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.