, I am rarely thought of as passive.
some of this stems from childhood. both of my parents, particularly my mother, could have given lessons in passive aggressive. a personal favourite passivia trick of hers was to leave clothes on the stairs and expect one of use to psychically know to take the clothes up the stairs without being told too. me, I just would order someone to take it up or better, take it up myself!
while the bluntness has definitely been a handicap in many situations, when dealing with issues as a parent, it has been invaluable. Therapists, doctors, teachers and assistants do not speak passive aggressive. they do not even speak assertive, only aggressive. Never has the adage, "the squeaky wheel gets the oil" been more true, than when you are describing raising a child with special needs successfully! if you try to deal with professionals by being passive aggressive, your child will receive the bare minimum of services. if you do not tell the school system exactly what is needed to deal with and interact with your child, your child will be lost in the cracks. Believe me when I tell you that if people are willing to complain about your child's breath or tell you that 2 hours a week is too much personal service, they will not understand the messages that you imply! you must be honest, forthright, blunt and sometimes even bam-bam! so, raising Connor did not damper my bluntness whatsoever. In fact aspects of his personality actually amplified them. being gifted meant that he was always looking for an explanation and a round about explanation was not going to cut it. Connor once asked what the brain looked like. I foolishly drew a picture of a brain, thinking that would satisfy him. It did not; he required a diagram labelled from one of my nursing textbooks. I knew then that hinting at what I wanted or discussing things in a round about matter would never be enough to satisfy his insatiable need for information.
Unfortunately, some people cannot be cured of passive aggressivia, not matter how blunt or honest you are. I used to say that open, honest communication only worked on the people who took the course. I would outright tell people why it was difficult to participate in some events with our son. houses with stairs, parks with no ramps, hotels with no elevators and more were dismissed with a wave of the hand and a "oh well"
leaving us to deal with the unfortunate realities that would inevitably come from someone failing to be honest enough to admit that the event, occasion or situation was "wheelchair unfriendly."
I have however, noticed that people that do speak fluent "passive aggressive" lead what seems to be a happier and more successful life! after all, they do not get in trouble as being mean or disruptive; nor, do people describe them as "intimidating." but try as I might I cannot  master the art of getting what I want in any other way besides pointing to it and saying "I want that."

However, although I have never learned to speak "passive aggressive" I understand it fluently! and on occasion have been able to translate it for others. In the end it comes down to what can you live with. for some, the only way that they can be comfortable with themselves is by hiding behind the fact that they never actually "said anything." for me it is knowing that although I may be loud, blunt and brutally honest, no one can ever accuse me of not saying what I mean or meaning what I say. So although if I had to be a Flintstones character, I probably would have chosen Wilma, for now, I am proud to be bam bam and living in the real  world not the one with the queen of Passive Aggressivia!

Winter~friend and enemy

the last big snowfall (so far) this season, happened while I was working nights. personally, I hate winter. I consider it cold, bleak and colourless. even though, it is technically, the same length as the other seasons,and sometimes, even the shortest, depending on the year, I still hate it. the frosty darkness, seems endless and constantly depressing. Conversely, Max loves it. I will never understand why. I am sure that it has something to do with all the sports stuff, but it does nothing for me. I even tried embracing winter when I was younger, but taking up downhill skiing at age 21. stupid really, but at least I tried. however, arthritis, child-rearing and having a child in a wheelchair, cemented  my hatred of winter. few things have dissuaded me from this stance. even having a winter birthday, made me hate it more. after all, who wants to celebrate a birthday on the last day of the year when you are still recovering from Christmas (what a rip off!)
Yet, this snowfall was different. coming at the end of February, it was a heavier snow; sticky and wet, it clung to every branch and surface. The storm brought in a bracing wind that spread the white stuff everywhere. since the roads had been frequently salted and sanded, this was a fresh cover that beckoned one to play in it. that was until you felt the wind rip through you! even though, it still was a fairy land sight to enter into as we left from night shift. since I was driving against the traffic flow, it was an easy ride home with little stress caused by unsure drivers. all along the way, the trees seemed to be garnished in wedding lace. as a southern Ontario native, you become accustomed to the changes in the seasons, even the changes in the kinds of snow you can expect. any long time resident will tell you that there is a vast difference between a December snow storm and a February one at the end of winter. Still, this one was special. after all, it would have to be to get a winter hater like me to pay attention. All of the trees had a coating of snow on every branch; as if, a snow machine had carefully sprayed each and every one of them. Since we have lived in our house for 25 years now, we actually have mature trees. furthermore, our yard becomes quite thin near the end and with the heaviness of the added weight the snow-ladened branches came together to form an archway. it could have been the exhaustion from night shift, but as I stared at the branches and the picture they made, I almost believed that I had found the doorway to Narnia with the Snow Queen on the other side.

the air was so clean and fresh, yet colourless as if it was a black and white photo. Usually, I thought of the colourlessness as bleak but today it seemed like a new beginning. none of the worminess of the spring showers that would be coming later.
I found out later that Ottawa did not do as well as Southern Ontario with this storm and Connor underestimated the power of winter, giving him enough trials and tribulations to write his own story of winter and its power. I was grateful as I enjoyed this day that I was unaware of his struggles; because for this day, at least, I enjoyed winter and anticipated the coming of spring.

The Most Annoying: "Yeah, But..." aka now I am going to tell you what I really think

For some reason, people often ask my advice. I would like to think that it is because I exude an aura of sensibility and intelligence; but, I have a feeling that it might be because I am always shooting my mouth off. nevertheless, it is others who come to me for the opinion, which I am usually happy to give. whether it be, advice, critiques or anything along that line, I am not known for being shy about sharing. however, nothing, and I mean NOTHING, will set me into a red flag rage as much as the phrase "yeah but" followed by all the reasons that I may or may not be wrong about what I just shared.
Why in the world, would 2 words set a person off so much. well, for starters, it doesn't take much to set me off, as many of my family and friends will tell you. but mostly, it is because I did not seek out the person to give them my advice; they sought out me. ostensibly, because they thought that I might have some expertise in the area that they needed advice in. indeed, I even could be an expert in some. still, the yeah buts are always on the tip of peoples tongues.
my question is this: "Why do people ask advice then argue with it. If you are asking for an expert opinion, realise that you asked the expert. They are the expert not you. Just make sure that you ask the right expert. Don’t shop around until you get the answer that you want. It is insulting and annoying." yet that is exactly what they are doing.
Connor has also frequently run into this dilemma and shared the experiences with me. sometimes it is to do with managing his disability; sometime just with life in general. it seems that everyone thinks that they know better.
I believe that part of this phenomenon is because, as a society, we have become lazy. we do not want to know that to achieve the results that we want, we may have to work harder than we ever have before. we do not want to know that in order to achieve a goal that is worthwhile, we may have to sacrifice other things including our time, or our luxuries. we want to believe the drivel that is spoon fed to us on television: that you can have anything that you want, instantly.
wake up call here people: you cannot, despite Bill Gates vision of our universe, there are still things that take time and effort.
I first realised this dilemma when my kids started getting older and people would ask for parenting advice. I am known for the ideology that "Nintendo makes your brain melt" and other oddities, yet others would keep looking for the easy fix. I recall one conversation, where myself and another mother, who's children were about 9 years younger than mine, kept looking for that easy way; the way to be friends with your kids and still have them respect you. no matter what I said, I was met with Yeah but. I simply gave up and said we could revisit it when our children were adults to see which ones had succeeded the most and were still loving towards their parents. (she has yet to take me up on it!)
For the most part I am quite forgiving of the yeah buts; i get it: you want to explore all the options. but after answering 2 or 3 on the same question, it wears a person down. So I propose a compromise. if you are asking someones opinion, first recognise that you asked that person for a reason; you thought that they would know the answer. second, you get one "yeah but" if the so called expert can still give you hard evidence that the answer they have given is rooted in fact and reality, accept it. after all, if it was easy, you would not have had to ask around. so for now, I am putting a moratorium on "yeah but" one per customer!

the government of Ontario-aka Are you Kidding me!!!

Like most persons with a disability, Connor receives a disability pension, know as ODSP--Ontario Disability Support Pension. this pension is fraught with irony. Unfortunately, irony is not something that people with disabilities are usually looking for in their lives. After all, the universe seems to have provided quite enough irony all ready provided in excess.
Firstly, the name: Disability Support Pension. since I am not retired, I do not know what and how much is involved in a pension. what I can tell you is that a Disability pension at most is $1073 per month. that is to cover housing, food and anything else you might need. considering how much apartments are these days, let alone accessible housing, I find it difficult to ascribe the word "support" to this pension. Additionally, if the disabled person chooses to (or is able to) find employment, their pension is "clawed back". that's right, the supportive government, takes back the support and penalises the person for working. yet, the pension is not enough to live above the poverty level.
It gets better! if the disabled person happens to work, every month they are expected to "report" their earnings. Now if you were able bodied and on Unemployment insurance or long term disability, you can do this on line. Not so if you are receiving ODSP. the person receiving ODSP, is expected to fill out, by hand, the form attached to their cheque and fax it to their local ODSP office, wherever that might be. If not, their pension will be put "on hold."
Oh I am not done! Consider that the average person who is receiving ODSP, is receiving it because......THEY ARE DISABLED!!!!!! Which means, as in the case of Connor, they are not able to write, fill in a form by hand, sign their names, program a fax machine (as if they could afford one on a 1000 per month) and feed said sheet of paper into the fax machine. Ironic hey?????
In Connor's case it is even more ironic (at this point feel free to insert the word asinine) Connor is a full time student at Carleton in his masters program. he has been awarded a teaching assistant position that he is paid for. According to ODSP's own rules and posted on their website, if a person is attending school full time, they do NOT have to have any of their earnings clawed back. Initially, it took a 20 minute phone call to explain to his worker the difference between undergraduate and graduate work. she thought that since he wasn't taking 5 courses he wasn't in school full time. even when I pointed out that she had a piece of paper sent from the school that confirmed his full time attendance and that students with disabilities were considered full time if they took a 70% load or higher, she still could not see her way clear to understanding that Connor was indeed a full time student.
After what can only be described as an extremely painful phone call, she did indeed see that he was full time and as such did not have to have his earnings clawed back. In my mind that should have been the end of the discussion and of the problem. However, I failed to factor in irony and its omnipresence in my life.
when the next month arrived, there was once again saying that Connor's pension was "on hold" due to his earning statement (the previously mentioned one that needs to be filled out and faxed) had not been sent. there must be some mistake I thought. after all, had I not cleared up that Connor was in school full time.
After another equally painful phone call with his worker, it turns out that even though they have proof of his full time attendance at school, with the requisite paper work and documentation of how much all this costs, they still expected that EVERY MONTH, a statement of earnings would be filed. I enquired that if, in this electronic day and age, could it not be done on line? oh no was the answer, after all, it might not be his worker picking up the mail and then it would not be processed.
there are physical bite marks in my tongue at this point.
I have many theories about why our world is so screwed up and what we need to do to change it. but this event says it like no other. NO ONE would expect the elderly, veteran, injured or any one else except the disabled community to put up with this nonsense. I know that there is much fraud in the system and there needs to be safety valves in place to protect the tax payer but I cannot believe that victimizing the most vulnerable members of our society and hobbling their ability to have a quality of life as good as they deserve is the way to go. this is not going to change until everyone speaks up and is aware that it exists.
There is enough irony in the lives of the special needs population, we do not have to pile more on. the universe has put enough in place.