Archives for April 2011

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He Ain’t Heavy, He’s My Brother (2010/04/23)

With the arrival of my Mom yesterday, I did not have the time or inclination to post. However, I do still want to keep up with the Post A Day challenge, so for the next two weeks, while I’m doing stuff like visiting with my Mom and getting married, you may see a number of reposts. Like this one… I thought it would be fun to unearth the post from this day in 2010…

My boys have fallen into a new sleep routine.  At bedtime, we do all the stuff we always did.  They get their jammies on, use the bathroom, brush their teeth (most days they have a bath earlier in the evening).  For story-time, I sit on my glider chair between their beds – the same glider chair that saw me through countless night-time feedings when my boys were infants.  George gets right into bed, James curls up on my lap, and they each drink their milk while I read a story (current flavour of the day: anything to do with Thomas the Train).  After the story, James gets into his bed, each of them gets a sip more milk, and the lights go out.

About five minutes later, we usually see a little face quietly peeking around the corner: George, trying to sneak onto the futon we have in our living room so he can watch TV.  Or maybe he just wants the extra hugs we always give him, because once we’ve hugged him he goes back to bed amenably enough.  At some point during the night, usually fairly early on, he migrates to the sofabed in the playroom, and sleeps there for the rest of the night.

Sometimes I worry about this.  From time to time, when one of the kids is having a hard time, I have to sleep on the sofabed with said kid, and that thing ruins my back.  I always wake up the next morning feeling as if I’ve been tortured by Vikings.  I worry about whether the sofabed is doing to George’s back what it’s doing to mine.  But once he’s there he won’t budge, he sleeps soundly, and he wakes up cheerfully enough.  So maybe he’s OK and I just need to chill out a little instead of finding yet another thing to be perpetually stressed about.

In the meantime, James is sleeping soundly in his own bed.  He’s a little champion at bedtime, James is.  Once the lights are out he goes right to sleep without a fuss.  He usually wakes up in the middle of the night, though – sometime between midnight and three in the morning.  When I found out the reason for his nocturnal awakenings, my heart soared: he gets lonely for his big brother.  He makes his way to the sofabed, climbs in beside George, and goes right back to sleep.  George surfaces just enough to shift to make room for James, then he goes to sleep as well.

I am always the first one in the household to wake up in the mornings.  Some days – like today – I go for an early morning run.  Other days, I like to get dressed, pour out a cup of coffee, and have some me-time at the computer reading emails or playing meaningless games on Facebook.  I love carving out that time for myself in the mornings, before the rest of the world wakes up.

Whatever I am doing – running or playing on the computer – the first thing I always do is check on my boys.  I go to the playroom and watch them sleeping peacefully, each completely at ease with the other’s presence.  They look cosy and comfortable, like a pair of sleepy kittens.  There is always physical contact between the two: James’ hand resting on George’s, or George’s hand lightly touching James’ shoulder.  When I checked on them this morning, George’s arm was flung over James’ shoulders.  It looked big brotherly and protective.

I savour those moments as I watch them and wonder what dreams are going on in those little heads.  Even though they are sleeping, I feel as if I am witnessing a moment of special connection between the two brothers.

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If This Is A Dream, Don’t Wake Me

Today, I have had several moments of realizing just how damned lucky I am. And I found myself wondering, do I deserve all this?

This wonderful man who accepts me for who I am, who knows all kinds of stuff about me, and who loves me anyway, warts and all.

These two beautiful children who run – yes, RUN! – to hug me when I get home from work, and who crawl into my bed at night and wrap their little arms around me, just because they want to be near me.

My friends and family – both far and near – who genuinely want me to be happy, who are doing everything they can to make me feel like a princess as I lead up to my wedding.

People who are getting onto planes and traveling halfway around the world, just so they can be with me and Gerard on our wedding day. How amazing is that?

The generosity and support of my co-workers, who today presented me with a beautiful card and a wedding gift – more than I could have ever expected.

This wedding day that is coming up – a day will be filled with love and joy as Gerard and I embark on the next phase in our journey together.

There is so much bad stuff that happens in the world. Three months ago, a dear friend’s baby passed from this world to the next. Now, a close family member of someone important to us is about to do the same. I have witnessed the tragedy of parents burying their children, I have seen bad things happening to very, very good people.

Sometimes I wonder if I deserve everything I have, when there is so much sadness and suffering in the world.

My mind casts me back to a very dark time in my life, when I did not think I deserved anything.

And I am afraid that at any second, I will wake up and find that all of this has just been a dream.

If it is a dream, please let me sleep, because I don’t want it to end.

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A Life Hanging In The Balance

About three weeks ago, we hired a new respite worker for George. It has been a long, frustrating process – anyone who has ever had a need for a respite worker will know that the good ones are like gold dust. They are very hard to find, and even harder to keep.

When our new worker, F, walked into our home for an interview, I liked her immediately. Perhaps more tellingly, both of the kids took to her immediately. In a very short time, she has wormed her way into the hearts of the entire family.

Sadly, as she becomes an important part of our family, a crisis is happening in her own. A couple of weeks ago, the car that her sister and sister-in-law were traveling in was hit by a car making an illegal turn. The driver of the other car drove away at speed, but not before a witness snapped a picture of him with a cell phone. Police have since found the vehicle and identified the driver, who is currently hiding out in the United States.

F’s sister is OK. She has a broken leg and some nasty bruising. The sister-in-law, on the other hand, is in very serious condition. She was pregnant at the time of the collision, and the baby did not survive. And now her own body is gradually shutting down. She is not responding to medication, her lungs are filling up with fluids, and doctors are saying that there is nothing they can do.

She has been moved to palliative care. There have been conversations about DNR’s.

My heart goes out to F, who is very close to her sister-in-law. I think of the anguish she is going through, and the pain of the man who is likely going to be widowed very soon. I think of a two-year-old child whose mother is dying. And it just breaks my heart.

Anyone reading this – please send out positive thoughts of strength and healing to a family who really needs it. The doctors say that a miracle is still possible. Let’s try to bend the will of the Universe to make that miracle happen.

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Things Are Getting Hairy

You know that your wedding planning is entering its final stages when you start using Flight Tracker to see where in their journeys your out-of-town guests are. As I type this, my Mom and my brother are en route from Johannesburg to New York (a brutal flight that keeps you cooped up in a plane for 18 hours – I do not envy them). I will see my Mom on Thursday; my brother will arrive in Toronto from New York next week.

Things are coming together. There is still a lot to be done – so much so that thinking about my to-do list puts a knot of anxiety in the pit of my stomach – but most of the little crises that have arisen have been resolved.

I have not had a nervous breakdown. I came close last week, though.

It was all about the hair. I had booked a hairdresser to come to my house and do hair for myself, my maid-of-honour, the bridesmaid and the flower girl. To be fair, the hairdresser had told me ahead of time that school commitments might get in the way and we might have to make other arrangements. That was a chance I took when I booked her. And sure enough, she called me a short time later and told me that she would not be able to help out.

I got in touch with another hairdresser, one whose rates seemed reasonable. The problem was that every time I spoke to the guy there, I was given a different quote. Each quote was progressively higher than the previous one. Eventually Gerard spoke to the guy, and he was given a much higher price than anything I had been told.

It was clear that we could not use this hairdresser. At this rate, we’d have to sell our house to pay him by the time the day of the wedding arrived. What this meant, though, was that with two weeks to go, I still had no hairdresser.

Any woman would agree that hair is kind of important on a wedding day.

I lost it. I started to have this weird little meltdown, ranting to anyone who would listen about how I was never going to find someone to do my hair, and how I would have to persuade my makeup artist to wing it and do it for me (this was before the makeup artist bailed on me with no warning).

Gerard was trying to calm me down but I was just so stressed. I was making these high-piched supersonic noises that only dogs can hear.

Gradually, the pitch of my voice lowered enough for my noises to loosely resemble speech. I was tearfully saying stuff like, “My hair is very important, you know.”

Gerard, in a kindly and patient tone, said, “Of course it is.”

I think he was doing that thing where you agree with everything a hysterical person is saying, no matter what. I could have said that mulberry trees were falling out of the sky, and he would have agreed with me.

In the end, Gerard told me not to worry about it. He said he had a plan to make it all better.

Sometimes, when Gerard tells me not to worry, I have the sense to trust him. This was one of those occasions. And true to his word, by the time I got home from work the following day, he had found and spoken to a hairdresser. The day was saved. Relative peace could reign once more.

Despite earlier threats to shave my head and put a tattoo of a butterfly on my scalp, I will be able to walk down the aisle with beautifully styled hair.

It’s a good thing. That tattoo would have hurt.

(Photo credit: http://www.flickr.com/photos/25559122@N06/3811393733/)

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Rough As A Badger’s Arse

To say that I am feeling rough today would be an understatement. I have that exhausted, fuzzy-in-the-brain, all-over achy feeling that is usually associated with the aftermath of a weekend of heavy drinking and dedicated partying.

I guess this is partly true. On Saturday our bridal party threw a Jack & Jill party for us. One of the groomsmen showed up with several bottles of wine and a beer-filled cooler that could have sunk a small ship. “Drink!” he commanded. “Enjoy!”

Well, orders are orders. I drank. I enjoyed. The guys crowded around the cooler of beer like bees around a honeypot, while me and most of the other women present tucked into the wine.

It was an outstanding evening. There was food, there were happy people, there was a lovely raffle prize (which was won by my five-year-old), and there was the incredible spectacle of my soon-to-be mother-in-law enthusiastically throwing a pie into the face of her firstborn son, the groom-to-be.

Eventually the guests left, leaving Gerard and I to settle our over-excited children. By the time we fell into an exhausted sleep ourselves, it must have been close to two in the morning.

I woke up yesterday morning with a well-earned hangover – the kind that comes complete with a queasy stomach, an excruciating headache and a death wish. I stumbled into the bathroom to get some extra-strength Tylenol and some water. Then I somehow – probably by luck more than anything else -found my way back to bed, and with the room spinning around me, I went back to sleep.

For a change, the kids were not up at the crack of dawn, as they usually are on weekends. They let me sleep, the little treasures.

When I woke up for the second time, I still felt kind of gross, but at least I felt as if I was going to live. I got up and went for a run (I say that as if it was a seamless event – the process of getting up and going for a run actually took about three hours).

The run was hard. The weather was bad. I was exhausted at the end of it – as if I hadn’t already been exhausted to begin with.

You’d think I would have slept last night, but no. Not only is George going through one of his phases of not sleeping, my mind is chock-full of details right now and just isn’t letting me rest. I tossed and turned and eventually fell into a fitful sleep, not long before I had to wake up.

To borrow a wonderful phrase from a book I read (This Charming Man by Marian Keyes, if you’re interested), today I am feeling as rough as a badger’s arse.

After another seventeen or so cups of coffee, I might start to feel normal.

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Whatever The Weather

This morning I woke up, somewhat hungover after yesterday’s party at which Gerard and I were the guests of honour, looked out of the window, and said, “Oh crap.” April 17th, and it was snowing. We’re not talking about minor flurries here – we’re talking about copious quantities of the white stuff falling out of the sky and settling on the ground.

I had a problem with this for three reasons. First, my wedding is less than two weeks away, and that doesn’t give the weather much time to get its act together. Second, I really wanted to get in a decent run today and I didn’t relish the idea of running in the snow and the wind. And third, I’m just fed up with crappy weather. Anyone who knows me knows that I turn into a pathetic crybaby at the slightest sign of winter.

Nonetheless, I needed to go running. I have a half-marathon six weeks from now and my training lately has not been up to scratch. So I waited for a couple of hours to see if the weather would improve, and then I got dressed, laced up my shoes and braved the elements.

As I stood at the end of my driveway waiting for the satellites to find my training watch, I thought, Hey, this isn’t bad. The snow had stopped, the wind had died down to a tame breeze, and it wasn’t all that cold. It actually seemed like perfect conditions for a run.

I set off down the road at a moderate pace, and after about three minutes, it started to rain a little. I don’t really mind running in the rain, but this was not normal rain. Normal rain does not feel like icicles against your skin. The air temperature was fine, but the rain temperature was bizarrely cold. I kept going, though. I’ve run in worse conditions.

As I was running over the Rouge Valley bridge, though, the wind suddenly kicked up about ten notches, and it started to hail. The  hailstones were tiny, the size of the gravel you get for fish tanks, but it hurt. Believe me, those little hailstones flying at you with a hefty wind behind them can feel like tiny but very effective jackhammers against your face.

I came very close to turning around at that point, but I kept going. I knew that I would not feel good about myself if I gave up on my run after just a mile.

The hail continued for the next 2km or so. After that it gave way to snow. Not the cute little snowflakes that gently drift to the ground like you see in romantic comedies. These were big fat snowflakes that were flying to the ground like missiles. I felt like I was in Space Invaders. A snowflake flew into my eye at high speed. It hurt.

But still, I kept going.

At around the 6km mark, I suddenly realized that I was enjoying myself. The weather had righted itself without me really noticing it. There was no snow, no hail, no rain, and no wind. The sun was even peeking out from behind the clouds. I had a lovely time for the next 3km or so.

Right after I had completed 9km, a gust of wind came from nowhere and almost blew me away. If I’d had an umbrella I would have looked like Mary Poppins. This wind was unbelievable. It was blowing straight at me with such force that it actually took my breath away.

I still had 2km to go, which in the scheme of things is almost nothing, but when you’re running into wind that feels like a solid wall, it’s a long way. Those last two kilometres were really, really tough. I had to slow my pace because the wind was so strong and I’m not a Kenyan.

By the time my aching legs carried me back into my driveway, I was absolutely spent. My time for the 11km run was not great, but it was well within the range of what it should be. Most importantly, though, I had done it. After several weeks of poor training that had made me wonder whether I still had the right to call myself a real runner, I was once again the kind of runner I love to be.

The kind of runner who goes out and logs the miles, whatever the weather.

(Photo credit: http://www.flickr.com/photos/hanspama/4199315435/)

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Whatever The Weather

This morning I woke up, somewhat hungover after yesterday’s party at which Gerard and I were the guests of honour, looked out of the window, and said, “Oh crap.” April 17th, and it was snowing. We’re not talking about minor flurries here – we’re talking about copious quantities of the white stuff falling out of the sky and settling on the ground.

I had a problem with this for three reasons. First, my wedding is less than two weeks away, and that doesn’t give the weather much time to get its act together. Second, I really wanted to get in a decent run today and I didn’t relish the idea of running in the snow and the wind. And third, I’m just fed up with crappy weather. Anyone who knows me knows that I turn into a pathetic crybaby at the slightest sign of winter.

Nonetheless, I needed to go running. I have a half-marathon six weeks from now and my training lately has not been up to scratch. So I waited for a couple of hours to see if the weather would improve, and then I got dressed, laced up my shoes and braved the elements.

As I stood at the end of my driveway waiting for the satellites to find my training watch, I thought, Hey, this isn’t bad. The snow had stopped, the wind had died down to a tame breeze, and it wasn’t all that cold. It actually seemed like perfect conditions for a run.

I set off down the road at a moderate pace, and after about three minutes, it started to rain a little. I don’t really mind running in the rain, but this was not normal rain. Normal rain does not feel like icicles against your skin. The air temperature was fine, but the rain temperature was bizarrely cold. I kept going, though. I’ve run in worse conditions.

As I was running over the Rouge Valley bridge, though, the wind suddenly kicked up about ten notches, and it started to hail. The  hailstones were tiny, the size of the gravel you get for fish tanks, but it hurt. Believe me, those little hailstones flying at you with a hefty wind behind them can feel like tiny but very effective jackhammers against your face.

I came very close to turning around at that point, but I kept going. I knew that I would not feel good about myself if I gave up on my run after just a mile.

The hail continued for the next 2km or so. After that it gave way to snow. Not the cute little snowflakes that gently drift to the ground like you see in romantic comedies. These were big fat snowflakes that were flying to the ground like missiles. I felt like I was in Space Invaders. A snowflake flew into my eye at high speed. It hurt.

But still, I kept going.

At around the 6km mark, I suddenly realized that I was enjoying myself. The weather had righted itself without me really noticing it. There was no snow, no hail, no rain, and no wind. The sun was even peeking out from behind the clouds. I had a lovely time for the next 3km or so.

Right after I had completed 9km, a gust of wind came from nowhere and almost blew me away. If I’d had an umbrella I would have looked like Mary Poppins. This wind was unbelievable. It was blowing straight at me with such force that it actually took my breath away.

I still had 2km to go, which in the scheme of things is almost nothing, but when you’re running into wind that feels like a solid wall, it’s a long way. Those last two kilometres were really, really tough. I had to slow my pace because the wind was so strong and I’m not a Kenyan.

By the time my aching legs carried me back into my driveway, I was absolutely spent. My time for the 11km run was not great, but it was well within the range of what it should be. Most importantly, though, I had done it. After several weeks of poor training that had made me wonder whether I still had the right to call myself a real runner, I was once again the kind of runner I love to be.

The kind of runner who goes out and logs the miles, whatever the weather.

(Photo credit: http://www.flickr.com/photos/hanspama/4199315435/)

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Performing Artist In The Making?

Sometimes it is just not possible to write a post. People get sick or busy, unexpected things happen, and life just gets in the way.

Or sometimes people throw bridal showers for you – or in my case, Jack & Jill parties – and you spend the day drinking red wine and watching your future mother-in-law pay $50 for the privilege of throwing a pie in your fiance’s face.

The last of the guests has left, and the last glass of wine for the evening has been drained. It was a good, good day – one that I needed, because my stress levels have been through the roof. I’m in no fit state to write because I’ve had a lot of wine and I’m slurring my words. Instead, I offer you this picture of James acting like a ham.

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The Meaning Of Friendship

When George was a newborn, I joined an online group for parents of living children who had also experienced pregnancy or infant loss. Having gone through two pregnancy losses, I was paranoid about everything connected with my new baby. Did those sniffles indicate a cold or something more serious? Why wasn’t he nursing? Was that little bump to the head going to cause permanent damage? Was I actually going to be able to keep this tiny scrap of a human being alive?

In the online group, I found a home – a group of women whose experiences, while all very unique, gave us a common ground. We consoled and comforted one another, offered advice and reassurances, laughed and cried with one another. We became friends. And as you find in any group of friends, there was drama. We had disagreements and conflict. Some people left never to be heard from again, others left and came back.

Seven years on, the core group of us are still friends. The online group itself is not as active as it once was, because most of us are friends on Facebook, and we communicate that way. But we are still as much of a support for one another as we always were. Through seven years (and in some cases, more), we have seen each other through births and deaths, marriages and divorces, relocations, bankruptcies, illnesses, post-partum depression, and even a prison sentence. We have been there for each other through everything.

In 2007, George was diagnosed with autism. As I dealt with the implications of this, including my own emotional fallout, my girls were there for me. Their love and support helped keep me buoyant at a time when it would have been so easy to drown. These amazing women, who had already helped me stay sane through relationship and financial problems, the loss of my father, and my pregnancy with James, once again banded together to help me cope.

And then, a little over a year ago, I found another online group of friends – these ones parents of children with autism. They wormed their way into my heart in the same way my first group had. Although the general conversations centre around different issues, the sense of love and support is present in both groups. My autism friends have been part of my life for substantially less time, but they have helped me over so many hurdles. They tell me I’m a good Mom when I’ve struggle to deal with George’s behaviours. They celebrate with me when he achieves a milestone, and they commiserate with me when a stranger in a grocery store says something ignorant about my child.

Both groups of people are brutally honest in their opinions. They have the strength and the integrity to tell me what they really think, instead of telling me what they believe I want to hear.

From the two groups combined, I have met exactly three people in person.

Occasionally, someone makes a distinction between online friends and IRL (“in real life”) friends. To me, there is no such distinction. Just because you communicate with someone primarily through email or Facebook, that doesn’t mean they are any less real. The only word in the equation that means anything to me is “friends”. And that is truly what these people are. I cannot imagine my life without them. I do not know how I would have weathered the storms of the last few years if they hadn’t been there to keep me afloat and give me reality checks when I needed them.

This post is dedicated to my friends at PALC_group and Parenting_Autism. Thank you for being the wonderful people you are. I love you all.

(Photo credit: http://www.flickr.com/photos/ilamont/4329364198)

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The Wheels On The Bus Go… WHERE?

The start of the next school year in September is going to be a big time for our family, as both boys make the leap to full-time school. In August, George is being discharged from the therapy centre where he currently spends his mornings, and James will be graduating from half-day Kindergarten and going into First Grade. It is a big adjustment for both boys, and although I expect some fallout, particularly from George, I am not too concerned. I have faith in both of the boys’ schools.

It’s the school buses I’m worried about.

For James, this isn’t an issue. We live too close to his school for buses to be in the picture for him (much to his disappointment; James would love to ride in a school bus like his big brother).

George, on the other hand, needs the bus, and four years’ worth of problems in the school bus system have taught us a very unfortunate fact: when it comes to scheduling school bus runs, special needs children are treated as an afterthought. The children who do not have any disabilities – in other words, the ones who as a rule are more adaptable and resilient – have their scheduling sorted out very early on in the school year. And the children who do have disabilities – the ones who are vulnerable, have higher levels of anxiety and more reliance on routines – easily spend six weeks or more being picked up at different times, by different drivers, and spending inordinately long periods of time on the bus, while their parents try to figure out what is going on.

Like most parents of young children, I want to know where my kids are at all times. I want to be able to know that at this time, George is on the bus, or at that time, James is eating lunch at the daycare. I do not want to be wondering whether or not George is still at the therapy centre and why the school is calling me to ask why he hasn’t shown up yet.

Last year, right after the Thanksgiving weekend, there was an incident with George’s bus that, while turning out OK, could have had terrible consequences. At that point, we had struggled with the bus company for almost two months getting George’s schedule worked out, and we thought that it had finally been resolved. George was being picked up at a consistent time from the therapy centre by a driver he knew from the previous year, and he was spending half an hour at most on the bus before being dropped off at school for the afternoon.

On the first day back after the Thanksgiving weekend, George was picked up at the usual time by the usual bus driver. He was driven to school.

The only problem was this: it was the wrong school.

Thank goodness George had on a seatbelt lock, which prevented him from getting up, walking off the bus, and getting lost or worse. Thanks to the seatbelt lock, someone had to actually get onto the bus to remove the seatbelt.

The teacher who took George off the bus didn’t know what was going on. She took the driver’s word that George was supposed to be there. It was only when the driver had left and George was standing in the principal’s office with a confused babble of grown-ups surrounding him that someone realized that a mistake had been made.

For a regular kid this would have been bad enough. For a child with autism who is afraid of people and places he doesn’t know, and who has severe communication impairments, it was downright traumatic.

Somehow the principal figured out who George was, and through a series of phonecalls, was able to figure out where he was supposed to be. A child’s booster seat was dug up from somewhere, and the principal bundled George into his car and drove him to the right school.

It only then, when George had arrived at his own school, that someone thought of calling me and Gerard to tell us what had happened. Up until that point, we had been completely oblivious to all of this.

While we were unbelievably grateful to have our child home safe and sound at the end of that day, we were haunted by thoughts of “what if”. The thoughts of “what if this happens again” prompted us to spend the next few weeks trying to figure out what the hell had happened.

We never did receive satisfactory answers. We do know that the bus driver was not at fault, that she was given the wrong information from higher up. We also know that in said higher-up’s attempt to avoid responsibility, the bus driver was relieved of her duties. There were no attempts made to figure out what had gone wrong so that steps could be taken to prevent it from happening again.

And in a few short months, we are going to have to fight a new battle for a new school year.

(Photo credit: http://www.flickr.com/photos/alextakesphotos/149198520)