This past weekend I celebrated my 50th birthday.  As birthdays go, it was a pretty spectacular one.  I started and concluded the weekend at my cottage – one of my favourite places on this earth!  As luck would have it I had to run up to the cottage friday to have my youngest ready to report to a local film site on saturday morning where he was cast as the aide to Sir Bond Head in a historical film project.  Doesn’t he look impressive!


After filming we sprinted back to Waterloo to celebrate my birthday with family and friends.  On Sunday I played in a mini-soccer tournament with some pretty fantastic women.   Following three hours of continuous soccer in staggering heat I jumped back into my car and ran back up to my cottage to join my husband for a hot date (literally!) re-staining the exterior of our cottage.


Truth be told, though, that hot date re-staining our cottage was awesome.  One of the things that we don’t talk a lot about when it comes to caregiving is how it can fracture a family.  By fracture I don’t mean divorce, or something drastic like that, though we know that happens.  What I mean by fracture is that caregiving often causes a growing family to “divide and conquer”.  At least it did ours.


What I mean by “divide-and-conquer” is the fact that one parent had to almost always remain with Matthew to provide care while the other parent engaged in family life.  Since the world is a fairly inaccessible place, and Matthew was very medically fragile during our younger family years, this often meant that I remained at home to provide care while my husband took our two able-bodied children to music lessons, Little League games, hockey practices, and so on.  I would often organize nursing care so that I could make important games and performances, but I missed more family activities than I would have liked.


What this also meant was that couple time was exceedingly scarce since we often ran off in different directions facilitating family life.  Throw in the fact that my husband has an inordinately  busy job and my husband and I have often gone days passing like ships in the night communicating with yellow sticky notes and brief emails.  Time together has always been a rare commodity in our divide and conquer family life.


Which is why I love our cottage, particularly now that our children are more independent and we have stable nursing care for Matthew.  Owning a cottage means work.  At times it means work that demands two bodies to accomplish the task.  This means that my husband and I now find ourselves tackling chores together out of necessity.   You might laugh, but this is actually a pretty novel thing in our marriage, and one we are both enjoying.


Last summer after extensive accessibility renovations to our cottage my husband and I arrived early in the spring to find the all the furniture stacked in the living room covered in sheets.  Most of the contents of the cottage was packed in boxes.  In order to sleep that night we were going to have move furniture back to its original location and unpack important things like blankets and sheets.  We cranked the tunes, cracked some cold beer, and got to work –  working well past midnight organizing the cottage.  We talked and laughed and had a really fantastic time.  That memory of unpacking the cottage remains one of the my favourite of last season.


Over the last few weeks my husband had been heading up to the cottage to re-stain the exterior of our vintage cedar clad cottage. I have remained at home because we didn’t have full weekend nursing coverage for Matthew.   But I put my foot down when it came to climbing tall ladders.  I told him that he couldn’t do such a thing unless someone was there to make sure he didn’t fall and injure himself.  Or at least was there to call 911 when he did.  So on sunday, after three hours of soccer, I ran up to the cottage to help with the two-person parts of staining our cottage.  We spent monday staining in the crazy heat that surprised much of Ontario late in the September.  We concluded the day with a barbecue and a game of Scrabble.  It was a rare moment of togetherness in our busy lives, and it was lovely.


Couple-time is often a casualty of extreme caregiving.  We talk about the fact that couples rarely have time for fun things like dates, outings, or shared vacations.  But what we often don’t talk about as much is the fact that the shared mundane stuff of life can also vanish.  Things like washing the dishes together, cooking together, attending worship together, walking the dog – those brief snippets of daily togetherness just don’t happen, at least not together, because someone has to be doing the work of caring.  And it is these little everyday moments of life that are an important glue that cement a marriage.


I am glad that my husband and I are reaching a stage in this caregiving journey where we seem to be getting some of those moments back.

Accommodation is not coddling.

Most mornings I enjoy a cup of coffee while I peruse the headlines of two newspapers before tackling whatever work the day requires.  Today, as we were passing the various newspaper sections between us, my husband pointed out Margaret Wente’s opinion piece in the Globe and Mail as something that might pique my interest.  He was right.


Wente argues that we are coddling our university students.  She argues that mental health initiatives, and many accommodations for people with identified disabilities are simply slanting the odds in favour of the less resilient, and less able.  She seems fine with the idea of physical accommodations for physical disabilities, to a point, but accommodating intellectual disabilities simply means, as she sees it, students unfit for university are allowed to earn degrees they don’t actually deserve.


What Wente seems to completely lose sight of that those accommodations don’t water down the requirements of university work, they simply shift the work so that students can learn by employing their strengths.  University learning, as a general rule, is highly structured and taught in a fairly linear, universal manner.  Students who  process written information rapidly, and who write fluently, do well.  Students who process language and information at different speeds, or by using different avenues, often require accommodations.  This doesn’t mean the students don’t do the work, they just might do the work differently.  For example a student who struggles with reading might listen to a book.  A student who has difficultly organizing information might employ a range of assistive strategies.  Students who process information more slowly are allowed extensions for papers and exams.


Sadly, Wente seems very comfortable with the idea of a universal society where people fit into specific boxes and slots and go on to engage society accordingly.  Those who can perform in a very specific, and very narrow,  intellectual box get to attend post-secondary schooling and proceed to work in coveted jobs.  Those who learn and process information differently should be excluded – their potential and contribution lost to society.  Wente seems to lose sight of the fact that when society becomes more fluid in its understanding of contribution, talent, ability, and work, we are far more able to access the wisdom of our collective community.  Just look at the level of innovation emerging from tech sector with its norm-busting, jeans wearing, rock-climbing, skateboard riding, all-hours keeping, work environments.  The tech sector doesn’t encourage people to think outside the box.  It threw the box out years ago having found it needlessly constraining.  The idea that a work environment like the tech sector could look like a teen playground was anathema until recently.  Surely such slack work expectations would yield poor results.   Nope.


Wente also seems to lose sight of the fact that historically we have found all sorts of reasons to limit  both access to opportunities and the potential of our fellow community members.  She seems unaware of the idea that “normal” is a social construct that shifts as the years go by.  We have found all sorts of valid, in our view, reasons to exclude people that seem different from the cultural majority – those we think of as normal.   What accommodations teach us is that if we drop those arbitrary, and yes they are arbitrary, expectations  of students to fit into some narrow definition of “normal” then a whole lot of students can do a whole lot of stuff we didn’t think they could do.  And by extension these students go out in the world and do even more amazing stuff, not in spite of engaging the world differently but because they engage the world differently.

Most people know that I am a doctoral student who hopes to actually complete a PhD before I die.  Some days I have sincere doubts that this a realistic goal.  This PhD journey has been long and tortuous and has been assisted by many accommodations, and a whole lot of compassionate flexibility, over the years.   Most notably, I have had professors willingly offer paper extensions.  But recently I had a professor engage in some pretty creative accommodating to ensure I could complete my studies locally.  All this support has meant that I can continue to study while managing the complex demands of my son’s care.  It isn’t that I have fewer expectations, or that my work is lacking, it is simply that I am engaging the doctoral program at a different pace than other students.  Without this flexibility, and that is what it is, flexibility not coddling, I am able to pursue my dream of engaging in caregiving research.  But by Wente’s thinking I am simply a fragile student who is being coddled.  That fact that my unique life experiences mean that I have something to say, and perhaps even something meaningful to offer to the conversation about disability and caregiving, is lost to her.  By her thinking, the very idea that I cannot keep pace with students who do not care for a complex child ought to exclude me from the journey.  But by excluding real-life caregivers in ongoing research about caregiving means that our conversations and study of the subject would never be ground in real-life.  Something huge would be lost in the conversation and our best research would have gaps in knowledge.  Accommodations mean that I get to be part of a conversation that would have been unavailable to me without that flexibility.  And in return, perhaps I can add something meaningful to the dialogue.


It’s the same when we exclude students with disabilities.   Sorry Ms. Wente.  Despite what you suggest, giving a student with a limp a 20-yard  head-start does not offer meaningless results at the end of 100-yards.  What the race teaches all of us is that there are many ways to creatively get places, and that being the first to cross the finish line isn’t the only way to measure success.  Accommodations allow people who engage the world differently than the majority to teach us that thinking and moving and learning outside the box can offer amazing insight and incredible results.


Similarly,  Wente argues that things like dog therapy during exams is coddling students who should just suck it up and get through the tough days.  As she points out, in her day they used much better coping strategies, you know, like pot and alcohol and jelly doughnuts.  Yup.  That’s right Wente.  Drug use, or binge drinking, makes so much more sense than a healthy coping strategy like having stressed out students play with dogs for an hour during a lunch  break.



Wine drinking mommies.

Alas, summer has passed and I once again find myself sitting daily at my desk thinking about university courses, philosophy, and the occasional blog post.  It is good to be back and the return to routine is soothing.


The theme of this post has been swirling in the back of my head for a while.  A few weeks ago during my nightly knitting fix I watched a documentary about problem drinking.  Featured prominently was a mother’s group who gathered weekly for wine and conversation.  Most women at the gathering drank a little “too much” and one woman in particular was approaching problem drinking.  The women in the group talked openly about the need to cope with their mommy moments with this weekly opportunity to gather and cut loose.  Alcohol, they admitted, deadened the sting of divorce, betrayal, disappointment, loss, and daily drudgery.  The fact that the their wine habit was becoming a very real problem for a dear friend seemed to be missed by the group.  If anything there was judgement being directed at her inability to keep control.  Seemingly lost on the friends was the idea that they, too, were only a few drinks, a divorce, or a tragedy, from losing control; that control was indeed fragile in this culture that increasingly celebrated wine as mommy’s new best friend.  I remember commenting to my husband that I could see how easily the slide could happen.   And that there was a time I think it could have happened to me.


Today there was an article in the paper that reminded me of that recently watched documentary.  For those who don’t know there is a colossal uproar about a Toronto wine festival for new mothers.   The tagline is “babes on hips, wine on lips”.    The organizers of the festival argue that the vitriol directed at the mothers and the festival is unfair and is just another form of backlash and judgement heaped upon moms.  They argue that a beer festival for dads would be fine, but wine and women is seen as problematic.  Conversely, others worry that in an era of increased problem drinking among women public mommy-wine festivals are another brick in the wall of normalizing alcohol consumption and inappropriate drinking as stress management.


I think there was a time when I would have agreed with the first sentiment.  Now I am not so sure.  And in the interest of full disclosure this will be an uneasy post to write.  This is not the sort of stuff a have-it-all-together woman talks about.


During the years when Matthew was at his most medically unstable I celebrated the survival of yet another day of unsustainable stress and anxiety with an evening glass of wine.  My days were a blur of isolation, teeth gnashing worry, and constant thankless demands.  I was knee deep in extreme care.  The days were alternated with nights where I slept little.  While I loved my family and was devoted to my kids, many days were filled with mind-numbing drudgery done in total isolation.  Adult company of any kind was rare.  And as is the case for many young moms, leaving the house to go to the gym, or go for a jog, or engage in a range of healthy coping strategies, wasn’t realistic. I couldn’t leave the kids unsupervised, and in particular Matthew with his reflux and breathing issues and seizures, required extraordinary vigilance.

Facebook told me this evening glass of wine was an acceptable and normal coping strategy.  There were daily memes on Facebook celebrating the “mommy needs a cocktail” message. There were funny videos of yummy mummies sipping wine between bicep curls, or sit-ups.  There was yoga and wine.  Wine was cool, and funny, and mommy’s new friend.  The mommy wine culture seemed pervasive.  And so every evening I collapsed on the couch, often alone, with a glass of wine.  During the worst years of caregiving my evening glass of wine was a ritual that I would look forward to. Some days I outright craved it.  It offered a few minutes of “me” time.  It took the edge off of my chronic anxiety.  The nightly ritual helped shut me down.   On really brutal days I might have a second glass of wine.  It was normal.  Many of my friends admitted to a daily glass of wine, so it must be okay.  Social media confirmed this.  My family doctor, when asked, noted that the number of drinks I had per week was below the accepted norm for women.  So clearly I was fine.


But you know what.  I wasn’t fine. My alcohol consumption might have been considered “safe”, but I knew that my nightly ritual was crossing into a form of self-medication.  I knew that I was beginning to dance on the top of a slippery slope and it was starting to scare me.  I could see how the fall down that hill happened to women – even women who seemed to have it all together.  Wine was becoming a friend I spent my evenings with and I knew that was NOT okay.


I am not the least surprised that problem drinking is on the rise in women.  Despite the fact that most women work outside the home while juggling parenting and homemaking tasks, statistics tell us that their male partners haven’t stepped in to share the load.  Caregiving and household tasks inordinately fall on women.  Extreme caregiving almost always falls upon women.  Practicing self-care can be downright impossible and that nightly glass of wine becomes a very easy, and very convenient substitute. And there are messages every where explicitly telling us that wine is how mommies cope with an out of control day.  Or life.  And when life throws you a curveball, say a medically fragile child,  that glass of wine could become two glasses of wine.  Or more.


A few years ago I remember sitting on the couch having finished my nightly glass of wine.  And I wanted another.  Hell, I craved another.  It had been a crappy day.  Matthew had screamed for the whole freaking day.  The doctors were ignoring our plea for pain control.  Matthew was miserable.  The house was a mess.  I was alone.  Again.  My husband, with his inordinately demanding job, was working late.  I couldn’t remember the last time I had done something fun, or had talked to an adult that wasn’t a nurse.  Damn, didn’t I deserve anther glass of wine?!


And that was when I knew this evening glass of wine was not a good thing.  In fact, it was probably a bad thing.  I didn’t deserve a glass of wine.  You don’t earn glasses of wine by surviving bad mommy-days. Wine was not my friend, nor it was my reward.  Wine wasn’t a healthy way to cope with mommy stress, or any stress.


It is that message, that wine is a salve or reward, that worries me about the mommy wine culture that is emerging.  The message is that moms have earned that glass of wine, or worse need it, to survive the days.  Wine consumption, it seems, is something the new, hip mom does.  And with that thinking it can become really easy to justify a second glass of wine.  And when you’re alone, no one knows about glass number two.  Or three.  And there it is. The slippery slope.


Several years ago my nightly glass of wine ritual stopped.  Cold turkey.  I switched to herbal tea.  Don’t get me wrong.  I am no tea-totaler and likely never will be.  I still enjoy wine socially.  A glass of wine with friends, or while sitting on the dock at my cottage, is one of life’s genuine pleasures.  I am turning 50 this month and I am sure I will celebrate by raising a glass.  But these days I am very clear that wine is a treat.  And more so, I am clear about the idea that wine is never something to ease the burden of a bad day, or stressful life. There is soccer, or jogging, or knitting, or friends, for those days and I reach out for those supports.


These days I am very intentional about when I choose to drink wine, and how much I drink.  Because a few years ago I was beginning to stand at the top of a slippery slope and I could see over the edge.  And I knew I didn’t want to go down that path.  Ever.