March On

 

March is epilepsy month. Yesterday was purple shirt day and I missed it. I like to show my support for something that has had a huge impact on my life and on the lives of those I love but, on a personal level, it’s not a bad thing to forget purple shirt day at all. I haven’t had to think of epilepsy and worry constantly every day for a few years now. Our guy is doing just fine.

He’s in high school and doing well. He has friends and interests, swims like a fish and has a fabulous sense of humour. No meds, no seizures. for several years now but our guy still tires easily and is a little shaky sometimes. He’s the grandchild I worry about the most – nothing specific – it’s just it was so awful for so long that it seems to be tempting fate to relax a little.

And there is still that black dog hanging around in the shadows – our guy’s health status could change at any time. We were warned that adolescent hormones could wreak havoc, sometimes in the worst ways. I pray it won’t. I can’t live in a world of “what ifs”. The only direction is onward in all directions.

Our guy had his first seizure 13 years ago on March 27^th. We’ve all come a long way since then. His grandpa isn’t quite as broken as he was 13 years ago when our guy collapsed on our living room floor and his grandpa and I thought he was going to die, the days of multiple daily seizures are far in the past, and although he was delayed at school for a long time, he has worked hard and made up for lost time.

I read a quote somewhere a long time ago – “The first thing a child with special needs learns in school is that he is flawed and that flaw is the most important thing about him”, so very true but what is inexcusable is that what is learned is very difficult to unlearn. There isn’t a whole lot our guy can’t do these days, but he doesn’t know that. He is reluctant to speak up and he doesn’t think he’s very smart. As he continues to grow, I hope he comes to realize what a unique, thoughtful and intelligent individual he really is.

March is Epilepsy Awareness Month

I seem to have missed a year but that’s okay because our guy is doing well. He is growing up into a lovely, compassionate young man with a fabulous, quirky sense of humour. He swims like a fish, holds his own in school, has friends, and now likes many more foods other than just pizza. For the most part, he is happy with his life.

I hate it though, when people take advantage of him. He has a soft heart and doesn’t like to make waves. He’s not a crowd pleaser – he speaks his own mind and stands by his convictions, but sometimes even those who should be supportive take advantage of his gentle nature and willingness to agree to take on someone else’s dirty work.

I often wonder why this is so. As for the takers, it’s easy for them to get someone else to do the things they don’t want to do and if they can find a mark, they take advantage. It’s the way the world works.

But I wonder why logical, strong-minded our guy ends up with the dirty jobs. This often happens to children who face a challenge. I think it’s because their expectations for themselves have been worn away by years of standing in the background and, consciously or not, being treated as “less than.”

It happens in school – who is chosen last for the team, who sits on the outside of the group and isn’t allowed input, who is never chosen for the “good” jobs, who gets the eye-rolls and the shoulder shrugs when someone is confused over directions? Who is overlooked at awards time and special privilege time? It wears on these kids. They don’t say anything, they may not even feel anything, but inside that attitude of “less than” seeps in and sticks.

It happens with friends and family too. Our guy is familiar with the phrase, “oh well, it’s just the way our guy is.” His mom has fought for almost 12 years to make sure this doesn’t happen in her presence, but she’s not always there. There’s a fine line between giving and giving in.

Our guy has been taught, sometimes subliminally sometimes blatantly and cruelly, to see himself as “oh well, it’s just him.” The “oh well” and the “just” speak volumes toward his internalized attitude although sometimes it works in his favour. He reads people very well and knows almost instantly whether he needs to be a “regular guy” or “poor our guy.”

The thing is, he knows he’s a good guy. He knows he is kind and he knows he is loved. He knows he’s a good swimmer, he knows he can read well and he is proud of good marks he gets on his school work. But when it comes to doing something unpleasant, something that no one else wants to do, the task is often given to our guy. His internal messenger tells him that the good jobs go elsewhere and the crap falls on him. He gives in.

I wish there was a way to change the internal messaging into something more positive. Of course, he should do his share of the bad jobs along with everyone else but not always. He needs to share in the fun jobs too.

Sometimes I wish our guy was more of a rebel.

March is Epilepsy Awareness Month in Canada. Go to http://www.epilepsy.ca to learn more about seizure disorders. Education is the key to understanding.

March 26 is purple day. http://www.purpleday.org

Rose Coloured Glasses

March is Epilepsy Awareness Month and time for an update on our guy. I am thrilled to announce he has been seizure free for 3 years and is now off medication as the result of two “twitch-free” EEGs a year apart. This is fabulous for him after so many years of enduring numerous seizure types and lethal medication to control them. I am happy to announce he is fine now.

REALLY?

When friends and relatives learn that our guy is seizure free/off meds they tell us all we must be so relieved now that he’s better. It’s easy to look at a seizure disorder minus the seizures with rose coloured glasses. Human nature wants everything to be hunky-dory, but this isn’t a fairy tale and it doesn’t have the promise of a fairy tale ending. Because he no longer has alarming visible seizures, others can’t see the residual damage and daily challenges our guy bravely faces.

A syndrome is a combination of symptoms and signs that occur together and characterize a particular abnormality and so it is with myoclonic astatic epilepsy or Doose Syndrome (our guy’s specific albatross.) It consists of numerous and various types of seizures but it also brings with it a number of afflictions secondary to the seizures, some of which may disappear over time (as the seizures currently have) and some of which will be with him forever. That’s the best possible scenario, the worst being a return to seizures and a new struggle to control them, which happens in about 20% of cases.

We walk on eggshells and are often considered pessimistic/overly dramatic. The reality is, our guy is a thoughtful, engaged ten-year-old who participates enthusiastically in daily activities but often falls asleep before dinner because he’s exhausted with trying to keep up with a normal school-day routine. He’s an optimist, willing to give everything a shot but his muscles are weak and he tires easily. Some other components of the syndrome include his tremor and sensory issues. He lacks the ability to focus, has poor impulse control, and difficulty with emotional regulation – a result of impaired executive functioning. Add to that, a global learning disability and a developmental coordination disorder which causes severe fine and gross motor delay and you have an inside view of our outwardly fine little boy. Our smart wonderful guy who once tested as gifted is now challenged.

Years ago, when our guy first became very ill, I had a dream. I was sitting on a beautiful beach with golden sand gazing at a horizon of peaceful ocean. I was holding our guy, pointing at the waves and seagulls. He seemed happy but could no longer speak. Then, on the waves, life rafts appeared but they were drifting away from us. We watched them and gradually the people that we loved began to materialize in the boats. They all floated away – our guy’s parents and brothers, Grandpa, aunties and uncles. Soon they disappeared and we were alone on the beach. I awoke terrified, knowing that there was no life boat for our guy and terrified that I wouldn’t be able to stay with him. The dream haunts me to this day.

Our guy has a small but dedicated group of people who surround him with love, encourage his efforts and cheer his accomplishments. He loves swimming, Taekwondo, cooking and video games and in the past year has become a very good reader. He was gone for a couple of years back then, disappeared, missing in action. We like to think he is slowly catching up, that he will get to where he’s meant to be but it will just take a little longer to get there. Reality is harsh but our guy’s family is allowed rose coloured glasses too.

 

For further information www.epilepsy.ca and www.epilepsycalgary.com 

Water-bearer

Amazingness is relative to the situation and in this day of instant everything, it is sometimes difficult to maintain a perspective on what is really important but four years ago, while visiting my husband in the hospital, I met a lady who altered my view of life.

While at the hospital, we often escaped my husband’s tiny space and sat on one of the benches provided for hall-walkers. Mostly we discussed the state of the health care system, the dinginess of the hospital and the friendly and efficient but overworked staff.

One day, we heard a woman humming as she approached our bench. Dressed in hospital scrubs, she was pushing a cart loaded with bottled water which she was distributing to patients. Friendly and enthusiastic, she radiated joy.  “How are you today? Are you thirsty? Would you like a bottle of water?”

We’re fine, no thanks, we said, but she stopped to talk. “Do you know,” she said, in her sing-song accent, “that I have the very most important job in the hospital? I am the water-bearer. In my country there is no life without water and the person who brings the water is the most important person in the village. Where I come from, we spend our lifetime searching for it. I must go now and take the water to these people.” In a sweeping movement, her arm indicated the rooms in the hallway in front of her and, continuing to hum, off she went.

The whole conversation took about one minute but it had a huge impact on me. While I spent my time thinking about what I didn’t like or didn’t have, she was content with her life and what she could give back. Her service to others fed her spirit and the pleasure it gave her shone through her eyes and landed on all who met her. I envied her selflessness and the peace she conveyed.

While I was complaining, this lady was doing the most important job in the world and was happily at peace with her ability to perform a service for others – a lesson in how to bloom where you are planted and in the reward of giving to others.

                               from airdrielife magazine (Spring 2015 issue)                                          

Mothers and Daughters

Thou art thy mother's glass, and she in thee
Calls back the lovely April of her prime.
                                                            ~William Shakespeare

In some cultures there is a reincarnation belief – elderly family members who have passed away come back as children in the same family and the cycle continues. In theory, a mother with a daughter may be parenting the reincarnated essence of her mother – the child and the grandmother have the same spirit. This is simplistic, of course. There is a complicated belief system involved but what I wonder is, can the child be born while the grandmother is still alive and still be inhabited by the spirit of the grandmother? And the bigger question – how does the mother, caught between two such powerful female forces, fit in? Talk about being caught between the proverbial rock and hard place. The solution, I suppose is to be still and listen and learn.

One of my daughters resembles her father’s mother and the other, alas, is my mother reborn. Strange that I should say “alas” when all my friends thought my mom was THE BEST. They enjoyed her acceptance and hospitality but Mom and I circled and locked horns over almost everything until I moved away from home. It took time and distance to transform us into good friends.

When daughter number two, the one just like my mother, was growing up, my spider senses told me to watch out. She had inherited what we called the “Grandma” gene. This child of mine was someone to be reckoned with. Her fierce determination and persistence, her stubborn pride, her ability to meet challenges head on, and her open honesty were, at first, points of contention, especially with her grandmother. “Dear, you can have a cookie if you help me in the kitchen.” “It’s okay Grandma, I don’t want a cookie.”

 

I watched in wonder as the child and the grandmother took turns, shooting and scoring. One or the other was always saying the wrong thing, looking at each other sideways, pushing away rather than drawing together. They circled each other like the opposite poles of a magnet not knowing that if they each just turned a little bit, they would be drawn together by a mighty force. I wasn’t the referee in this action but a fence-walker, often losing my balance and falling soundly into one camp or the other.

These women, my mother and my daughter, never knew each other as adults, but as my daughter grew older, I noticed something else. I learned that these powerful characteristics – the ones that made me crazy – were good and honourable and incredibly handy when it came to dealing with the curves life throws at us. Tenacity, determination, persistence and her constant open honesty have serve her well. Through my daughter, I learned to understand my mother better.

 Sometimes I hear a voice coming out of my mouth that isn’t mine, but I surely do recognize it. And sometimes, when my daughter speaks to her children – my lord, it sounds like me. Have I been an active participant in this dance all along? If you were to ask my husband, he’d tell you the “Grandma” gene didn’t skip a generation at all – that I am my mother and my daughter is me.

                                                                                               

Double-Edged Sword

March, Epilepsy Awareness month in Canada, is here again and the update on our guy couldn’t be better. He is happy, healthy and busy catching up.

Over the past seven years, there have been many ups and downs – a first seizure seven years ago, followed by many more, began  a perilous journey. At first there were many seizures each day, varying in intensity and type, loss of speech and awareness – we were all on the roller coaster to hell. But you do what you can. You cope. You have no choice.

Many tests, many doctors, much angst and over a year later, our guy’s drug combination finally controlled his seizures. He got stronger, became more aware. He began talking again. But the side-effects kept him unfocused and tired, making it difficult for him to learn or play games that had rules to follow. He was easily distracted, came unglued easily, and he had sensory issues, especially with food.

There have been ups and downs at school – a couple of amazing teachers have gently guided him but there have been others who have exemplified the quote, “The most important thing a child with special needs learns in a school setting is that he is flawed and that flaw is the most important thing about him.” We hope for the good ones. Preserving his rights and his dignity has been an ongoing challenge for his mom. But there have been wonderful teachers, amazing summer vacations, hikes with his mom and brothers, movie nights, snuggles and much love.

So here we are, more than half way through grade four. Our guy has been drug-free since Christmas. His amazing teacher guides him with love and respect and is as excited as we are at the rate his attention span, his interest level, and his reading ability are improving. For the first time ever, he doesn’t want to miss school. He is trying new foods, he is learning to swim and this past winter he went skiing.

But it is a double-edged sword. On one side there is hope – hope that the seizures don’t return and that our guy never has to spend another minute in that lost world he inhabited for six years. We hope he continues to grow stronger and learn and succeed. Dare we hope there is a bright future for this young man who is so kind and so bright. 

The other edge of the sword is fear – the incomprehensible fear that in the blink of an eye, our guy’s world can be turned upside down again with a return to seizures. There are no guarantees, only the hope that this nightmare is over. There are lesser fears – next year our guy will go off to middle school where he will be a little fish in a big pond. Will he find teachers that will nurture and gently guide him or will our guy be destroyed emotionally yet again? He will have friends but there will also be bullies – can he cope? Can his big brother be close enough and strong enough to help him? Hope and fear go hand in hand.

We wait in fear for the other shoe to drop and we hope that it does not. We remember the terrifying day long ago and the long physical and emotional struggle to get our guy back. We look to the future with optimism. Even though the journey has been terrifying at times, frustrating at others, we have no choice but to go forward and no desire to go back. We are all changed but our guy is doing well. The journey has been worth the struggle. Today our guy is an amazing young man.

 March is Epilepsy Awareness Month in Canada. Go to http://www.epilepsy.ca to learn more about seizure disorders. Education is the key to understanding!

A little late, but ... oh well.

On the Sunday sandwiched between Black Friday and Cyber Monday (which is probably relevant to the crankiness of the shopping hoards) I stopped at Bed, Bath and Beyond. But before I rant on, I must say that the staff at BB&B is a shopper’s dream. Everyone is polite, smiling, and helpful. I don’t know how they all remain pleasant under such busy circumstances but they do and I truly appreciate it.

I had phoned ahead for the item I wanted so I know they have it put away somewhere. At Customer Service I wait for a very long time while a man buying stools hits on the clerk. When it is my turn, I ask the very nice young lady if my item is put aside. She says no but she will check with the cashiers at the front of the store. Another customer stands behind me, impatiently fidgeting and huffing. How dare I hold up the line while the clerk goes to find my merchandise? She sighs, very loudly and directly. I turn around and glare at her.

“What?! I dropped something,” she says, which is clearly not the case but I suppose she needs some sort of defence because she has been pretty rude. The obvious audible agitation was aimed at me – how dare I take the time to ask a question. I refuse to be treated like a pain in the neck so I give her the look, the up and down, up and down – the green-eyed stare. It wasn’t until the second up and down that she looked away. A point for me.

The clerk comes back with my item and I take it to the checkout with the shortest line. It is a slow process. I am standing behind a couple of other customers and there is another lady behind me. We form an obvious line. Just as the couple in front of me approaches the till, a tall, well-dressed 30-something shoots out from between two display shelves and stands in front of me. “Excuse me,” I say.

“I have been standing behind this man for a long time,” she says.

“Not nearly as long as I have,” I say.

“Oh. Whatever,” she says, obviously displeased and maybe a little embarrassed. She moves to stand in another line and the lady behind me chuckles.

Have I just had the unfortunate experience of meeting two unpleasant people and everyone else is just fine or are there other dynamics at play here. My recent women and gender studies course and my research on ageism causes me to question motives and view myself as I never have before – as a disappearing entity with little value in our society. I have always hated condescension and I will not step out of the way because some sweet young thing is in a hurry, just because she thinks I should.

I am not sure who I should be angry with. Should I be upset with our culture and our society because it places little value on the elderly because they are no longer a functioning cog in the wheel? Should I be upset only with the young women because of their displays of condescending bad manners? Or should I be upset with myself and other women my age? After all, my generation raised these pretentious, self-centered individuals. We strived to give our children the all the things we didn’t have. We wanted to make their lives easier, not realizing that a little struggle was okay and instant gratification wasn’t such a good thing. They lived an advantaged life. We were too generous.

The whole experience was a bit unsettling. However, there was a little spark of joy glowing in my heart as I left the store. As I passed the other checkouts I noticed that the young woman who wanted my place in line was still standing about four people back at another check-out.

 

 

 

Thank Heaven for Brothers

Each morning I watch my grandsons as they head out across the large school yard to their respective doors. The youngest goes one way, the other two, our guy and his older brother, go a different way. They have the longest distance to walk to the shared grade 3 and 5 door. In this frigid winter of temperatures in the -20s and high wind chills, trudges better describes their movement across the open playground, heads down against the wind, older brother leads the way, our guy follows in his footsteps.

The scene has repeated itself daily through a long cold February and early March. Older brother turns, offers words of encouragement, frustration or panic depending on how far behind we are on any particular morning. ”Come on,” “hurry up,” “faster,” “run,” “we’re gonna be late!” Big brother has several speeds but our guy has only one.

Older brother is pretty great. He understands that our guy can’t move as fast as he can. He also knows that his brother is physically weaker and gets cold faster than other kids. He is eager to start his day and be with his friends but he knows that once they get to the school, our guy, loaded down with heavy clothes and backpack, doesn’t have the strength to pull open the heavy door. Big brother’s job is to make sure our guy gets inside. Big brother complains about many things but never about keeping our guy safe.

We all hover around our guy – we worry about him. We also wonder what the next neurologist appointment will bring. Good news – another clear EEG, or not so good news – still strange activity happening in his “tricky” brain. And if the news is good then the slow process of weaning the meds will begin and then what? Will our guy go on to lead a drug/seizure free life or will the body and mind breaking seizures return him to a world of strong and dangerous medications. The journey continues.

We watch and wait and in the meantime, our guy is doing okay. He’s a neat kid. Sometimes as they walk across the school ground, our guy straggles way behind and big brother turns around again and again, urging him to hurry. Other times he follows close – very, very close.  Big brother turns to check on him and smack, our guy runs into him. I laugh both at our guy’s up close and personal presence and big brother’s eye roll. They trudge on.

Our guy has his issues and is sometimes labeled by his seizure disorder, but he is so much more than that.  He is the peacemaker, the quiet voice of reason amid his three active brothers. He finds solutions, makes allowances, is wise beyond his years. The other kids like him, ignore his “bad” days and include him because he’s a nice guy and they want to be his friend. His grasp of situations and his determination make my head spin. He has the gift to be able to cut through the crap and see the truth of most situations very clearly. He tells me he doesn’t understand why people say they’ll do stuff and then don’t do it. He’s had a lot of experience with that.

Sometimes his friends tell him he can come to their birthday parties, but the invitation never arrives.  The same with play dates. The kids include our guy without hesitation but their parents, who have seen his outbursts and know that he needs an assistant at school, leave him out and that’s too bad. They would be richer by far if they got to know him. He is in grade 3, but other than family you can count his invitations on one hand. It makes him sad. He doesn’t understand. It makes me sad too.

This close-knit little family forms a protective bubble around our guy and in that way, he is fortunate. So many children with disabilities have no one to advocate for them within their peer group and when parents so easily brush off a child that is different, it doesn’t take long for their kids to follow suit. Bullying happens. Often these kids don’t have the skills or the words to defend themselves and if tolerance isn’t being taught at home, a brother or two comes in mighty handy.

But our guy doesn’t hold grudges. He takes each day as it comes with acceptance, optimism and an open mind. He trudges along, following his big brother. And next year, when big brother goes off to middle school, I have no doubt that little brother will step up and take his place as leader/protector/friend. I find it serendipitous that our guy will likely always have a brother in the same school to make sure the door is open and he’s safe inside.

March is epilepsy awareness month! For more information go to  www.epilepsy.ca

Chivalry is Dead.

What do you do when someone falls down in front of you? Maybe I’m weird, but I offer what seems appropriate – I hand up, condolences, a sympathetic smile, further assistance if necessary. I need to mention that there are so many kind, caring, compassionate people in the world that I almost, but not quite, feel guilty about writing this post. Maybe I’m off base. Maybe I’m just unlucky when I fall down.

I don’t fall down a lot. I can count on my fingers the number of times I’ve fallen down as an adult. It’s always embarrassing and sometimes a little painful but I’m built close to the ground with ample padding so I’ve rarely injured myself. Usually I feel a little foolish and hope that no one has noticed… or maybe not. Let me explain.The past three times I’ve fallen, more than my knees have been it has bruised.

A few years ago, I was waiting for one of my favourite little guys to get out of kindergarten and I slipped. There was ice under the water and mud and down I went. It was messy – I probably splashed. There were moms standing around, a few dads and school bus drivers waiting in their buses. I wasn’t hurt and I picked myself up quickly with only my dignity injured. Only one young mom approached me and asked if I was okay, was there anything she could do, did I want to go into the school etc.? I thanked her, told her I was fine. Her attention made me feel better. I like to think that’s how I would have reacted. After all, I am not invisible.

Then, last winter I fell while walking the dog on our usual path. Jake was acting like his usual overprotective, foolish self so I tried to make him sit behind me while a group of young people went past. These were not kids, but two couples out for a stroll. I tripped over the leash and down I went.

Embarrassing to do this on the pathway right in front of people, no? I got up and brushed myself off and glanced self-consciously at the passing 30-somethings. There wasn’t a smile or a nod – just what I translated as condescending stares at a silly old woman who shouldn’t be out there is she can’t stay on her feet. I silently cursed them to take their chances on the next patch of ice.

I was angry, not at them personally, but at an attitude that seems to be becoming more and more pervasive. Compassion for others seems to be lost. Don’t these folks realize how quickly the years pass or how instantly their own circumstances could change?

However, Friday morning’s incident was the icing on the cake. When I dropped off my grandsons at school,  I waited on the sidewalk and watched them  go to their respective doors. Then, as I turned to go back to the car, I slipped on ice and fell. No one seemed to notice and that was okay.

I wasn’t hurt. I didn’t expect anyone to come running to my rescue but as I began to pick myself up, a dad and his two kids came toward me. I had to wait as he and his kids stepped around me. Come on! He had to notice me there kneeling on the ground. But there wasn’t a word, a hand, or a smile. Nothing.

For some reason, this shook me to my core. When I returned to the car, I cried, not because I was physically injured but because I felt emotionally hurt, overlooked and insignificant. And I felt very, very sad because so many people are too busy to offer a smile, a hand up or kind word. What’s more, they are teaching their children that it’s okay to behave like that. I am not invisible, damn it.

A Little Bit of Humbug

This past week I attended a wonderful Christmas concert at my grandson’s playschool. Sixteen four-year-olds sang and danced as parents and teachers proudly watched and prompted respectively. The whole show was quite amazing, both in content and competence, much thanks to Mrs. M and Mrs. A – such a lot of love and hard work to bring them to this point. I was proud to be a member of that audience. That said, the reason I’m blogging is because of what happened before the concert.

Just a little thing, nothing earth shattering – or maybe it is. Let me explain. I arrived a little early,  before all but one other lady. Once inside the spacious coat/boot room, I stayed just inside the door as the moms, dads, siblings and grandparents arrived.

Being the helpful person that I occasionally am, I opened the door and held it when I heard others outside. The first family came in, mom carrying gift bags, dad carrying toddler. Another group arrived, I opened the door, smiled.  A third group – the same.

At this point I am beginning to feel a bit like a friendly Walmart greeter so I decided to keep some very informal statistics. For the rest of the arrivals, I opened the door, smiled, and attempted to make eye contact as people arrived. Out of the 40 – 45 adults gathered, only 8 adults acknowledged my presence by saying either “thank you” or “hello”.

I understand that people are busy and fitting a playschool concert into a crowded schedule is a challenge for some. Minds are not on the automatic door opener. I’m a familiar face to the moms and dads that I see twice a week as they drop off and pick up my grandson’s classmates, but invisible?

I know from volunteering in this same little class that the kids are cute as buttons but as pretentious as hell too, some with a very distinct four-year-old sense of entitlement which, in my own observations, the teachers handle with kindness, dignity and firmness. Manners are important in the classroom.

So, I’m wondering – Grown-ups, haven’t you ever heard of monkey see, monkey do? Or in more polite terms, do you not understand that you, as the adults in these children’s lives, are their first and most influential role models?

I do not think for a minute that I deserve accolades for opening the door, nor do I think even one of those adults meant to be rude. It just seems that consideration toward others, especially to those we don’t have a direct connection to, is a thing of the past. And I think that is really sad.

As we left, my daughter held the door for me. I automatically said thank you. She laughed, said it was a test. I guess I passed.

Boomer

As if being a woman of a certain age and having lived a somewhat June Cleaverish lifestyle, at least in the 1960s, isn’t enough, my generation fits into that recently despicable segment of society known as the Baby Boomers.

The Government of Canada defines Baby Boomer as someone born between 1946 and 1965, so why, when the first Boomer celebrated his/her 65^th birthday in January 2011, did the media proclaim that our economy would plunge immediately because a huge burden had suddenly been dropped on every self-serving 30-something, give or take ten years either side? Considering we’re healthier, wealthier and better educated than previous generations, and that most of us will continue working for many more years, there’s no need to get so excited. After all, isn’t 60 the new 40?

Baby Boomers were welcomed after WWII – cuddly bundles of joy into a world at peace. The Depression was over, jobs were plentiful and our parents raised their families in an increasingly affluent society. The Boomers thrived, schools were as overcrowded then as they are now, moms went to work, TV became the babysitter, and the Cold War scared the socks off everyone. The Boomers grew up, forsook their parents’ sensible shoes, wore sandals and beads and went to Woodstock.

Then they became responsible adults and earnestly strove to create a better world. Honest. We did our best. After the party that was the 60s for many of us, we settled down. We were good providers and we had great expectations for our children whom we fully expected would do better than we did. We worked hard to ensure that happened, and … it did.

The world we created has flaws, major flaws. Some would say we messed up. But we also made enormous strides in human rights, technology, communication, health care, transportation, infrastructure, comfort of living and quality of life. Major changes as well as simple benefits like maternity leave, mental health days and more than two weeks summer vacation to name a few, were imagined, fought for and achieved during the Baby Boomers’ tenure.

So, we’re getting older – off to the ice flow we go. We may have gray hair and some wrinkles and let’s face it, our eyesight and our hearing are challenged, but we didn’t suddenly become dumb. We offer love, support, experience, wisdom and the occasional handout. And most of us are still excellent drivers.

As seen in airdrielife magazine, Winter 2012/2014 (lifetimes column, p.59) www.airdrielife.com

Life Is Good

Good news comes in a tempered package. The results of our guy’s 24 hour EEG a couple of weeks ago were more than we could hope for. No spikes, no blips – there was no unusual activity happening in his brain. Wonderful news and his mom will learn what this means and what, if any, changes will ensue at an appointment with the neurologist tomorrow but since receiving the news, I’ve been feeling more optimistic than I have in the past five years. His future is less bleak. This is a step forward rather than backward, and life is good.

But, and there is always a but, it’s only a step, a rung up on his sky high ladder. His clear EEG measures the activity of a brain drugged heavily with anti-seizure medication. What would it look like without the meds? Maybe a gradual reduction is in order – the doctor will decide. The fact that his dosage hasn’t been increased since he was stabilized on these meds four years ago is a good sign. His growing body has gradually needed less to control the seizures as his weight and size have increased. Life is good.

Our boy will always be our boy. Other quirks go along with the syndrome. He is weak and tires easily but his heart doesn’t know this as he pursues his daily activities with enthusiasm. He’s the only seven year old that I know that puts himself to bed at 6:30 but knowing that his tiredness has followed a successful  and active day makes it okay. Life is good.

He has difficulty as school, but this year with the love and attention of a most excellent grade two teacher, he has grown by leaps and bounds. And he is happy to be at school again. Life is good.

Socially he’s a bit of an oddball, but he is kind and sensitive. He’s a lover not a fighter. He has a wonderful sense of humour, a unique perspective and he’s really, really smart. The other kids like him. He’s not a victim. Life is good.

Feeding him is still a nightmare. His sensitivity to textures and his unwillingness to try new things make us nuts. He doesn’t recognize hunger and if something doesn’t look right he won’t eat it. He eats a very limited number of foods and when he decides he doesn’t like an item anymore, we have to search for a substitute to keep him nourished. However, there are a few foods that he eats consistently including grandma’s buns so he won’t go hungry on my watch. Life is good.

Now, if only others could measure what this all means in a rational manner. The first comments after the EEG, even from those closest to our guy, are over the moon. “So good, he’s better, he’s cured, no more problems”. It puts a damper on the joyful news because no, he’s not cured. Everything is not alright in the sense that others refer to better and alright.

Often people lose patience with chronic illness and perspectives become skewed. A child’s struggle is hard to watch. It is easier to believe the illness is finished and that the quirks and the behaviours are due to something else – something with a practical and easy solution. It is hard to accept that what is, really is. These results are indeed wonderful news and I am filled with hope but there is a long road ahead before everything is “better”. However, we’ll take what we can get. Life is good.

March is Epilepsy Awareness Month - Grandma's Story

The future can turn on a dime…
 

 

Five years ago this month, on a fine, sunny afternoon, our guy, our second grandson, came to visit. At 2 ½ he was growing, thriving, learning, and he wanted to play and have dinner at Grandma and Grandpa’s house. We welcomed the opportunity to spend time with him alone and were thrilled at his growing independence.

There was nothing unusual about this day, no clouds gathering on the horizon, no pictures falling off the wall, no birds in the house, nothing foreshadowing the events that were to follow. His mom dropped him off and he played with his toys in the living room under his grandpa’s watchful eye while I started dinner in the kitchen. Life was good.

Suddenly Grandpa was yelling – Something is wrong with C. Help!

I rushed to the living room to see my husband cradling our limp and unconscious precious baby in his arms. I took him and held him, noticed his body was twitching. His eyes rolled back, strange clicking noises were coming from his throat. I cursed, I prayed don’t let him die – help – please. I cried. I remember saying – call 911. How was I going to explain this to my daughter?

 He must be choking, I thought. I turned him face down across my knees, thumped him on the back, turned him over again and searched his mouth to see if I could feel an obstruction – all the wrong tactics to handle what was actually wrong.

But I didn’t know. Until this point, I had only seen a couple of seizures when I worked with children with disabilities. Out of context, I didn’t recognize what was happening. The seizure may have lasted for a minute or an hour – the fear of losing the little guy kept me suspended in time while I held his trembling body. I had never been so scared. My husband, who spent 25 years as a police officer, had never been so terrified.

 

Then our guy started to come around and I gently laid him on the floor and sat with him, stoking his forehead, his arms, desperately wanting to wake up from this nightmare. The paramedics arrived. His mom arrived. Off they went in the ambulance – the beginning of a very long journey.

 That moment, that blink of an eye, that turn on a dime, changed us all. Some of us were broken, some of us became stronger. Some pieces of our old lives survived, some parts were gone forever. Some of us were tougher and more committed than others.

This experience and the years that followed changed the core of my being. Until then I had always flown by the seat of my pants, trusting that things would work out and everything would be okay. Albeit naïve, it was a great philosophy. I became more responsible, more thoughtful, more organized, but less trusting, less secure, less optimistic. More sorrow, fear, and stress have been added to my life but also more joy, more appreciation, more determination, more acceptance. Bad and good combined.

Five years later, I persevere with the hope that our guy will have a rewarding future and an understanding that he will have limits. The trick is to find the right balance. Life is good.

Recently our guy had an appointment with the big guns, his pediatric neurologist. They see each other semi-annually to review progress, setbacks, drugs, symptoms, concerns, new procedures – all that worrisome stuff that never ends. It was a difficult appointment for his mom for reasons any mother would understand and for our guy because he will have to get some “pokes” (blood work) in the near future and he doesn’t like “pokes”.

But his sense of humour remains intact. When prodded by Grandpa (who should know better than to ask questions during a favourite television show) how his visit to the doctor went, our guy said, “He hit me with a hammer.” Subject closed. (Testing reflexes, I’m guessing.)

 For the adults in our guy’s life, the results of the appointment weren’t so much a surprise as a disappointment. His mom is a little more specific. She says, “In terms of kids with Doose Syndrome, our guy is doing well. Not great but not bad. However I got the "hard talk". The gap between C and his peers will continue to widen, his fine and gross motors skills will always be delayed along with his social, emotional and cognitive abilities…. One thing I know is that no matter what, he is one of the most inspirational, amazing men I know!!” How could it be otherwise? He has a pretty amazing mom.

Our guy continues to inspire me too. He is silly, he is fun, he is smart and he is quirky, mostly in a good way. He amazes me every time I see him. He has enough optimism for both of us which gives me the hope that one day people will understand epilepsy and not be afraid …that they will know that seizure disorders cause symptoms apart from seizures…that when a small boy finds it hard to line up at school, or misbehaves in a restaurant or at the grocery store, it isn’t a result of poor parenting but the consequence of a small brain misfiring and the effects of the drugs it takes to keep that brain on the straight and narrow. My hope is that those parents who hug their perfect children close and roll their eyes at our guy, come to realize that their lives too, can change, in the blink of an eye, at the turn on a dime.

 

http://www.epilepsycalgary.com

http://www.epilepsy.ca

Dog Blog

In August 2011, I blogged  And Then There Were Two. It was about the arrival of our new puppy Jake and how I thought it would be a good idea to get our other mini-dachshund, Lily, a friend. I thought it would make our lives easier by providing Lily with a playmate. Not sure why I thought she needed a playmate...if I'd asked her, she would have said no thanks.

Lily and Jake became great friends but there was an uneasiness in Jake. He was nervous, edgy, didn’t like to have his tummy rubbed, couldn’t stand anything around his neck. He backed away when I tried to pick him up. He didn’t trust me.

I took him to puppy class and he wouldn’t leave my side. During play time he hung out with the people and didn't want anything to do with the other dogs. The trainer said he seemed a little lost – she said I needed to find him a job. I could barely get this guy to walk on a leash let alone do anything that required training so we put up with his strangeness. He grew into a lovely, gentle, aloof guy with a collection of doggie neurosis that would choke a Great Dane. And then it got weirder.

In April, 2012, I found another dachshund puppy we called Clancy. Note I am not saying mini-dachshund anymore as both Jake and Clancy left that lofty group behind about six pounds ago and only Princess Lily remains below the 11 pound designation.  Clancy arrived as a result of “oh please, please, please, I’ve always wanted a wire-haired one and three won’t be any more trouble than two, oh please, please, please.” And so he joined our strange little group of four-legged buddies.

When we brought Clancy home, Lily rolled her eyes and went to sleep on the couch. She scowled at me a lot and if the pup peed on the floor, she turned her back in disgust. She had no mothering instinct whatsoever. Take him back where you got him, she seemed to say.

Jake, however, had found his calling. He was a natural mother. He followed the pup everywhere, cleaned his face, cleaned his ears, cleaned…well…everything. He let Clancy play with his toys and he backed away from the food dish and let Clancy eat first. He slept with him and he wouldn’t go outside, or come inside, without him. When the pup came for a cuddle, Jake was there too, making sure we were treating his baby right.

This new Jake was a little disconcerting at first but with a new purpose in his life he calmed right down. He had become a dog with a job and he took it seriously.  The flighty, nervous, squirmy dog we knew had transformed almost overnight, into a responsible canine citizen. And now that Clancy has grown up and is slightly heavier than his mother/brother, he gets a little grouchy when Jake pins him down and licks his ears, but for the most part, they are great buddies.

Jake is happy, cooperative, affectionate and confident. He now likes to have his tummy rubbed and his ears scratched,  and he has taken on a second job – when he isn’t being a mother, he’s a people walker.

 

My Favourite Course to Teach

I'm very pleased that my favourite course to teach is running again beginning on January 24th at the Alexandra Writers Centre Society. If anyone is interested, there are a couple of spaces left. It's a personal essay course but the word essay seems to intimidate people, makes them think of English classes in school, theses, carefully constructed arguments, strong academic focus. But it's not like that.

We all have stories to tell, incidents that we want to relate because for whatever reason they're important to us. They stick. We remember them clearly and they have a deep meaning for us personally. What we try to do in the course is take these personal stories and incidents – easily  relatable anecdotes – and discover why they are important to us, why they stick in our minds, why we think about them over and over, and what deeper meaning behind the emotion they make us feel is.

Possibly most importantly, we explore how we can make them mean something to others, how we can connect with our readers and make them feel the way we do.

 We talk a little about markets and submissions, and we read published essays and discover how and why they work, but mostly we write. Participants are required to do some writing at home, there is a workshop component if the participants request it and, because we're sharing our personal stories, we get to know each other well. Often participants from previous classed become firm friends and decide to keep meeting and writing on their own.

I'm always amazed at how much I learn from the people who come and write their stories. Participants have written about scuba diving, mountain travel in the Andes, a trip to Auschwitz, buying lingerie, selling the family van, false teeth, grief and survival, school bus safety, cleaning up doggie do, canoeing, cultural differences, eating disorders…topics are as diverse and unique and the participants themselves. And it’s always interesting.

So, if you’ve ever wanted to write down your own stories, expand their meaning, and rant a little, visit the AWCS website www.alexandrawriters.org    go to "what we offer" and look under 8 week courses for Our Stories: Personal Essays with Public Appeal and join us. I'm already looking forward to meeting a new bunch of personal essay writers later this month.

The Duck Project

Several years ago, the class of about a dozen special needs students I worked with, participated in “The Duck Project.” “The Duck Project” was much like “The Egg Project”, where students are required to carry an egg around and take care of it, making sure it isn’t neglected or broken, with the intention of giving the chosen students the responsibility of looking after something that depends on them for survival.

Only with “The Duck Project” each student was given a duckling, a beautiful, fluffy baby, to take care of for two weeks after which time the ducklings were returned to the duck farm and left to grow up and become someone’s dinner. How lovely though, that for a brief time, the students would have the opportunity to take care of a living, breathing thing whose life depended on them. A fine life lesson for young teens? A taste of reality maybe?

It was an absolutely dreadful idea from the start – baby ducks, although cute as can be, stink after only a short time in an enclosed pen (where they were kept during school hours, a much preferred location, I am sure to the boxes they were kept in while being transported to and from school and maybe longer.) A letter and a consent form explaining the purpose of the project went home but accommodations weren't checked out. I believe though, most of the ducklings were cared for appropriately.

Days passed and the ducks grew rapidly. They got bigger, noisier, smellier and less cute. The kids lost interest quickly because looking after them was hard and unrewarding work. Ducklings don’t give a lot back. The peeping was continuous, tempers flared and everyone was getting pretty edgy. By the time the ducklings and students had been together through a weekend, everyone, including the ducklings I’m sure, wished that the project would end. And for one it did, very abruptly.

About midway through week two, a previously healthy duckling died overnight at the student’s home. The student came to school and told the teacher she didn’t have a duckling anymore. I wasn’t privy to that conversation and I don’t know the details which were never shared with the rest of the staff working in that classroom. However, I do know the ducklings were returned to the duck farm that day and the dead duckling was never acknowledged. Questions from the other students went unanswered. It was as though the poor duckling never existed. Death, especially suspicious death, apparently was a taboo subject, not to be included in this life lesson. As classroom assistants, we were told not to discuss it.

Weeks later however, a group of the students approached me and asked me if I remembered xxx’s baby duck and wanted to know what happened to it. I told them it died and they asked why. I said I didn’t know. One said she’d heard that it was strangled and another said it got stepped on. One of the boys told them the family ate it? Someone else said it drowned? They all knew it was dead but my goodness, how rumours grow when questions aren’t answered!

They wanted to know where it was, what happened to its body? Again, I didn’t know. Their concern, empathy and sorrow were evident. One said it was wrong to just forget the duck like it was nothing and started to cry. I told them it was okay to be sad and that it made me sad too.

The students had expressed my thoughts precisely. The fuss at the beginning of the project suggested that the ducklings should be personified and treated like part of the family, like darling baby cousins coming for a visit, and yet when this duckling died, there was no mourning, no funeral, and no acknowledgement of sadness and grief even though everyone was visibly upset. All of the ducklings were just gone.

Children require answers so they can make sense of their world. Tragedy and death are not pleasant topics but questions need to be answered in an honest way. Information doesn’t have to be repetitive, elaborate, or sensational – just informative at the level of the kids’ questions and understanding. So much angst could have been prevented after "The Duck Project" if only the kids’ feelings had been considered. Tragedy happens and when it does, kids hear about it. They want mostly to be reassured but often don’t have the words to express their needs. It is important to find the time to listen and to share information at their comfort level so fears can be addressed and their rampant imaginings can be put to rest.

Play it again...

Okay, so I have this cupboard full of old cookbooks and recipes. Most are mine but some of the really old ones were my mothers. And there’s a recipe box full of handwritten recipes from before that.

My grandmother’s scone recipe is there but the method involves a handful of this, a pinch of that, a dollop and a slab of other ingredients and then folding it all together with your hands until a soft dough forms. I tried this once and got to the folding together part, assuming that the dough “forming” was a kind of magical phenomenon. It wasn’t and I doubt that I translated dollops and pinches correctly because it was all a big mess. All I know is my mom made these scones and, with strawberry jam, they were out of this world delicious.

There are several old recipes in that box, all with really vague measuring instructions. Maybe in the early 1900s there was a collective baking sense that came to women the way computer sense now seems to be almost inherent in our children. Born half way through that century, I missed out on both counts.

But the reason I was recently snooping through those old recipe files was because I was in search of THE vegetable marrow honey recipe. This delicious, lemony preserve, when spread on toast of fresh bread was wonderful, one of the special tastes of my childhood – something I remember fondly but don’t know how to make. I could let it go, but as fate would have it, my mother fed it to my son when he was a little guy and he remembers. A few years ago he asked me if I would make some. I thought I had it figured out but, like the scones, it was a disaster. I haven’t thought about it since.

Fast forward to the market last weekend. The lady in front of me asked the market lady if the squash she was holding  was a spaghetti squash. No, she was told. It was a vegetable marrow. The market lady said she hasn’t  been able to get them for several years. Maybe the grocery stores haven’t had them either because I haven’t seen one in a long time.

“I don’t want it then,” said the spaghetti squash lady.

“I do,” burst out of my mouth, the memory of marrow honey teasing my taste buds, the memory of not having the recipe, gone. So I brought it home. It isn’t as big as the ones my dad grew but it is a firm, light yellow vegetable marrow, none the less. And it’s waiting for me to do something with it.

So I am in search of the recipe. I’ve found a couple that might work on vintage recipe sites and I’m hoping I can come close to the smooth, buttery texture and fine taste of the marrow honey I remember. If not, I’m done, but if it works, there will be a couple of us who are really happy.

Anyone else have memories of marrow honey?